12/22/2006 I will be starting round 3 on January 2nd 2007 (Interlukin-2)

Well, I got the word that I will be admitted to Shadyside Hospital on 1/2/2007 for my next round of therapy. I will try to push my body a little harder this time.

At this time I want to wish everybody a Merry Christmas and a Happy and Healthy New Year.

Your emails have given me great strength to push the envelope of life. I been awakened to the true meaning of friendship. Words cannot describe what my heart is feeling right now. You have reached out to me and have made me a part of your extended family. You have cheered me on through thick and thin. And when I was down, you picked me up. You never left my side, and for this, I want to thank you from the bottom of my heart.

Have a wonderful Holiday!!!!!

Jimmy B.

12/19/06 I got an Early Christmas Present!!!!!!!!!!

I got an Early Christmas Present!!!!!!!!!! Ho Ho Ho!!!!!!!

Heather just contacted me about the CT Scan. She said “Are you sitting down”. I was thinking the worst. “I have good news for you.

The 40 + nodules in the lungs are down in number to only 10 and most of them have shrunk down considerable.The ones on your back also shrank.” This is the best news I heard all year. This means that the Interlukin-2 is working, and I will continue on the regiment after the Holidays.

With my new facial growth, I now look the part of jolly old St. Nick.

What a Christmas Present.

Thanks for all your support!!!!!!!!!!!!

Take Care

Jimmy B.

12/08/2006 CT Scan Schedule for Thursday December 14th

I got the script in the mail from Doris to go ahead and make arrangements for the CT Scan. So I contacted University of Rochester at Science Park and schedule an appointment. It is schedule for Thursday at 2:15 pm. I’m hoping to get an early Christmas present when the results come back.
In the meantime, my weight has gone from 242 lbs. to 222. So I have lost 20 lbs. of water weight and still need to drop another 10 lbs. The last 10 are harder to lose.

The headaches have subsided and most of the rash and itching have gone. I still have trouble walking long distances. My ankles still swell quite a bit if I am on my feet to long.

That is it for now.

Take care and thanks for all your support!!!!!!

Jimmy B.

11/5/2006 Life and Time of a Typical Cycle of IL-1 Treatment

Page # 2

What are the side effects of IL-2 therapy?

IL-2 therapy can cause a number of side effects including: low blood pressure, fevers, nausea, vomiting, diarrhea, infection, chills, swelling and weight gain, confusion, skin rashes, and changes in your liver and blood chemistries.

Fortunately, they can prevent and treat these side effects as they arise. A couple of hours before your treatment begins, you will begin taking three medications to help prepare your body and reduce your chance of developing fevers, chills, and nausea. During the course of your hospital stay you will receive antibiotics to prevent you from acquiring any infections. If you experience low blood pressure, they will administer fluids or medications to raise your pressure and make you feel more comfortable. Medications are also available to reduce skin rashes and prevent itching.

How many doses of IL-2 will I receive?

In general, you will receive as many doses of IL-2 as you can safely tolerate—up to a maximum of 15 doses over the period of your stay. Doses are given approximately every 8 hours and each dose takes around 15 minutes to administer. A nurse will draw your blood every morning and the medical staff will evaluate your status throughout the day. During treatment other medications and fluids can be given through the PICC line.You will receive 2 cycles of IL-2 therapy given 3 weeks apart. Each cycle consists of about 5-7 days of in-hospital treatment. A CT (computed tomography) scan is taken 4 weeks after the completion of the first course (2 cycles). If the scan shows a response to the therapy, your physician may recommend that you come back for additional courses.

I am at the stage where I have to wait 4 weeks to have a CT scan done. So, I’ll be home for Christmas.

Take Care

Jimmy B.

11/5/2006 Life and Time of a Typical Cycle of IL-1 Treatment

Page # 1

What is Il-2

IL-2 is a type of natural protein, called a cytokine, produced by the body. It stimulates the white blood cells known as T-lymphocytes (T-cells) to grow and divide. T-cells are an important part of the body’s immune system. Giving IL-2 in highdoses stimulates the patient’s immune system to better recognize and destroy cancer cells. High-dose IL-2 is an FDA-approved, inpatient therapy to treat metastatic melanoma (advanced skin cancer) and metastatic renal cell carcinoma (advanced kidney cancer). Metastatic disease refers to cancers that have spread beyond the original site to additional tissues and organs.

What are the benefits of IL-2?

High-dose IL-2 has resulted in disease regression in 15% to 20% of patients with advanced melanoma and advanced kidney cancer. About 6% to 8% of these patients experience lasting or complete regression of all disease.

What happens when I arrive at the hospital?

IL-2 is an inpatient therapy. On your first day, you will check in on the second floor of the Hillman Cancer Center (5115 Centre Ave). Once admitted, you will have blood drawn for routine tests and introduce you to a nurse who will record your vital signs and conduct a brief medical interview. You will then receive your paperwork and be directed to the Admissions and Testing at the Shadyside Hospital (5200 Centre Ave). Upon arrival, the floor clerk will direct you to the waiting room to have a PICC line put in.The nurse will call your name and you follow him to insert your PICC line. The doctors will stop by to answer any questions and to discuss the placement of the Peripherally Inserted Central Catheter (PICC) line. The PICC line is a small, flexible tube inserted into a vein in your arm and threaded upwards towards your heart. The line is usedto administer IL-2.Once the PICC line is put in, you will go back to Admissions and Testing to receive your room number. You then proceed to your room.

How is IL-2 given?

Once you are settled into your room, one of the nurses will also provide you with a small pouch to wear around your neck. This pouch contains a box that is connected by wires to adhesive patches on your chest. It enables the dedicated Telemetry Service to monitor your heart rate and rhythm at all times during your stay. You will then begin to receiveIL-2 therapy.

11/05/2006 Off to have some blood done !!!!!!

Well, the last two nights have been rough. I didn’t get much sleep due to the side effects of the chemo. I gained about 30 lbs. of water weight again and my skin won’t stop itching. I also had coughing fits in the middle of the night causing me to toss and turn to the point where I went downstairs to sleep on the couch so Dee would get a good night of sleep. I got very restless. Things were getting out of control so I decided to do something to jump start my body to start losing the water weight. Going against the Doctors advice, I took lasix pill last night. What Is lasix?

Lasix is a loop diuretic (water pill) that prevents your body from absorbing too much salt, allowing the salt to instead be passed in your urine
Lasix treats fluid retention (edema) in people with congestive heart failure, liver disease, or a kidney disorder such as nephrotic syndrome. Lasix is also used to treat high blood pressure (hypertension).

To help keep me hydrated, I been drinking plenty of bottled water. Let us see if this will put me on the road to recovery.

That is it for now.

Jimmy B.

12/4/06 I cried Uncle after the 8th dose of IL-2!!!!!!!

The 8th dose was all that I could handle. I could have pushed for one more dose, or even skipped a dose and then continued but I thought my health might be in jeopardy. My body could handle only what I thought possible. So, instead of saying please Sir, I want some more, I mustered up a loud Uncle!!!!!! The cardiologist wanted me to have the next dose, but I knew in my heart it would break me. So I drew the line in the sand and never look back. I figured that I had a 50/50 chance that the one extra dose would make a difference in the CT Scan. If the CT Scan shows shrinkage of the tumor, then I would push my body a little bit more. Everything hinges on the CT scan.

So Dee came for me Sunday December 3, 2006. I was all packed and was just waiting to get the PICC line removed and the discharge papers to arrive. I could not wait to get out of there. Confined to 12 by 12 room with a bathroom, bed, and shower for five days is no fun at all. I was climbing the walls. Well I finally got released around 1:30 pm and we were home by 7:30 pm. We stopped to have a bite to eat because there was no way I was going to cook . I was exhausted from the trip. But now I am well on my way to recovering from this round of Chemo.

That is it for now

Take Care

Jimmy B.

12/2/2006 Sorry the computer was off line for a couple of days

I will be starting my 8th dose this morning. I am at weight of 239.6 lbs. So this my be my last dose. The first round I tipped the scale at 243lbs.

The swelling is not as bad and I am trying to keep up with lubriderm for my ankes and legs.

Time will only tell.
ttfn

Jimmy B.

11/30/2006 on to round 4!!!!!!

I start round 4 at 11:30 pm. All is quiet on the western front.

Jimmy B.

11/30/2006 It looks like we are on for round 3!!!

So far, so good. The side effects are quite subdued so far.Round three is slated for 3:30 pm. Not much to talk about. What is going on with Kodak? I heard that GMTO is being broken up. Is that true?

Any information would be greatly appreciated.

Jimmy B

11/30/2006 Got the second dose!!!!!

I got the second dose and i am waiting to see what side effects I will get. Right now I am flushed and have a rash on my arms and legs.The swelling is just starting to make a difference.

That is it for now

Jimmy B.

11/30/2006 First dose went quite well.!!!!!

I received the first dose at 11:25 pm last night. I prepared myself by drinking a ton of water and kept my feet raised when I am not sitting around. I also Lubridermedmy feet and ankles to make my skin more elastic.
The next dose is at 7:30 am and I believe it is a go.
I will try to keep you informed as I go.

Love

Jimmy B.

11/29/2006 I am ready for another round of Interlukin –2!!!!!!!!!!!

We left Rochester about 4:00 am and arrived in Pittsburgh at about 9:00am. I thought my appointment was at 9:00 am but it wasn’t until 10:30 am. So Kay, my mother-in-law and I decided to have breakfast at Ritter’s Diner. We both ordered eggs and bacon with a side of home fries and whole wheat toast.

After breakfast we checked in at the Hillman Center and had my blood drawn at that time. We were then escorted into the holding pen for patients until Pam was available. She is one of the physician assistants that are following my case. She gave me the once over and asked me if I had any questions at this time. I asked her jokingly if she had found a replacement for me, for this second round. She said no and proceeded to give me my marching papers for Shadyside Hospital. You know the ones that they forgot to give me the first time through.
She said I have an appointment at the Diagnostic Imaging –Registration at 12:30 pm to have a Picc put in.

So we headed to the waiting room in hopes that they would take me early and put the picc in. Well that wasn’t the case. We sat there for an hour and a half until I was called.It gave me a chance to cat nap while Kay did here crossword puzzles.

When they finally took me in, my electronic medical record was not entered and they could not start the procedure. It seemed to be Deja Vu all over again. I needed to go to Registration and Testing before going to the Diagnostic Imaging –Registration. Pam sent me to the wrong place first. Now, I think I am getting the hang of this Registration. After the Picc was put in my arm I had to go back to Registration and Testing to get my room assignment (Main section, room 724). It was now about 2:00 pm so Kay and I stopped in the cafeteria to get a bite to eat before we went up to the room.

So I missed the 3:30 start (I am Very upset –NOTTTTT) so I am starting my treatment at 11:00 pm. Freedom From Miss Daisy ( My IV pole) for a couple more hours.

That is it for now.

Take Care,

Jimmy B.

11/28/2006 It’s back down to Pittsburgh for round two of the Interlukin-2

Thanks to my Mother in Law (Kay), she will be escorting me this time to the Hillman Cancer Center. I could not find anyone to take my place, so it looks like I will have to play the Pop and Dough Boy. I will be there for 5 to 6 days. I will try to stay in contact during my treatment.

Take care,

Jimmy B.

11/22/2006 Happy Thanksgiving!!!!

When we count our many blessings; It isn't hard to see that life's most valued treasures are the treasures that are free.

For it isn't what we own or buy that signifies our wealth.

It's the special gifts that have no price: our family, friends and health.

I'd like to take this opportunity to tell you just how much your friendship and love means to me.

Many of us have lost dear friends and loved ones this past year and our country as a whole has suffered great losses also.In times like this, it gives us a chance to stop and reflect and think about what is really important to us in this life;
Just how precious and fragile it is, and to not waste what time we are given with the special people in our lives.

For myself, it is the gift of family and friends that are the riches in my life.

Those precious times that we hold dear to our heart and memories and special moments that can never be replaced, neither by time nor all the wealth in the world.

Whether you have planned a grand feast surrounded by friends and family, an intimate candlelight dinner for two, or a simple frozen dinner or takeout, it is not really the edible food, but rather who we share them with that counts most of all, and to me, this is the true value and meaning of Thanksgiving.
I will be thinking of each and every one of you during this season of Thanksgiving, and even though we may be separated by miles, you will be close to me in my heart.

I give thanks for you all, friends and close loved ones.You have touched my life in many ways and I am a very wealthy individual for this.

For those that have passed on to be with the Lord, I know there will be a special place for you in the hearts and minds of many of us as we observe Thanksgiving this year.

Love

Jimmy B.

11/17/2006 The trip was quite non-eventful

This time around, the trip was quite non-eventful. My appointment was at 3:00pm but didn’t see Dr. Kirkwood until 5:00 pm. He said this round I would have a cardiologist on board for the therapy. He also gave me a prescription for Lasix. This will help me shed the water weight gain from the last round.
I ended up staying at the Family House on Neville Street. It is about 8-10 blocks from the Hillman Cancer Center. There is a UPMC Blue Shuttle that takes you to all the other Shady houses and hospitals. (13 stops in all).

The weather could have been better. It was quite rainy so I dinner at the local Boston Market near the Hillman and then caught the shuttle back to my room at the Neville family House.

Traveling home back to Rochester was quite rainy. So, I had a leisurely breakfast at Ritter's Diner and was on the road about 9:30 am. I pulled into my driveway about 2:00pm

That is it for now. I go back to face the second round on November 29th. I just can't wait to do it all over again. Does anyone care to take my place? Hey!! the hospital food wasn't that bad.

Take care for now.

Jimmy B.

11/15/06 On the Road Again!!!!!!!!!

11/15/06 On the Road Again!!!!!!!!!

Going back to Pittsburgh for a checkup and blood work. I am making the trip a sleep over. Fatigue from the Chemo has set in, so I will stay at Shady House.
Also my appointment is at 3:00 pm so there is no rush to get there.
My life is just about back to normal except for the head aches and swollen ankles. I am down to 222.1 lbs. and need to get to 214.
I may make a stop to see Margaret and Caroline at the Shantley Gardens. Won't they be surpise to see me.

That is it for now.

Take care

Jimmy B.

11/9/2006 I’m Still Alive!!!!!!!!!!! (IL-2 Therapy)

Sorry for being off line for so long. This therapy really knocked the socks off of me. To try to put it in perspective, I was battling the side effects from Saturday November 4th to Monday evening November 6th. It was quite ugly. I gained 30 lbs. of water weight and my kidneys were barely functioning. They gave me a dieretic to help shed some of the water but waited until Monday to do so. To this day I don’t know why they waited so long. I guess they were hoping that my kidneys would kick into gear.

I looked so fat, that I could have passed for being pregnant. I looked like Tim Allen when he gained weight to become Santa Claus. The only problem was, it was quite painful. My ankles were as wide as my thighs. My toes were smashed together and I formed water blisters on the instep of my left ankle. My belly was so bloated that it felt like someone was sitting on your chest and would not get off. I use to get that feeling when I would fight with my brother Chuck. He would pin me down and sit on my chest until I said "uncle". He would get me so angry.

Another side effect was a chronic head ache. You know the kind that won’t subside even while taking acetaminophen. They gave me morphine for the head ache and that did not take the edge off it.

Anyway, I hope this paints a vivid picture in your mind. And guess what!!!

I get to do this all over again in 21 days. Fun, Fun, Fun!!!!!!!!

So they released me at about 6:00 pm with two portable urinals in hand to deal with bathroom situation on the way home. Guess what, not even 500 feet from the hospital entrance, I had to go. There was no stopping me.

This went on for hours until we got back to Rochester at about 11:30 pm. Boy, it was nice to sleep in a comfortable bed and not being wakened every 2 hours. In the hospital, I felt like I was going through a Marriage Encounter Weekend. It was one of things Dee and went through to get married in the church. It was weekend from hell!!!!!!!! I think they did it just to try to split up couples before they tie the knot. See if you are fully committed to the marriage.

So the next 3 days we monitored my weight and vital signs.Monday at the height of my porky-ness, I weighed 242 lbs. The next day my weight had dropped to 230lbs. Today, I weigh 226.7 lbs and my ankle are about 4 inches in diameter. I need to loose another 15 lbs, to get to my pre-therapy weight. And the Doctors said that everything would be back to normal in two days. To that I say, Lets switch places with no bed pans.

My head aches are slowly starting to subside and based on my calculation, it will take another 5 days to reach some normalcy.

That is it for Now
Jimmy B.
P.S. Thanks for all your support

I made it through the 7:00 am dosage. (IL-2 Therapy)

I made it through the 7:00 am dosage. It was an another bumpy ride trying to get all your dosages in. The ploating came back very suddenly and I lost my ability to breathe normally. It comes on so sudden. The Cardiologist took some EKGs and found them to be irregular.He was afraid if we continued, that it might damage my heart so they stopped the trial after 8 dosages were completed out of 14. So now I will let my body heal and prepare for the next IL-2 in 21 days. I was told that completing 8 was not so bad. That it was the average Number of doses of a person able withstand this trial.
I am looking forward of going home to my wife and Kids
Dee will be driving down Saturday and If I get my papers, we will go home that night.

Take care

Jimmy B.

I had a rough night of it!!!! (IL-2 Therapy)

I started to retain to much fluid. It was causing weight gain and my breathing started to get very heavey. So I skipped the 11:00 pm dose because I was not capable of handling it. So they gave me the night off and I tried to take full advantage of it. I had trouble sleeping, so I got about 3 hours of shut eye. The bloating began to subside so I think I will be back on tract for my dosage at 7:00am.

That is it for now.

Take care

Jimmy B.

I am slated for round 4 at 11:00pm

I had to get two doses of demerol to stop the chills. I am starting to get this down to a science.

What is really strange is that after the 3rd dose, they came into my room with Holy Communion. God works in strange ways. Like my day nurse's name is call Dee like my wife and my night nurse's name is Trina. That is my wife's best friend from the U of R.

Melissa, Stopped by to see how everything is going. She is so bubblely and has the best attitude I have ever seen.

Well I must go back to my room to prepare for the next round.

Take Care

Love you all!!!!!!

Jimmy B.

I made it through another round (# 3).

I should start having the side effects about two hours after they administer the IL-2. It takes about 15 minutes to get the IL-2. The side effects are chills and red rash.
Everybody is so nice here. I got my first wheelchair ride down to the have an echo done on my heart. They ultrasound it to look for any problems.Now I know how women feel like when they have their ultrasound.But, I don't think I could handle Child birth. I hate cramps!!!!!!!!!!
I want to thank each and everyone that are sharing my experiences. It is nothing like being on the frontline of the battle of your life.Your Support is greatly appreciated. Say hello to everyone at Eastman Kodak, Long Island, Texas, Florida,Georgia,Mass. and Colorado and to anyone I missed. I think about you guys every day.

Take care and I will be back on after my side effects subside.

Jimmy B.

Next round of Chemo

The next round of IL-2 is at 3:00 pm. I got the go ahead from the cardiologist. Round 3 with Mike Tyson. I hope he doesn't bite my ear off.

I will Keep you Posted.

Jimmy B.

11/2/06 A rough First dose of Interlukin-2.

I was amitted about 2:00 pm with a little trouble securing a room. We were sent to three different waiting rooms 2 different times. The problem, no papers.
Any way, I received my first dose at 4:30 pm and the tremmors started at about nine (9:00 pm). It felt like someone was sitting on my chest and would not get off. They said my EKG showed some diffeences from the baseline and said I might have had a mild Heart attack. I also looked like a lobster. Red hives all over. I hope to catch a picture so I can post it. It looks like I spent to much time in Mexico.
So, they skipped the next dosage that was planned at 11:00 pm so I got a half way decent sleep. They opted to start the next dose at 7:00 am this morning and as soon as the shakes began (About (9:00 am)the gave me demerol and the shakes subsided in about 15 minutes. I am able to get around so I stopped at the Computer room. to make my entries. I am in room 746 west wing just passed the President (Bush).They are taking great care of me and they don't hesitate to stop if things look out of place.

That Is it for now.

Take Care

Jimmy B.

10/31/06 We are off to see the Wizard

We are off to Pittsburgh to start the toughest chemo to date.

All I can say is:

“Hit me with your best shot, fire away” Pat Benatar
Well you're the real tough cookie with the long history
Of breaking little hearts, like the one in me
That's O.K., lets see how you do it
Put up your dukes, lets get down to it!

Hit Me With Your Best Shot!
Why Don't You Hit Me With Your Best Shot!
Hit Me With Your Best Shot!Fire Away!

You come on with a come on, you don't fight fair
But that's O.K., see if I care!
Knock me down, it's all in vain
I'll get right back on my feet again!

Hit Me With Your Best Shot!
Why Don't You Hit Me With Your Best Shot!
Hit Me With Your Best Shot!Fire Away!

Well you're the real tough cookie with the long history
Of breaking little hearts, like the one in me
Before I put another notch in my lipstick case
You better make sure you put me in my place

Hit Me With Your Best Shot!
Come On, Hit Me With Your Best Shot!
Hit Me With Your Best Shot!
Fire Away!

Hit Me With Your Best Shot!
Why Don't You Hit Me With Your Best Shot!
Hit Me With Your Best Shot!
Fire Away!

Take Care
Jimmy B.

10/30/06 Melanoma 101 based on the Interlukin-2 Therapy

Page # 2

Dosage:

“One-hundred forty-seven patients received IL-2 720,000 IU/kg every 8 hours (four studies), 118 patients received 600,000 IU/kg every 8 hours (three studies), and five patients received either 360,000 or 540,000 IU/kg. Patients treated with the higher doses of IL-2 received fewer doses; consequently, the median cumulative amount of IL-2 for the first course of therapy was similar for each dose level (Table 3). Clinical factors such as PS did not influence the amount of IL-2 delivered. Patients received up to five courses of therapy (mean, 1.4 courses; median, one course), with 81 patients receiving more than one treatment course. Information on the number of patients treated and the amount of IL-2 administered per treatment course is listed in Table 4.”

Results:

“The median duration of response for all responders was 8.9 months. Response duration curves according to response classification are displayed in Fig 1. The median response duration for patients who achieved a CR has not been reached, with 10 of the 17 CRs ongoing at 24 to 106 months. The median duration of PRs was 5.9 months. Two patients who achieved a PR had ongoing responses of 55 and 92 months' duration. Although these patients were classified as achieving a PR and had persistent scan abnormalities at follow-up evaluations, they remained progression-free without further treatment. The median PFS time for all responding patients was 13.1 months. The median PFS time for patients who achieved a CR has not yet been observed but is at least 54 months. Fifty-eight percent of the responders remained progression-free at 12 months. The median PFS time for the patients who achieved a PR was 8.3 months. In 37% of the PR, the PFS time exceeded 12 months. There were no relapses in responding patients after 30 months.”

CR= Complete Response
PR= Partial Response
PFS= Progression Free Symptoms


Class will take 15 minutes recess!!!!!

Take Care,

Jimmy B.

10/30/06 Melanoma 101 based on the Interlukin-2 Therapy

Page # 1

“MELANOMA POSES AN increasingly important health problem.

It is estimated that by the end of 1999, the lifetime risk of developing melanoma in the United States will have reached one in 75.1 Although surgery with or without interferon alfa (IFN ) therapy can be curative in stage I, II, or III disease, a large number of patients will develop distant metastases.

Disseminated metastatic disease is associated with a poor prognosis and a mortality rate of more than 95%. In several large series, survival correlated inversely with the number of involved organ sites, visceral involvement, the disease-free interval, and performance status (PS).2-4 Several treatment options are available to patients with metastatic disease, including single-agent dacarbazine (DTIC) chemotherapy, a variety of combination chemotherapy regimens, and combinations of chemotherapy with tamoxifen or IFN . DTIC chemotherapy produces responses in approximately 20% of patients, with a median response duration of 4 to 6 months, a 5-year survival rate of 2%, and a median survival time of 6 to 9 months.5 Although single-institution phase II studies and small phase III trials have shown that combination chemotherapy, or the addition of either tamoxifen or IFN to DTIC chemotherapy, has potential benefit, no regimen has yet proved superior to DTIC chemotherapy alone.6-13


Interleukin 2 (IL-2), a T-cell growth factor, was first identified in 1976,14 and isolation of the cDNA clone was described in 1983.15

Subsequently, recombinant IL-2 (rIL-2) was shown to have potent antitumor activity in a number of murine tumor models.16 Based on animal model data, a high-dose IL-2 regimen was developed in which IL-2 was administered by short intravenous infusion every 8 hours, with or without lymphokine-activated killer cells.17,18 High-dose bolus IL-2, as a single agent, received United States Food and Drug Administration approval in 1992 after demonstration of durable responses in patients with metastatic renal cell carcinoma.19 In this report, we describe findings from a recently updated 270-patient database of metastatic melanoma patients treated with the same high-dose IL-2 regimen between 1985 and 1993.”

10/26/06 PM Got The Insurance Approval to Have the treatment down in Pittsburgh

PollyAnn just gave me the good news. I am going to Disney World to ride the famous Roller Coaster.
Heather Blair contacted me and we are on for the start of Interlukin 2 on Wednesday November 1. Warmups are at 9:00 am and the game begins at 3:00 pm. I got a bedside seat at 50 yard line. I can’t wait to see the cheerleaders.

Let the games begin!!!!!

Jimmy B.

10/26/2006 Finals Week… Tests are completed. Yeh!!!!!!

I just finished my Nuclear (Thallium) Stress Test.

A nuclear stress test lets doctors see pictures of your heart while you are resting and shortly after you have exercised. The test can give information about the size of the heart's chambers, how well the heart is pumping blood, and whether the heart has any damaged or dead muscle. Nuclear stress tests can also give doctors information about your arteries and whether they might be narrowed or blocked because of coronary artery disease.

How does it work?

This test is almost the same as the exercise stress test, except doctors will give you a small amount of a radioactive substance just before the end of the exercise part of the test. This radioactive substance is not harmful to your body or your organs.The results of the nuclear stress test can show doctors if the heart is not working properly while you are resting, exercising, or both. If the test shows that blood flow is normal while you are resting but not normal while you are exercising, then doctors know that your blood flow to your heart is not adequate during times of stress. The heart normally pumps more blood during times of physical exertion. If the test results are not normal during both parts of the test (rest and exercise), part of your heart is permanently deprived of blood or is scarred. If doctors cannot see the radioactive substance in one part of your heart, it probably means that section of heart muscle has died, either because of a previous heart attack or because the coronary arteries supplying blood to that area of the heart are blocked.

The other two tests were CT Scan and the Pulmonary Function Tests. I gave you the results for the CT scan. I think I passed the Pulmonary Function Tests.
Pulmonary function tests are tests performed to make measurements of how your lungs and airways function. Results from pulmonary function tests enable your physician to evaluate your breathing, make diagnosis, recommend treatment and follow your progress.DLCO – Lung Diffusion Capacity TestingThis test measures how well gases (oxygen) move through the lung and into the bloodstream. I got an 88 out of a possible 100. Hey a b+ isn’t bad.

Waiting to get approval for IL-2 treatment

Jimmy B.

10/25/2006 Major Set Back!!!!!

Yesterday while at the Rochester Oncologist (Dr. Pandya) office we received bad news. The cancer is spreading in my lungs quite rapidly according to the CT scans. There are now over 40 nodules ranging from 15 mm down to < 5 mm. No wonder I been having shortness of breath. I thought it was my lack of exercise. Dr. Pandya gives my prognosis a poor rating. I guess I won’t be getting a raise this year.
I have started the long term disability process with disbelief. My fight is not over for a long shot. I just need to speed up my trials to find the right one. I will be contacting Dr. Kirkwood today to see where we stand on the Molecular Profiling route. I feel I am in the race of life and second place is not an option. I am going for the Gold.

Stay tune things may get very interesting.

Take care

Jimmy B.

10/23/2006 Going to be a busy week!!!!!

Well, I got all my tests scheduled for this week. Today I go for a CT scan at 11:00 am. They seem to know me by name there. That is not good is it? Tomorrow, I see my Rochester oncologist. This is just to keep them informed. Wednesday, I go to Rochester General for a pulmonary test. To check out my lungs to see if they are in good enough shape to proceed with the Interlukin 2 therapy. Finally, Thursday, will be the stress test to checkout my heart. This test will be induced by some drugs. I won’t be put on a tread mill. It will take about 4 hours.
That’s my week in review.
P.S. I will keep you posted if anything comes up.

Take care Jimmy B.

This is the first step forward!!!!

An email from Arlet Alarcon to Kirkwood

Hello Dr. Kirkwood,

Please call me at your earliest convenience at any of the numbers below, so that we can discuss how to best help Mr. Jim Breitfeller.

Thank you,

Arlet

Arlet Alarcon, M.D.
Manager, Target Now/Horizon
Molecular Profiling Institute (MP)
445 N. 5th Street, 3rd Floor
Phoenix, AZ. 85004
(602) 358-8982 (direct)
(602) 358-8920 (fax)
(602) 909-7667 (cellular)

10/17/2006 The Molecular Profiling Institute Called Yeh!!!!!!

I just received a call from Dr. Arlet Alarcon from the Molecular Profiling Institute. She is the clinical coordinator at the Institute. She gave me some background on what they do and how it would pertain to my situation.
Here the Deal:They would take a biopsy of my tumor and run a genomic sequence on it to determine the pathways that the tumor is using to nourish itself with the blood supply using the supercomputer. Once they determine the pathways, they try to figure out what chemotherapy or drugs would shut down the pathways choking off the blood supply to the tumors. The tumors would slowly die. Easier said than done.

It sounds like Science Fiction.

All I need is to get buy in from Dr. Kirkwood.

Luke Skywalker Here I come!!!!!!!!

Jimmy B. Signing off

10/17/06 Need a cocktail treatment for malignant melanoma using a supercomputer.

There was a program on the CBS Evening News October 13 2006 with Katie Couric using supercomputers to analyze blood and tumor tissues. It would analyze the genomic makeup of the samples and then calculate what the best probable therapy treatment for that patient. The only problem was, it was set up for prostate cancer. The Researcher’s Name was Dr. David B, Agus.
So I emailed him:
Dr. Agus,I am presently a patient of Dr. John Kirkwood of the Hillman Cancer Center in Pittsburgh. I am in the battle of my life trying to overcome melanoma. I am 48 yrs. old just in the prime of my life. I have tried Interferon, Dicarbazine and CTLA-4 monoclonal antibodies therapies without any success. I saw your story on the CBS Evening News and was hoping that if I submitted my blood sample or donate a tumor, maybe we could get a handle on the treatment protocol for my cancer. Any Help would be greatly appreciated.
Here is Dr. Agus’s response:
JimJohn is an excellent doctor and I am happy to help in any way I can. Presently we do not have melanoma protocols in the database to do correlations. There is a group out of TGEN called MPI (molecular profiling institute) which does a Target now analysis:

http://www.molecularprofiling.com/products/target.cfm

the group is run by dan von hoff and is excellent. The data from this analysis can be used to help ‘guide’ therapeutic decisions.
Use my name if you would like when you call them.

Good luck

David B. Agus, M.D.Director,
Spielberg Family Center for Applied ProteomicsResearch Director,
Cedars-Sinai Prostate Cancer Center
8631 West Third Street, Suite 215ELos Angeles, CA 90048

Tel (310) 423-7600
Fax (310) 423-1998

Here is an excerpt of Molecularprofiling:

"The Molecular Profiling Institute's Target Now research program provides advanced tumor analysis for cancer patients whose disease has progressed despite having received first and second-line standard therapies. This unique analysis has resulted in some positive individual outcomes that are presently being validated in a clinical study.
Target Now offers advanced molecular tumor analysis and provides potential therapeutic options to cancer patients for whom several standard therapies have failed. These are patients who need a targeted approach to treat their cancer – now
Based on the molecular profile of a patient's tumor, our program generates potential treatment options that would likely otherwise not be considered. Target Now is going through a prospective clinical trial prior to wider availability. Cancer patients who have clinically progressed despite having received first and second-line standard treatments are now able to access an opportunity - not offered anywhere else in the country - to have their cancer sampled, profiled and assessed to determine if one or more drug targets may exist in their tumor tissue.
The physician report for Target Now patients is generated by our proprietary Personalized Medicine Expert System (PerMedEx). PerMedEx and the associated report assists the physician to more clearly link drug targets to the molecular profile of a patient's tumor and offers the associated references and abstracts to the supporting medical literature."

So I sent this information to Melissa in Pittsburgh and I am waiting to hear their response.

That is it for now.

P.S. You can't say I am not giving it the "Old College Try"

Jimmy B.

Results of early PROLEUKIN® IL-2 Clinical Trials

Metastatic MelanomaYear received FDA Approval 1998Number of Patients 270 patientsNumber of Trials 8Response In 16% of the patients, tumors shrank or disappeared as a result of PROLEUKIN® IL-2 therapy.
In 6% of the patients, the tumors disappeared completely.Results From these trials, it was determined that a patient whose tumors completely disappeared from the treatment remained cancer-free for a median of 4.9 years.

10/12/2006 Back to square one !!!

A couple of days ago, Dee noticed two new growths on my back. I was hoping for the best. Anyway, we got confirmation from the Hillman Center that it is 2 new tumors growing. This really stinks. I think it is time to take out the “Weed be Gone”. This is not what I was hoping to hear.
My batting is like the the NY Yankees, and they missed the playoffs. But there is one good thing, I saved money on car insurance by switch to Gieco. Only Kidding
So, it is on to the next trial. I am not sure what is going to be, but they mention Interlukin 2.

I am NOTTTTTTT throwing in the towel.
Jimmy B.

On the road again!!!!!

Back to Pittsburgh.I still have fatigue but I am managing it. What really bothers me is my right arm where they removed the lymph nodes. I can't get the swelling down which in turn puts pressure on my nerves.I have to baby it to try to bring down the swelling. Some days it feel like it is caught in a vise. I am going ask if they can drain the excess fluid if possible. I should be back on in a day so.

"All Quiet on the Western Front"

Jimmy B.

9/27/06 Good News From The Hillman Cancer Center!!!!!!!

Saw the Physican Assistant, Mellisa. It appears that the CTLA-4 has stimulated my immune system. In the pass week, I noticed that there was redness around the area where my tumors are located. Also it is becoming quite tender in that area. This is Great news!!!!! It appears that the treatment my have kick started my immune system. The only way we will know for sure is another CT scan. That is not scheduled until November 29th .
I sure hope this isn’t a false positive. Anyway, They gave me an antibiotic just in case it is an infection.
I am still quite fatiqued but I am learning to live with it. I just pretend that I am in kindergarden again. I have now set nap times. Hey, you got to do what you got to do. What’s great about it, there is no kicking or biting going on, and no time outs. I just turn on “The Days of My Live” and I instantly get a bedtime story. When I start to fall asleep, I just click off the TV with the remote.

That is it on my end.

Until then, Take Care.

Jimmy B.

9/21/2006 Back in town!!!!

The trip was quite non eventfull.It rained most of the trip and I arrived about 10:00 am. I used valet parking this time because I knew I was not staying very long. So, I jumped out of the van and grabbed my napsack and a bag of baked goods. You know the ones. I had promised that I would bring some of Jimmy B’s baking to good the people of the Hillman Center. First stop was Joyce in the library and resource center. I just wanted to stopped in to say “Hello” and give her a piece of my new recipe. I am calling it “Vermont Apple Crumb Cake”. I know that I don’t give out recipes that often, but since it is apple picking season in Western New York, I thought that I may share it with you. Here is goes.
By the way, My wife gave it two thumbs up.
Ingredients:
The Cake Part:
2 cups flour
1 cup sugar
2 teaspoons baking powder
1 teaspoon salt
2/3 cup vegetable oil
1 cup milk
2 eggs
2 teaspoons vanilla
6 cups of sliced Granny Apples
¾ cup sugar mixed with 2 teaspoons cinnamon

Combine the first eight ingredients and beat for 3 minutes. Pour intoa greased 9 by 13-inch pan or two 8 by 8 square pans. Arrange the apple slices on top of the batter. Then sprinkle with sugar-cinnamon mixture evenly on top of the apples. Bake at 350 degrees . for 20 to 25 minutes. In the meantime, prepare the crumbs that will go on top of the cake.

The Crumbs Part :
2 ½ cups flour
1 cup light brown sugar
2 teaspoons cinnamon
¼ teaspoon allspice
1 cup butter (2 sticks melted)

In another large bowl, whisk together the remaining 2 ½ cups flour,brown sugar, cinnamon, and allspice. Pour melted butter over the flour mixture with a rubber spatula until large crumbs form. Spread evenly over the partially baked apple cake and return to the oven for another 20 to 25 minutes or until the tester comes out clean. Cool completely on a wire rack.

Eat as is or serve with vanilla ice cream.

You Know what they say,"An apple a day keeps the doctor away".

I bet you can’t just eat one piece.

Enjoy!!!!!!!!!!!!

Next I saw Pam. She took my vital signs and some blood. It was all over in matter of minutes. Bev was working at the other hospital. So I left the cake with Pam and Heather.I hope Bev gets a piece of the cake.
Next I saw Brenda Cole, PhD , Licensed Psychologist. Round 2 of the Meditation Thrapy. The visit lasted for and hour and I was out on the road back to Rochester by noon.On the way home I did hit some road work as I was arriving into Buffalo. They were paving I 90 for about a 2 mile stretch.

I arrived in Rochester a little after 5 pm.
Back to make the journey another day. That day will be next Wednesday.
Now I know how a trucker feels like.

Take care,

Jimmy B.

9/19/2006 Back to Pittsburgh for some tests.

Well, I will be on the road again , Wednesday the 19th for a day trip to Pittsburgh. This past week, with the New CTLA-4 trial, has sent me for a loop. I wake up exhausted.I have to push myself to get out of bed. Along with the fatigue, my muscles ache like they have lactic acid in them. Well, no pain no gain.In the meantime I think I’ll take a nap.

You are in touch , when I am in touch.

Take care.Jimmy B.

The trip to Pittsburgh for the new Clinical Trial CTLA-4. (9/13/06) Day 2 Page 2

It is going to be a long day. The first hour went fast, I completed the tradelink application for our 401 K retirement plan. The second hour I practiced the Spiritual Connection and fell asleep for the third hour. For lunch we went to the café and ate our RB sandwiches and you guessed it, split a oatmeal rasin cookie. There goes my diet!!!!!! Miss Daisy came along and just stood there. You should have seen all the looks I got when I wheeled in Miss Daisy. It was like they never saw a person with their IV fluids hanging on a rack before.The next couple of hours dragged and I was ready to rip out the IV to get the show on the road. Anyway, we got out on time and Dee would not let me drive home. Well I complained all the way to the State line. So I had to reverse my tactic. I decide to keep my mouth shut and all of a sudden Dee asked me to drive the Buffalo leg of the trip. I know she hates that leg of the trip. There are a lot more trucks on I 90. So I gladly said “Yes”. We switched at the nearest rest stop. We pulled into the our driveway about 10:00 pm. Safe and Sound.Today, I woke up exhusted.

Side effects were minimal.

We shall see

The trip to Pittsburgh for the new Clinical Trial CTLA-4. (9/13/06) Day 2 Page 1

I got up around 6:30 am to prepare for the new trial. I was quite a nervous. We both got ready and went down to the kitchen to make some coffee and breakfast. Dee and I were still full from our night out at Ritter’s Dinner. Breakfast consisted of oatmeal, coffee, and crumb cake. I love my sweets!!!!!! We then went back up stairs to pack and get ready to check out. We needed to strip our beds, clean the bathroom and take out the garbage. It did not take long because we were there for a very short stay.
I need to be back at Hillman about 9:30 am to get the CTLA-4 Treatment. The antibodies are frozen and have to be thawed slowly at room temperature. It takes about 2 hours. So guess what time I get there. Not 7:00, not 7:30 and not even 8:00 am, but at 8:30. I hate to be late!!!!! So, Bev and Heather greets me and shows me to the bed where I will be staying in for the next 6 hours. Heather also introduces me to a woman in the next room named Clair from Ohio. Clair has started the CTLA-4 Trial three months earlier. Heather is hoping this will calm my nervousness. We introduce each other and our spouses. I began to ask many questions. Ahhhh!!!!!! Someone with melanoma like me and is fighting the same battle. They first detected melanoma 2 ½ years ago on her feet. It started from a mole. She had 3 toes removed but it had spread to her lymph nodes and than to here liver. She had gone through interferon, interleukin, and dicabazine. She is now trying the CTLA-4 Trial and has been on it for about 3 months with minimal side effects. She now at the point that she will have a CT scan to see if the gotten the cancer under control. I pray that it is working. They are dairy farmers and they just sold off all of the cows. I did not have the courage to ask if it was a retirement move or a financial move. I am hoping for the best for them.
We say our good byes and I retire back into my room. Dee sets up her computer and begins to work. I get my IV put by Bev. The room is a shared room and in the other bed is an older gentleman (80 yrs) with ocular melanoma from Pa.
Ocular melanoma is melanoma of the eye. Melanoma is a cancer that develops from cells called melanocytes. Melanocytes produce the dark-coloured pigment melanin, which is responsible for the colour of our skin. These cells are found in many places in our body including the skin, hair, and lining of the internal organs, including the eye.Most melanomas begin to grow in the skin, but it is also possible for a melanoma to begin in other parts of the body, such as the eye. Ocular melanoma is the most common type of cancer to affect the eye, although, generally, it is still quite rare. Most cases are diagnosed in people in their 50s.
He was diagnosed with it 12 years ago but it has spread to his liver. He owns a construction firm and was out on the sites everyday. His support team consisted of his daughter and husband who is a retired family physician . They were very friendly group of people.
I started my CTLA-4 treatment at 9:15 am at 100 ml/hr and I had 500 mls hanging on my rack (Miss Daisy). I call the rack Miss Daisy because I have to take it with me where ever I go which includes the bathroom. I am driving Miss Daisy!!!!! This will take us to 3:15 pm and then they draw blood of a pk study an hour later. Sooooooooo, we won’t get out until about 4:30 pm and home until 10:00 pm

The trip to Pittsburgh for the new Clinical Trial CTLA-4. (9/12/06) Day 1 Page 2

Anyway, Bev, then took my blood work. There were quite a number of vials to be filled. It was approaching 10. Dee could not believe how many tubes I had to fill.It was now approaching 12:00 noon where I was suppose to meet with Brenda (Behavioral Medicine) a shrink. I had signed on to do a study on how people cope with cancer. Hey, they were going to pay me $100.00 to go through the study and I thought it was a good way to help them to help others and to help us defray the cost of travel expenses. A win, win proposition. Anyway, we were still waiting for Melissa to stop by to give me a physical exam.
Well, I ended up starting my first session with Brenda. I was a bit nervous not knowing what she and I would talk about. Session 1 “A Time of Spiritual Connection” during difficult times. We talked for about 45 minutes and then we did some meditation for ten minutes recalling a spiritual connection in the past. These special moments can help sustain us, strengthen us to see clearly what is most meaningful in our lives today. It helps ground us to reality. Anyway, the session went well.
We then went back upstairs to have my physical with Melissa. By the time everything was done, the day had slipped away. It was now 3:00 pm and we needed to check into the Shady House. We checked in room 501 would be our home for the next couple of days.So we jump into the elevator and press floor 5. As we go up, the elevator makes a sound like the AFLAC duck. You know the one that quacks. I guess it is for the seeing impaired. Our room faces Centre Ave. with the hospital across the street. Looking west, you can see the Hillman Center and the pedestrian bridge. It is about a 1/1/2 blocks away. I then give Dee a tour of the House, the kitchen, the dining room, the computer room, and the laundry room. This is her first visit to the Shady House.
We decide to go to Ritter’s Dinner for an early dinner. I have the turkey club with home fries and Dee has the chicken pita with BLT and cheese. Dessert we have our favorite, homemade apple pie with vanilla ice cream. We split a piece. That is why I have gained 6 pounds. I can’t say no. To work off the dessert, I take Dee to the local grocery store about 5 blocks way. We need to pick up some Imodium AD just in case I have bad side effect from the CTLA-4 Treatment.As we start to walk back up Centre Ave. we get panhandled. I tell Dee that she should not make the trip to the store at night or alone. She agreed. We also pass a Panrea Breads and a Starbucks. Good places to stop in the future.
We arrive back at out room about 6:00 pm. I crash on the couch, while Dee does some computer work. I end up going to bed at 9:00 pm but have trouble going to sleep. The noise from all the activity in Centre Ave goes on all night. Buses, ambulances, horns, I don’t know have people can sleep in the city. It is just too noisy.

The trip to Pittsburgh for the new Clinical Trial CTLA-4. (9/12/06) Day 1 Page 1

In anticipation of the wet drive to Pittsburgh, I decide to upgrade my windshield wipers. So off to PEP Boys I went and picked up winter blades the previous day.
We left right on time (5:30 am. Traffic was light up until we reached the interstate 90 tolls just outside of Buffalo. Traffic was heavy, but was moving at a fast clip. As soon as we reached the 290 north to Buffalo/ Niagara Falls exit, it thinned out and I was able to put the van on cruise control. By now it was early morning and you could see the sky getting very dark. We were heading into a weather front. It started out drizzling and gradually got harder. I hate driving in the rain. I don’t like to hydroplane. Well, by the time we hit the state line it was coming down in buckets. At times, you could not see two car lengths in front of you. This went on for miles and miles. I was glad I had changed the wiper blades the day before.
To make a long story short, we got to Pittsburgh around 10:30 am. It was still raining quite hard. I decide to park in the Shadyside Hospital’s parking garage so we would not have to move the van after day one’s appointment, and just across Centre Ave. is the Shady House where we would be staying. The parking garage was packed. We ended up on the roof to park. Needless to say, we got drenched.
The Hillman Cancer Center is about a block and half away from the garage, but is attached to the hospital via pedestrian bridge. Similar to the Kodak’s Bldg 83 – 81 bldg bridge. So we knew we could get to the Hillman without going outside. This would be greatly beneficial during the winter months. So we mottled our way through the hospital until we came to the bridge.On the Hillman side of the bridge, there is a small café where we had coffee and home made crumb cake. We were early, so we took a break before we signed in. I called the Shady House to make sure we had a room for the night. We did.
Then we proceeded to the second floor where the outpatient center is. Pam and Beverly greeted us with great big smiles and asked us how our trip down was. We replied, “fine”.Bev took my vitals signs. I had gained 6 pounds in the last two weeks. I was caught. I been baking up a storm and eating for two. My sister Jody had just completed a visit and we cooked, baked ,and ate like there was no tomorrow. We had just bought a recipe book at Bauman’s Farm market and had to try some recipes.

9/12/06 Off to Pittsburgh for the new Clinical Trial CTLA-4.

It should be the ride of my life.

Joke of the day!!!!!!

Thanks to Bill Mills
A lawyer runs a stop sign and gets pulled over by a sheriff's deputy. He thinks that he is smarter than the deputy because he is a lawyer from New York and is certain that he has a better education then any cop from Houston. He decides to prove this to himself and have some fun at the deputy's expense.Deputy says, "License and registration, please."
Lawyer says, "What for?"
Deputy says, "You didn't come to a complete stop at the stop sign."
Lawyer says, "I slowed down, and no one was coming."
Deputy says, "You still didn't come to a complete stop. License and registration, please."
Lawyer says, "What's the difference?"
Deputy says, "The difference is, you have to come to complete stop, that's the law. License and registration, please!"
Lawyer says, "If you can show me the legal difference between slow down and stop, I'll give you my license and registration; and you give me the ticket. If not, you let me go and don't give me the ticket."
Deputy says, "Sounds fair. Exit your vehicle, sir." At this point, the deputy takes out his nightstick and starts beating the ever-loving crap out of the lawyer and says, "Do you want me to stop or just slow down?"

Open the envelope Please!!!!!

I have got all that I need! MRI is negative. CT scans do not show anything unexpected. Your blood work is looking great! What time should I put you on the schedule for on Tuesday? I figured around 1pm that way you could drive in. You will report to Pam in the GCRC like you did before when you were with her before. We will do labs and exam there. I did not send you a calender because I could not get the program to copy and paste into Word. I will have it for you on Tuesday.Hope all is well. Talk to you soon!

~Heather

Waiting for News!!!

I am on pins and needles waiting for the results of the scans. I hope it will be good news.

I'll keep you posted.

Hanging 5 in the tube today.

Hanging 5 in the tube today.

Surfs UP!!!!!!!

At 8:49 am, I received a call from Dr. Steven Rosenberg’s Office!!!

I received a call from Dr. Rosenberg’s office this morning while I was at Dr. Marino’s office. Kathy Morton (Research Nurse) contacted me by phone and asked a few questions about my health. She went on to say if I go with the CTLA-4 therapy, it would take about 2 months to washout before I could try the Gene Therapy. They would also have to do a colon biopsy to check the colon for any adverse conditions from the CTLA_4. She then gave me her direct phone number if I want to pursue the gene therapy at a later date.

Cool, the ducks are lining up quite nicely.

Tomorrow I go for a CT Scan at 3:30 pm and a MRI at 5:30 pm. It will be a busy afternoon.

That is it for now.

9/5/06 Off to the Doctor’s Office this Morning

I will be off to Dr. Marino’s Office this morning. I will be having an EKG and some preliminary blood work done.

Just lining up My Ducks!!!!!!!!!!!!!!

am Contacting Dr. Steven A.Rosenberg at the National Cancer Institute in Bethesda, Maryland.
He is the lead the researcher on the Gene Therapy Trials.Log onto the CBS website for the story!!!!!!http://www.cbsnews.com/stories/2006/08/31/health/main1955526.shtml
The research team recently applied to the Food and Drug Administration (FDA) to try the new cells in about 100 patients. The FDA is expected to respond to the request by mid-September.
Dr. Rosenberg, I just got the news of your Gene Therapy Experiments. The initial results look somewhat promising. I applauded you and your team for making great strides in the cure for melanoma cancer.I am a cancer patient (48 yrs. old) under the care of Dr. John Kirkwood at the Hillman Cancer Center at the University of Pittsburgh. I have gone through a wide incision, lymph nodes removal, Interferon therapy, and Dicarbazine therapy without success. I am presently on track to start a clinical trial with CTLA-4 monoclonal antibodies September 13, 2006. I have some tumors on my right side of my back and some in each lobe of my lungs. I would like to be considered for your next round of Gene Therapy in the coming months if I have no response to the CTLA-4 treatment. Please let me know if you would need a copy of my medical records to date.Thanks again for the great work you are doing and I hope to hear from you in the near future.

Best Regards,

Jim Breitfeller

Scientists alter blood cells in attempt to treat melanoma Gene therapy stops cancer in 2 dying men

Scientists alter blood cells in attempt to treat melanomaGene therapy stops cancer in 2 dying men

BY LAURAN NEERGAARD, Associated Press
8/31/2006

WASHINGTON - Mark Origer entered the last-ditch experiment hoping to beat back his melanoma for a few months, long enough to walk his daughter down the aisle. He got far luckier: Almost two years later, his body shows no signs of the invasive cancer that starts on the skin.Government scientists rescued Origer and one other man with advanced melanoma by genetically altering their own white blood cells to turn them into tumor fighters.The treatment didn't help 15 other melanoma victims. So scientists are trying to strengthen it to work better.Still, the National Cancer Institute called its experiment, revealed Thursday, the first real success in the long quest for gene therapy for cancer - because it fought the disease's worst stage, when it had spread through the body, not just single tumors.And it did so in a way far different from today's standard options - by harnessing patients' immune systems to continually search out and kill tumors."It's not like chemotherapy or radiation, where as soon as you're done, you're done," said Dr. Steven Rosenberg, the NCI surgery chief who led the research reported Thursday by the journal Science. "We're giving living cells, which continue to grow and function in the body."Doctors can't predict how the therapy's first two successful patients will fare long-term. Melanoma, which kills almost 8,000 Americans annually, is notorious for returning years after patients think they've subdued it."I'm cured for now," Origer, 53, of Watertown, Wis., puts it gratefully.He recalls his doctors' wide grins when, just a month after his December 2004 treatment, his tumors started to shrink. By his daughter's wedding last fall, just one small cancerous spot remained, on his liver. Surgeons later cut it out. A checkup from NCI doctors this week confirmed that Origer is still cancer-free."I know how fortunate I am to have gone through this and responded to this. Not everybody's that lucky," he said.Cancer specialists praised the work, but warned that years of additional research are needed."Clearly this is a first step," cautioned Dr. Len Lichtenfeld of the American Cancer Society. "We have to be very cautious about not raising hopes too much."But he added: "It is exciting. It certainly is a proof of concept that this approach will work."More importantly, the gene therapy can be customized to create cells that should attack more common cancers, said Dr. Patrick Hwu, melanoma chairman at the M.D. Anderson Cancer Center of the University of Texas, who once worked with the NCI team.In a few months, the NCI team hopes to begin studying the approach in small numbers of patients with advanced breast, colon and other cancers.White blood cells called T-lymphocytes hunt down germs and other foreign tissue.But cancerous cells look a lot like healthy cells, making it hard for those T-cells to spot a problem.By 2002, Rosenberg had made a breakthrough. He found small numbers of cancer-fighting T-cells inside some patients with advanced melanoma. He literally pulled those cells out of their blood and grew billions more of them in laboratory dishes, enough to have a chance at overwhelming a tumor when they're pumped back into patients. About half significantly improve after this cell-transfer therapy.But few melanoma patients make enough cancer-fighting T-cells naturally to be spotted in their bloodstream, and T-cells that attack other cancers are virtually impossible to find. So Rosenberg and colleagues set out to create those tumor fighters from scratch.The scientists took normal lymphocytes - ones that don't recognize cancer - out of patients with advanced melanoma who had exhausted their treatment options. They infected those cells with a virus carrying genes that create T-cell receptors, essentially homing devices for, in this case, melanoma. (Different genes create receptors for other cancers.)"We can take a normal cell from you or me or any patient and ... convert that cell into a cell that recognizes the cancer," Rosenberg explained.Here's the key: When scientists infused the newly armed cells into 17 patients, only Origer and his fellow survivor maintained super-high levels for more than a year, and only their tumors gradually faded. In most of the other patients, only low levels of the tumor-fighting cells persisted for a few months.No patients suffered serious side effects, although they required a few weeks of chemotherapy to suppress their natural immune system and make room for the extra T-cells.Why did those cells flourish in only two people?"That's the critical question," said M.D. Anderson's Hwu.Picking the right lymphocyte to alter genetically isn't easy - there are many different kinds - or perhaps more precise T-cell receptors were needed for the cells to take root better and do the job, he suggested."These are all solvable issues," Hwu stressed, calling the study "one of the first documented, effective cases of cancer gene therapy working."

This might end up as one of my options down the road.

Response from Luis Camacho

Dear Jim,
Its good to hear from you. I am happy to see you are in great hands and have tried the best forms of therapy now available.

Please feel free to call me at (713)745-5252 if you have any questions or would like my opinion.

Luis

Luis H. Camacho, MD, MPHAssistant Professor
Phase I ProgramDivision of Cancer Medicine
U. T. M D Anderson Cancer Center
OFF (713)745-5252 / FAX (713)745-5247

I will give him a call.

Can you believe this?????

I actually spoke to Luis Camacho back on October 24th 2005 through an e-mail. At the time I was a stage 2b. Anyway I have sent him a letter for any updates on his CTLA-4 trials.
Luis, we spoke through e-mail back on 10/24/2005. At the time, I was recently diagnosed with malignant melanoma and was not at the correct stage for treatment with CTLA-4. I have now gone through wide incision, interferon, removal of the lymph nodes, dicarbazine treatment without any success. I was also the wrong HLA typification for any vaccine trials. I will be starting CTLA-4 trial with Dr. Kirkwood at the Hillman Cancer Center in Pittsburgh. I am now sick enough, with tumors on my back and small nodules in both lobes of my lungs. Is there any more data or information on your CTLA-4 trials that you can share with me? Also, If I don’t respond to the CTLA-4 treatment, what kind of options do I have left? Any help with information would be greatly appreciated.

Best Regards,

Jim Breitfeller

CP-675,206, a novel monoclonal antibody, enlists the immune system to fight advanced melanoma

USAN TICILIMUMAB
PRONUNCIATION tis i lim’ ue mab
THERAPEUTIC CLAIM treatment of cancer
Some Positve Test results of the CTLA-4
Early testing of an experimental human monoclonal antibody showed a striking benefit in patients with advanced melanoma, say researchers at The University of Texas M. D. Anderson Cancer Center, who presented their findings at the annual meeting of the American Society of Clinical Oncology. Of 39 patients given a single injection of CP-675,206 (known as CP-675), tumors disappeared in three patients, shrunk in a fourth patient, and cancer stopped growing in five other patients. These responses have remained since their initial treatment, which ranged from 13 to 28 months ago.
Most of the patients in the trial had advanced melanoma, which has a median survival of less than a year, says the study's principal investigator, Luis Camacho, M.D., MPH, assistant professor in the Department of Melanoma Medical Oncology.
"We were very pleasantly surprised to find such objective antitumor responses in a Phase I clinical trial, which is designed to find the ideal dose and to look for side effects," says Camacho. "These results are very early, but they are encouraging to us because there are no good agents available to treat melanoma once it has spread."
The researchers gradually increased the amount of the initially tested dose by 1,500 fold, evaluating seven different dose levels, before they found higher doses that both produced an effect and had tolerable side effects. Most of the patients who did not respond to the drug were those treated with the lower doses, the investigators say.
The study was conducted at M. D. Anderson Cancer Center and at the University of California, Los Angeles. A collaborating researcher is Jesus Gomez Navarro, M.D., clinical director of the monoclonal antibody program at Pfizer, Inc., which developed the antibody and is sponsoring the clinical trial.
The researchers say the antibody seems to act as a "nonspecific immune booster" which enlists the immune system to fight cancer. It acts by blocking a key negative regulator of the activity of the immune system. This regulator, cytotoxic T lymphocyte-associated antigen 4 (CTLA4), stops activated immune cells from attacking the body's own tissues. The antibody, in turn, stops the function of CTLA4, a receptor that works as "the brakes" of the immune system.
Like a vaccine, CP-675 seems to continue to work long after patients receive the single two- to four-hour injection, Camacho says. "We believe the monoclonal antibody enlists the immune system to fight any new cancer cells trying to grow," he says.
The antibody may work particularly well in melanoma, he adds, because previous research has shown the immune system, if activated, can recognize this cancer.
Because the antibody allowed the immune system to attack cells that "looked" similar to the body's own, researchers worried that it could produce autoimmune disorders such as rheumatoid arthritis. But the only side effects that were observed, including rashes and diarrhea, occurred at the highest doses and were resolved without long-term problems, Camacho says.
Based on the results, Pfizer has launched a Phase II study, which is enrolling 100 patients at seven institutions nationwide. Camacho will serve as the principal investigator for this trial as well.

Additional contact information:
Laura SussmanASCOCell: 832-264-8893
Julie PenneTel: 713-792-0655Cell: 281-460-1788
Contact: Julie Pennejpenne@mdanderson.org
713-792-0662
University of Texas M. D. Anderson Cancer Center

8/31/06 It is that time again. Off to School!!!!!

We took Jessica back to Vermont this passed weekend. The trip went well until we got near Lake George late Sunday on the way back to Rochester. Traffic was backed up for miles. It didn't help that it was raining. It took close to 7 hours to get back to Rochester.
Anyway here is the scoop. On September 5th I will get an EKG and blood work done here in Rochester. On the 6th of September I go for another CT scan and MRI of the brain to make sure everything is status quo. If things go as planned, Dee and I will be going down to Pittsburgh the 12th of September for a physical and once over. The infusion of the next trial will start Wednesday the 13th. It will take 5 hours and then blood is drawn an hour later. It will be a late drive home to Rochester.

I will keep you posted

Jimmy B.

I just want to say thank you to Alex Hu for the bottle of pomegranate juice.

I just want to say thank you to Alex Hu for the bottle of pomegranate juice. It is a real nice treat in the mornings. You mix it with Vodka and orange juice and you get a "Rochester Sunrise".By the time the sun rises, you only see the inside of your eye lids.
Only Kidding!!!!!!
Thanks Jill and Anne for delivering it. It was nice to see you guys. I hope I didn't talk your ears off.

I am still waiting to hear from Heather on the schedule of the next trial. Once I get it, I will pass it on to everyone.

P.S. Paul sorry you missed the trip.

Take Care --- Jimmy B.

8/21/06 It was the night before taking the trip and all through the house. Page 2

So, I will proceed on to the next clinical trial. (CTLA-4) Melissa begins to tell me about the trial. Ticilimumab is a monoclonal antibody manufactured by Pfizer. It is a special manufactured antibody, much like antibodies that are usually made by the human body to fight off infection. It is not known why the human body does not “fight off” a cancerous tumor. The idea behind developing this experimental drug is that stimulating the immune system could be a different way of killing cancer cells.
The Cytotoxic T Lymphocyte Antigen 4 is a protein found on cells in the immune system. CTLA4 seems to slow down the immune response, so blocking it with anti-CTLA4 antibody may make the immune system response more active.
The purpose of this study is to see if ticilimumab stops the growth and spread of my melanoma or shrink the tumor lesions.
Now onto the side effects: Fatigue, skin pigmentation, skin problems, edema, abnormal thyroid function, headache, nausea, vomiting, myalgia (muscle aches), hot flashes, fever,Loss of appetite, chills, dyspnea (shortness of breath), sore throat, swollen glands
I am voting for hot flashes. Only time will tell.Anyway, Dr. Kirkwood comes in and asks, “Do you have any questions?” My mind is now on overload and I reply, “What if CTLA-4 doesn’t work?” Now, do you call this positive thinking? NOooooooooooo! His response, “We have other options that we can explore.” At the time, it seemed a little vague to me. I must have caught him off guard. Hey, I wanted to have a backup plan in place if need be. I want those ducks lined up.
So Dr. Kirkwood leaves the room and Melissa escorts me down the hall to a small room with a round table in it. She says, “Heather will come in with the paperwork for you to sign.” So I am waiting and waiting and waiting. It is now 1:30 pm and I am starving. So what do I do, I pull out my lunch which consists of a roast beef sandwich, chips, a can of pop and a delicious homemade blueberry muffin which is now totally defrosted. So I ate my lunch waiting for Heather. I never skipped a beat. By the time she arrived there was no evidence that I had lunch except for the empty pop can in the garbage. She never knew.
Finally, Heather arrives. She tells me to read over the trial and initial each page. There was also a consent form at the back of each section that I was to sign and date. The trial was 27 pages long, so she stepped out to help another patient with their trial. Heather was being pulled in four different directions. I cannot start the new trial until 4 weeks from the last patrin dose which was August 10th. By the time we went over the logistics of the trial it was approaching 3:00 pm. I had one more thing to do. Cancel my stay at the Shadyside Family House. I refer to it as the Half-way house because I forget the name all the time. (check out the photo)

This is not, I repeat, not the Shadyside Family House, but good for a laugh.

I was on the road by 3:30 pm and arrived back in Rochester at 8:00 pm. My best time ever. Traffic was on my side again.

8/21/06 It was the night before taking the trip and all through the house. Page 1

My daughter had taken the car to her boyfriends’s house. So, before I went to bed, I left the hallway light on. I was anticipating that Jessica would turn off the light before she went to bed. Well, I was wrong. I awoke at 2:15 am to go to the bathroom and the light was still on. So I called her on her cell phone a couple of times, but no one answered. I thought she had fallen asleep at Dave’s house. So I tried a half hour later. To make a long story short, Jessica was in bed but had forgotten to turn off the light. Moral of the story, check the driveway to see if the car is there or check the bedroom to see if Jessica is there. I was worrying over nothing. So as you can read, I didn’t get a good night’s rest before the trip to Pittsburgh.

I got up at 3:50 am. Showered, shaved and made a pot of coffee. Had a bowl of cheerios with blueberries on top .By the time I got out the door, it was 4:50 am. There was hint of autumn in the cool air. Dew was on everything. I knew that I would be running into fog and morning mist along the way. The trip went quite well. Traffic was very light until I got to the city limits of Pittsburgh.

I arrived at about 9:30 am and went directly to the second floor to sign in. The place was packed. It looked like airport terminal on a Monday morning with all of the commuters waiting to reach their destination. There was a line just to sign in, and most of the seats in the waiting room were full. I knew from that moment, that it was going to be a long day. Thinking ahead, I brought my emergency knapsack. It contains, my folders, pens, reading material. But this time I added drinks, chips, a sandwich and a bag of half frozen blueberry muffins to hand out to the staff. I like to give them a treat every once in a while. They tend to look forward to seeing me and I like getting all that attention. Hey!! When it works it works and they don’t bite the hand that feeds them. Oh!, I forgot to tell you that I packed a tape recorder also. Dee always asks questions about what the doctor’s say. Usually I forget things. So now I just have to play back the tape. Boy, it makes my life easier.

So first, they draw my blood and then sent me to concourse D. The Hillman Center reminds me of JFK Airport. With all of it’s little hubs. At concourse D, I pass on my charts to the receptionist that doubles as a nurse practioner. She takes my weight, temperature and vital signs. All seem normal. She then sends me back to waiting room. Within 15 to 30 minutes I get the call. I follow the nurse to the examination room. It is now about 10:30 going on 11:00 am. The first person that stops in is a new physician assistant student, Michele. She first asks me about my medical history. I give her the condensed version. She asks me to take off the gown. You know which one. The one that you are suppose to tie in the back which I could never do. She gives me the once over and checks my tumors.

Next, Melissa walks in and starts telling me what they had found on the scans and the CT report. I quickly stop her and proceed to turn on the recorder. She asks, “Should I start over from the beginning?” I said, “Definitely yes. Dee would kill me if I didn’t get it all on tape.” Here the scoop. The tumors on my back got a little bit larger. My lungs have more spots on them then the scan before. This is an indication that the decarbazine treatment is not working. It may have slowed down the progression, but the tumors continued to grow. The previous spots on my lung have doubled in size.

8/21/06 Going Solo to Pittsburgh!!!!

I am going solo to Pittsburgh!!!!. Dee is taking our son Christopher to see Clarkson University. So I don’t have a copilot this time. This should be interesting. I have no one to tell me to slow down. I am leaving between 5:00 and 5:30 am. I should arrive around 10:30am. I am hoping for the best. I’ll keep you informed.

Confusing Update!!!!

I am getting the CT report second hand from Heather. I was told that one of the nodules in my lungs has doubled in size, while the tumor under my right axilla has shrunk. Can you believe that? So why is my armpit sore and swollen? My guess is lymphoedema maybe setting in.
Lymphoedema is a chronic swelling that occurs when lymph fluid does not fully drain away from the tissues. Excess fluid builds up and causes swelling (oedema), because it is unable to drain away as normal. Lymphoedema may be extremely debilitating and although it cannot be cured, treatments often involving exercise, compression bandaging and massage can arrest the condition. Early detection and therefore early treatment are critical to providing the best patient outcome.
It is just a guess at this point. The CT scan did not show any thing else in the armpit area. So, with the burned CD disk of the CT scan in hand, I will go down to Pittsburgh on Monday August 21st. We will review and compare the PET/CT scan on June 16th to the most recent one, August 17th. The trip may be a one day or a three day event. It all depends on the comparison of the scans.
This reminds me of my little league days. It is the bottom of the sixth inning with two outs. Bases are loaded. The score is 3 to 2 and the tying run is at third base and batter has a full count on him. Does he swing away, or hopes to draw a walk to bring in a run to tie the game? Only the manager and the batter know!!!!!

The suspense is killing me!!!! I will find out Monday at 11:00 am.

Stay tuned !!!!

8/17/06 CT Scan

I arrived about 15 minutes early to my appointment. The receptionist had me fill out an update form. Meanwhile, the nurse came out to the waiting room with two bottles of barium sulfate solution ( 1.2 %wt/wt.). It was 450 milliliters each and a plastic cup. Starting at 1:55 pm, every 10 minutes, I was to drink a cup of this solution. This went until 2:45 pm. (Six times.) Then, I was taken back to a room to have an IV put into my arm. I hate IVs. The first vein that she tried to enter did not work out. So I guided her to my favorite entry vein. This is the one that I donate all my blood from. It worked!!!!!!
So now we have an entry point for the contrast agent. The nurse leads me into the instrument room. Like before, I jump onto the table and assume the position. They strap me in so I won’t move during the scan. Now the table starts to move me into the tube. Once I am in and ready, a voice comes over a speaker and says, “Breathe in and hold your breath.” So I follow the order. The table starts to move out of the tube. Once the table has stopped, the voice says, “Breathe.” This is done so they have a baseline to work from.
The technician comes in and hooks me up to the contrast solution that is hanging on a pole beside the table. We repeat the procedure, but this time with the contrasting agent.
As the agent enters my body, I get a warm feeling all over--almost like I wet myself. It is the strangest feeling. It only lasts for about 20 seconds. Once done, they unstrap me and lead me to a recliner where they remove the IV. They gave me a glass of juice and sent me on my way--except I would not leave.
I stopped to talk with Ed. Ed runs the facility. Because I was one of the first patients to use the facility, we got to know each other pretty well. I was hoping that he could take a look at my data. Looks like I’ll have to wait until Monday.

8/17/06 Going for a CT Scan Today

I am going for a CT scan today. The appointment is at 2:00 pm at Science Park. I am Hoping for the best. My armpit looks like I have a golf ball attach. Only time will tell. I should get the results some time on Friday and will have a cd burned to bring down to Pittsburgh on Monday the 21st.
I’ll keep you in formed as the reports come in.

Take care Jimmy B.

8/14/06 Gave away more blood today.

I had blood drawn this morning. I also found a surprise on my patio table. It was a bottle of pomegranate juice. Thanks Jill and Mark Fornalik. It is most kind of you.

Chemotherapy 101 Current Treatment

"Chemotherapy and immunotherapy remain the primary treatments for metastatic melanoma. Currently, DTIC (Dicarbazine) is the only FDA-approved chemotherapeutic treatment. Response rates are often under 20 percent, with less than 5 percent of patients achieving a complete response. In addition, DTIC must undergo hepatic activation by the active metabolite monomethyl triazenoimidazole carboxamide (MTIC), and cannot cross the blood-brain barrier, so it is ineffective for patients with hepatic dysfunction or CNS metastases."Not a good choice for brain tumors.
I guess I did not make the grade.

On to the next trial Please!

8/11/2006 Response from Pittsburgh

Ok, so we would rather you still come in for your scheduled appointment and get your scans. This is for two reasons. First is that you will need to have scans prior to starting treatment. You have disease elsewhere and so removing that one lesion won't get you disease free...so then the next step once you have washed out from decarbazine (4 weeks from last dose) you can get going on the CTLA-4. The second reason is that there has to be an off study exam and also an "on study" exam for the next step.I think that your disease is too active right now to just do surgery and radiation to be honest. Things are changing quickly and I think that we are best served to hit you hard as possible, make sense?? The other thing is that we don't know what else is going on elsewhere in your body (god willing, there will be nothing else)I would assume that Dr. Kirkwood would talk to Dr. Peacock, but I would not recommend the surgery/radiation without going through with the scans and talking to us first, ok?Hope this helps, let me know if there is anything else you need.

Melissa

8/10/2006 More growth in the right axilla.

After being seen by Dr. Peacock, he concluded that there is more growth in the right axilla (arm pit). It can be surgically removed and then treated with radiation or hold off and change to another chemo treatment (CTLA-4). With removal and radiation, there is a 30 % chance the I will come down with lymphoedema .
Lymphoedema is a chronic swelling that occurs when lymph fluid does not fully drain away from the tissues. Excess fluid builds up and causes swelling (oedema), because it is unable to drain away as normal. Lymphoedema may be extremely debilitating and although it cannot be cured, treatments often involving exercise, compression bandaging and massage can arrest the condition. Early detection and therefore early treatment are critical to providing the best patient outcome.
Decisions … Decisions
Right now, I can deal with the intermittence pain and a small lose of circulation to my right arm.
No pain, no gain.
I hope Dr. Kirkwood has something up his sleeve.

Got an appointment with Dr.Peacock (Surgical Oncologist)at 4:00 pm

It pays to be persistent. Never take NO as the final answer.You need to be a little pushy sometimes.
The last time I had swelling and aches in the arm pit was when the cancer reached the lymph nodes. It could be that the nodes that are left are now also contaminated. Time will tell.

I will keep you informed.

Dr. Pandya's Response

Melissa, I called my oncologist and he is not seeing patients today or Friday. He said his clinical days are Monday, Tuesday, and Wednesday. They told me to see the surgical oncologist who did the surgery. That was Dr. Peacock. He doesn’t have an opening until next Wednesday. I pleaded to try to squeeze me in today if at all possible. I am waiting for a phone call back from Joslyn , the physician assistant.

As you can see, I can't get good care in Rochester.

This stinks to high heaven

Melissa's response.

So the answer to this is simple, if you can't come down here before August 21st, you should see your local oncologist. They can call us (or you can) with his assessment and if he feels that you should be here prior to the 21st, then you come. Does that sound reasonalbe? Without actually laying hands on you it's not certain what the cause of this swelling is. The pain can simply be postoperative healing/nerve regeneration type pain, but the "bulge" would need to be evaulated to know for sure.Hope that helps you, if you need anything, or decide you are making a trip down, give us a call.

~Melissa

Waiting for a reply. I sent a note this morning to Pittsburgh.

Heather/Melissa,

About a day ago my under arm where my lymph nodes were removed started aching. I know there is a tumor there. Yesterday my armpit swelled up and I can feel a bulge under the tumor site. I am not sure if it is another tumor or if it’s a lymph node. My question to you is, should I hold out until our next visit on the August 21st, or should I seek help up here in Rochester?

8/07/06 Off to donate some blood!!!!

I am off to give some blood away. They will be able to tell if my white blood count is still normal or not. I am hoping for the best.

8/6/2006 Fatigue from the second dose of Chemo is setting in.

In the past two days I am finding myself more tired after every waking moment. It must be the second dose of Chemo. Yesterday, I slept from 12:00 pm to 4:00 pm. I got up just in time to eat dinner before my 4 hour fasting started. Today, Sunday, I slept until 12:00 noon. This is not my style. I am a morning person. I will try to increase my juicing to get this side effect under control. I hope it works.

8/04/06 Not to Be Out Done!!!!!!!!!!! A New York City Harbor Patrol Policeman Saves Woman from Drowning in the Great South Bay off of Long Island

As you all may not be aware of it, my youngest brother, Steve is a New York City Policeman. He is in the Harbor Patrol that protects our waterways into the Big Apple. On his off days, he runs a towing service on the water for broken down boats and or boats that run aground.
Well not to be out done, he was in an accident this past Tuesday. He was out on the water around 9:30 pm just after sunset. A 20 foot craft with no lights on came barreling down on him. He never saw it coming. The bow of the other boat, road up, over his boat just missing him. It sheared off the aft section of his tow boat. The two people in the other boat (a man and a woman) were both intoxicated. The woman was thrown into the water. They had no life preservers on and they both were unable to swim.
My quick thinking brother radioed in a May Day instead of a 911 distress call. When you call 911 you get an operator that starts asking all kinds of questions, chewing up valuable time. “May Day” everyone comes running. (the Coast Guard, the police and other boaters in the area)
Anyway, the intoxicated man started to take his shirt off to jump in the water. The women pleaded not to. She knew he could not swim. Steve dove in to save the woman’s life. When all was said and done, it did not make the papers down there. So with the power of my pen and the internet, it has made it to print. To all the Unsung Heroes out there, we salute you.

Steve, you are my hero.

Jimmy B.

The second round of Chemo

My body is handling the second round of Chemo quite well. No nausea this time, only a little fatigue. Hey!! We all get tired, especially trying to keep up with Bob B. He’s the man!!!!!!!!! My spirits are high and I can’t wait until we have the CAT scans results. I am crossing my fingers.I want to thank everybody for all your support. Your friendship means a great deal to me.

Take care and I will keep you posted.

Jimmy B

7/31/2006 Monday Road Trip!!!! with Bob Bouvy as the pilot at the controls.

Bob pulls into the driveway exactly at 5:30 am Monday July 31 2006. Talk about being on time. It must be his analytical research background showing through. We gassed up at the Hess station on East Ridge Road and headed toward 490 West to Buffalo. Traffic was light all the way to Buffalo. We made good time and beat the morning traffic. The weather was hot and muggy. We were traveling in style, Bob’s 2003 pickup (with air). It is a standard 5 speed. Bob asked “can you drive a standard”. I said “Sure, I can drive anything, I got my license out of a Cracker Jacks Box”. It must have been real assuring to Bob that if I drive, I could drop the engine at anytime. I have not driven a standard in about 20 years-- it was my wife who taught me and I didn’t earn any certificates. We are in BIG Trouble.
About 20 miles outside of Buffalo we switch positions and I took the driver’s side. I said to Bob, “This should be easy. It’s like driving a bicycle. You never forget”. Well, I start out in first, then I shift to second using the clutch as we pulled onto the thruway (I 90). When it was time to shift into fourth, things began to happen. I could not find fourth. I guess in the parking lot, doing a once over with the gear shift was not enough practice. The engine started screaming!!!!! An eighteen wheeler was coming up fast and I was only doing about 40 mph. The truck quickly moved into the fast lane and passed us as if we were standing still. Bob at this point was taking everything in stride. I manage to get it into fifth gear and slowly creep up to 70 mph. Bob said to me “I know you like to take shorts cuts. I guess you are not used to driving a 5 speed.” I was so embarrassed my face turned a bright red. Hey! I never said I was good at it. He only asked if I had driven a standard before. I didn’t lie. Well within the first hour of driving, I got used to it.About 2/3 to Pittsburgh we stopped and switch again. I became the copilot again. I was counting my lucky stars that Bob took control into Pittsburgh with all those hills and red lights. I was starting to have an anxiety attack just by thinking about how stop/start on an incline, using your clutch, brake, and gas pedal all at once. My hands are sweating as I type this.
Anyway, we made it to the Hillman in good time (10:30 am). We signed in and stopped in the research and resource center. I introduced Bob to Joyce and then proceeded to outpatient center. We signed in again and waited for the nurses to draw blood and get my vital signs including my weight. Everything was fine. I was then sent back to the waiting room where we met by Heather. We talked about what was going to take place over the next two days, and that she would show us where we would receive the chemo on Wednesday. But first Pam would need to do a once over. Listen to my lungs and heart and pulse. Pam also felt my tumors and asked “if they seemed to be the same size or are they growing?” I told her that my wife thinks that they seem to be the same size. It seemed to be encouraging. We will know something after the CAT scan on July, 17, 2006. That is when I get scanned again.

When we got finished with day one of the Hillman visit, we were lucky to get into the Shadyside House on Centre Ave. We made reservations weeks in advance, but they don’t know if they have any openings until the day of arrival. This is because, when you get accepted into the house, you can have unlimited stay as long as you need it. Some patients stay for months beings stabilized for organ transplants. This house is run by volunteers and the price is very reasonably. They gave us a tour of the house. The office, the parlor and the kitchen were all on the ground level.The kitchen was enormous with two of everything, industrial stoves, refrigerators, dishwashers, and coffee pots. I was in heaven. We were given a basket for dry food and labels to label our food that we purchase for our stay. Our number was 102, which corresponded to our suite. The suite consisted of a bathroom, a single bedroom, and a living room with a pullout couch. Bob insisted that I take the bedroom.
It was now going on 2:00 pm and we were dying for lunch. So I pulled out my Mapquest directions on how to get to this restaurant that my sister Kathy suggested. The name of restaurant was Primanti Brothers located in the “Strip District Market Place” Only 3.11 miles from the Hillman Cancer Center. They are noted for the largest sandwich in the City of Pittsburgh. To get there, we have followed the oneway streets. So, as we turned onto Penn Ave, we saw a lot of rundown industrial buildings and shops. All if a sudden, something caught my eye. I took a second glance. There, on the side walk, a man with a black bikini top on and shorts working as a street vendor. I quickly point it out to Bob. It was quite the sight. He looked like a short Italian with dark hair and olive complexion and this skimpy black bikini top with makeup and all. We both burst out into laughter. It was a good thing the windows of the truck were closed. I almost wetted my pants. Well, with all this distraction, we missed our turn and had to loop around again. I had trouble getting the image out of my mind for hours. We finally found our way to Primanti Brothers and walked in.We sat down at the counter, and began to read all the choices on their menu on the wall. There were too many choices and the counter person started to get irritated because we were taking so long to make our decision. So, to break the tension, I told him we drove all the way from New York to try the best and biggest sandwich in town. He was not amused. I think it was the heat and humidity of the day was getting to him.

Anyway, we finally decided, Bob was going to have the famous fish sandwich and I was going to try the cheese steak. The # 2 best seller. Well we had a bird’s eye view while he was making the sandwiches. Now the fish was huge, but then he served it with french fries, coleslaw and tomato (on the sandwich!!!!!!) I know it sounds strange it is downright different. The sandwich was about 5 to 6 inches tall with fries sticking out that looked like a pile of railroad ties. The slaw was oozing out.

It took great concentration and two hands just to pickup a half of the sandwich. It reminded Bob and I of a Nick Tahoe garbage plate. It surely filled us up to the point that we ended up skipping dinner.We tried to walk it off, by going into shops and taking in the sights. It was too hot to do any real exploring so we headed back to the Family House to settle in until it cooled down.Around 8:00 pm we took a walk to local grocery store to get some fruit and apple pie to supplement our stay at the house.We began to crash, so we called it a night around 9:30 pm.

With the help of the staff at Shady House we planned Day 2 as explore Pittsburgh day.

The only thing I had to do is take my patrin on time and fast 2 hours before and two hours after taking the drug. I can do that with my trusty phone alarms.
So, I got up at 5:15 am and went down to the kitchen to make some breakfast and have coffee before my cut off time (6:00am). I had a little fruit and some famous homemade banana bread that I brought from home. I tuned on CNBC Financial News and had a leisurely breakfast. Bob came down about 6:30 am and we hung out until we were ready to start our little adventure.
First on the agenda was how to get to Station Square. It is located on the other side of the river. There are shops, the incline up to the top of Mt. Washington and or the Gateway Clipper Fleet (sight seeing on the 3 rivers of the city’s water front). So, we wanted to catch Mass transit (a Bus) to downtown to the T station. Only one problem, which bus and which station? So, we walk a half a block to the first bus stop we saw on Centre Ave. As a bus pull up, we ask the driver if the bus goes downtown to a T station? He asks us “Where would you like to go?” We say “Station Square”. He says, “This is the wrong bus, you need Bus 71A Negley to Downtown.” So we get off and wait for the 71A to arrive. It shows up in less than five minutes. We are now at the beginning of our great adventure. As we get on the right bus we ask the driver to let us know where to get off to catch the T to Station Square. He said “Sure”. We stick close to front of the bus so we can hear the driver yell out our stop. It was a local, so we made many stops along the way and arrived at the T station. I think it was called the Mellon Arena Station or Grant Ave Station. Who knows!!! All we know is that it goes to Station Square.It was early, you know Bob, he loves to walk. So we decide to take a detour downtown and walk around. It is about 9:30 am. Bob is not used to seeing skyscrapers up close and walking downtown. So, it was a new experience for him. Not too much green open space in the city. We ended up walking right into the Business District with all the banks and major corporations like Seagate Technologies, Ariba and many more. We also found some very old churches dating back to the early 1700’s. We walk until it started to get warm, so we headed back to the T station. It was about 10:15 am. When we got to the station, we proceeded to find our departure platform, we think. There was only one other person on the platform, a Asian person sitting on a bench about 20 feet away. So I approached him and asked, “Is this was the right way to Station Square.” He looked up at me as though I had three heads and mumbled something. I looked at Bob and we just walked away to give him some space. I guess we will have to wing it. So the train pulls into the station and we literally run to the first car which has the conductor in it. As we get on the train, I ask the conductor if this train goes to Station Square. He replies “Yes, the first stop after we pass over the river.” We had made it to our first of many destinations of the day without a scratch. So far so good as our adventurous day unfolds.We jump off at the first stop and walk down the river front with shops and restaurants. We stop to talk to an art student taking photographs of a spraying fountain keeping beat with the music that was piped in loud speakers along the walk. Her assignment was to try different shutter speeds and see what effects they have on the moving object. We told her that we work and had worked for Kodak and asked it she was using Kodak film. The answer was YES!!! exclusively. 400 speed black & white.We proceeded to move on were the Gateway Clipper Fleet were docked. It is the only way to see the city. We approached the booth to check out the ferry schedule. The next sightseeing trip was scheduled for 11:15 am on the Keystone Belle. (Capacity: 400) It is the newest addition to the Gateway Clipper fleet entering service on the three rivers in 1999. The Keystone Belle is a 120 ft. long, 35 feet wide all-steel paddlewheel style riverboat. Plus it is air conditioned on two decks. Yeh!!!!!!!!!!!!!!!!!!!!!!!!!!!!We start boarding about 10:50 am. There is a photographer that tries to take you picture in front of a mock wheel house. Bob and I desperately try to avoid having our picture taken. We tell the young lady that we are escaped convicts and don’t want to be on “America’s Most Wanted”. Well, it doesn’t work, she takes the picture anyway. Bob is looking down and I pull my hat over my face. It was a great piece of work. We board the vessel and go directly to the top air condition deck. We find a place to sit and cool off from the heat. It is now about 90 degrees out with very little breeze.The tour takes about an hour and it lets us escape from the heat. We see quite a few bridges and buildings. I could name them to you but you might fall asleep. We are now approaching lunchtime and are thirsty from all that walking. We stop at the Pittsburgh’s Hardrock Café for a cool one (Ice tea, and not a Long Island Ice Tea) before proceeding to the Monongahela incline. Basically, it is a gondola that takes you to the top of Mount Washington. The view is spectacular. Our quest at the top is to find the Monterey Bay Grotto where we will have lunch. It has one of the best views of all the restaurants on top of Mount Washington, overlooking all three rivers, both stadiums and Pittsburgh’s Golden Triangle. It is suppose to have the freshest fish in Pittsburgh.

At the top, we pay for the incline ride and ask the toll taker for directions to the restaurant. He said, “Just follow Grandview Blvd for a mile, pass the Duquesne Incline and it is located on the sixth floor of the high-rise on your Left”. The directions sounded easy. Just follow the yellow brick road. He forgot to tell us it was all uphill. We also need directions on how to get down and back into downtown using public transportation. The cost of our transportation back to the city, a mere $2.25 with a transfer. What a deal!!!!

Once we got our tickets, we started the one-way hike to our lunch destination. There were quite a number of observation posts along the way. By the time we reached Monterey Bay, I was drenched with sweat. I looked to the hostess, like I had just gotten out of the shower. Bob fared much better. He is in better condition than me. We were escorted to a window seat and the view was the best I have ever seen. The first thing I did was to dry off with an extra linen napkin. I was drenched. Bob ordered a nice cool one (beer) and I stuck with the ice tea. It was unlimited so I must have drunk at least a gallon by the time the meal was finished. The fish selection was quite extensive. It was recommended that the seared tuna was fresh. So Bob order the seared tuna with a black peppercorn sauce and glaze carrots. I on the other hand had my sight set on Maryland crab cake with a side of coleslaw. It was one of the best seafood meals that I ever had outside the coastal restaurants. By the time we finished lunch it was going on 3:30 pm. So we headed back to the Duquesne Incline and took it down to street level. The toll taker came out of his booth to show us how to catch the bus back into town. We had two options, the first option was to look through a glass, through a box, at a mirror on a post aimed down the street. When you see the bus in the mirror you push a button on the wall and it signals the driver that there is a pickup. The second option was to stand outside and show some leg and push the button on the post, and if you are lucky, they will stop. We opted for the second option. We tried it and the first bus that came stopped. We asked a woman that was waiting also for the bus if they always stop, or did we get lucky. She said, “We got lucky.”

So now we are on the bus but we did not know were to get off. The kind women that help us show some leg told us to get off at the Hilton downtown. So now we get off the bus and like typical tourists we pull out our trusty maps to get our bearings. Well that did help. So we approached a transit cop and he pointed us to the T station at Wood Street.We entered the station and there were racks of maps for all the different routes the mass transit has. We were looking for Shadyside or Hillman Cancer Center. We wanted to figure out our route before it got dark. So, we walk a round a ten block radius looking for our bus stop. Each bus stop has a list posted on them which bus route numbers are picked up there. So just match the bus stop with the route number. It wasn’t so easy. We walked to quite a few bus stops until we found the right one. Now we had to memorize the location and it relationship to the Roberto Clemente Bridge. This is the bridge they close during baseball games so spectators can walk across to get to the game. Yes, We also caught a ball game too. What a day!!!!!!!!!!!!!!!! We did make a stop at the local Starbucks to cool off and get a pomegranate smoothie. We had time to kill. The game did not start until 7:05 pm. The gates open at 5:30 pm so fans can watch batting practice and get autographs of the players. We just wanted to get in our seat and rest. We thought about getting drinks but the prices were outrageous. (3 bucks for a bottle of water and 6 bucks for a beer) And it was in a plastic cup. The lady in front of us kept us cool by spraying herself, which in turn sprayed us with a fine misting fan. It was a good game but the Pirates lost to Atlanta by the score of 4 to 2. As we headed back over the river, back to downtown after the game, the water price had drop from 3 bucks to a dollar. What a scam!!!!!

As we reached our bus stop, the bus (81B) appeared within minutes. We got on and got back to Shady House by 11:00 pm. By now we were hungry. We did not eat at the park because I was in fasting mode between 6:00 pm and 10:00 pm. So we took a detour to Ritter’s Dinner open 24/7. This is where all the locals hang out. The food is good and the price is right. Bob was being good, so I suggested the Greek salad. Dee had tried it there once before and said it was delicious. I on the other hand, I wanted a BLT with home fries. I miss my starches at home. They raise my blood sugar so I only eat them on special occasions or when my wife is not looking. You guessed it, I am BADDDDDD!!!!!
We were in bed by midnight.