Thursday, August 31, 2006

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.

Wednesday, August 23, 2006

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.

Tuesday, August 22, 2006

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.

Sunday, August 20, 2006

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.

Friday, August 18, 2006

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 !!!!

Thursday, August 17, 2006

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.

Monday, August 14, 2006

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.

Friday, August 11, 2006

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 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.


Thursday, August 10, 2006

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.


Monday, August 7, 2006

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


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.

Sunday, August 6, 2006

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.

Friday, August 4, 2006

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

Thursday, August 3, 2006

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.

Greetings to One and All

This Blog is dedicated My Brother Kenny B. who passed away in the late 1970's with Cancer before the Internet.

It was he, who showed me How to live and give back. He was wise beyond his years.

Kenny B

Jimmy and Dee

Carepage: Jimmybreitfeller
Jimmy Breitfeller

My Profile as of 2009

My photo
Last July (2005)I was riding my bicycle to work at the Eastman Kodak Research Labs about 3 miles from home. I was wearing a knapsack to carry my things to and from the labs. I started noticing an ache on my back. So I decide to go to the dermatologist. To make the long story short, it was cancer. I knew from my research that I would be needing adjuvant therapy. So I started communicating with Sloan Kettering, University of Pittsburgh Cancer Center, and a couple of others including the Wilmot Cancer Center at Strong. I realized that by telling my story, I might help someone else out there in a similar situation. So to all who are linked by diagnosis or by relation to someone with melanoma, I wish you well. Stay positive, read as much as you can (information helps to eliminate the fear associated with the unknown), and live for today, as no one can predict what tomorrow may bring. Jimmy B. posted 12/15/08


The information contained within this Blog is not meant to replace the examination or advice of your Oncologist or Medical Team. The educational material that is covered here or Linked to, does not cover every detail of each disorder discussed.

Only your physician/Oncologist can make medical decisions and treatment plans that are appropriate for you. But, An Educated Consumer is a Smart consumer.

As Dr. Casey Culberson Said:

"The BEST melanoma patient is an ACTIVE PARTICIPANT in his or her treatment

Melanoma and the “Magic Bullet” (Monoclonal Antibodies)

Just to let you know I posted the first draft of the Melanoma and the “Magic Bullet” (Monoclonal Antibodies). on Melanoma Missionary In the Shared File Section. you can download it for 19.95 (Only kidding) it is Free for the taking.

It is 33 pages long and may help you in your quest for the Yellow Brick Broad. Just to let you know it is only the first draft. Revisions are sure to come. I wanted to get it to the people that need it the most, the Melanoma Patients.


So, where does Interluekin-2 (IL-2) come into play? According to Byung-Scok et al and recent reports, IL-2 is not needed for developmental CD4+ CD25+ Treg cells in the thymus but does play an important role in the maintenance and function in the peripheral.18 Peripheral is defines as secondary system outside the bone marrow and thymus. It entails the site of antigen, immune system interaction. IL-2 is required for the peripheral generation of Tregs based Abbas’s and colleagues research.19

IL-2 prevents the spontaneous apoptosis of the CD4+ CD25+ Treg cells. It has been reported that patients with multiple advance-stage tumors have elevated levels of Tregs within the tumor microenviroment.20 Interluekin-2 is the survival factor for CD4+ CD25+ Treg cells.21 If the addition of IL-2 is on or before the maximum propagation of the CD4+ T cells, the Tregs population can increase 5-fold in a 96 hour period based on certain growth mediums.

By controlling the addition of the endogenous IL-2, one has a knob to turn and can lead to the control of the expansion of the Tregs. When you combined this control with the anti-CTLA-4 blockage, you can shift the balance of the immune response.

Now here is the catch. The maintenance and function of the CD8+ T-cells require CD4+ cells which secrete IL-2. So we don’t want to deplete the CD4+ cells, we want to control the expansion of the Tregs which are a subset of the CD4+ cells. It has been postulated by some researchers that the Anti-CTLA-4 blockage also suppresses the Treg function in a different mechanism. By using IL-2 as the rate limiting factor, we can suppress the CD4+ CD25+ Treg cell expansion by controlling the concentration and timing of the Inerluekin-2 at the tumor microenvironment.

The Interluekin-2 plays another role in this Melanoma Maze. In a study by Janas et al, Il-2 increases the expressions of the perforin and granzyme A, B and C genes in the CD8+ T-cells. This increase expression causes the CD8+ T-cells to mature into Cytoxic T Lymphocytes (CTLs). The exogenous IL-2 is required for the granzyme proteins. As stated previously, CTLs have cytoplasmic granules that contain the proteins perforin and granzymes. A dozen or more perforin molecules insert themselves into the plasma membrane of target cells forming a pore that enables granzymes to enter the cell. Once in the tumor cell, these enzymes are able to breakup (lyse) the cell and destroy it. This is the beginning of the end for the cancer cells. The tumors begin to shrink and the rest is history,

On the other hand, prolong therapy with Il-2 can result in causing apoptotic death of the tumor- specific CD8+ T-cells.23

Clearly in a clinical setting, timing, dose, and exposure to these drugs play a major roll in the immunotherapy, and can have dramatic effects on the outcome.

All it takes is that one magic bullet to start the immune reaction..

Melanoma And The Magic Bullet (Monoclonal Antibodies)

Public Service Announcement

A call for Melanoma Patients by Dr. Steven A Rosenberg

"We continue to see a high rate of clinical responses in our cell transfer immunotherapy treatments for patients with metastatic melanoma", Dr. Rosenberg said.

"We are actively seeking patients for these trials and any note of that on a patient-directed web site would be appreciated."

If you would like to apply for his trials, here is the website and information.

Dr. Rosenberg's information

Dr. Rosenberg's Clinical Trials

For the Warriors

The Melanoma Research Alliance has partnered with Bruce Springsteen, the E Street Band, and the Federici family to alleviate suffering and death from melanoma. Please view Bruce Springsteen’s public service announcement inspired by Danny Federici. Danny was the E Street Band’s organist and keyboard player. He died on April 17, 2008 at Memorial Sloan-Kettering Cancer Center in New York City after a three year battle with melanoma.

Source Fastcures blog

Join the Relay for Life!!!


Dear Family and Friends,

I’ve decided to take a stand and fight back against cancer by participating in the American Cancer Society Relay For Life® event right here in my community! Please support me in this important cause by making a secure, tax-deductible donation online using the link below.

To donate on line now, click here to visit my personal page.
Jimmy B AKA Melanoma_Missionary

Relay For Life® is a life-changing event that brings together more than 3.5 million people worldwide to:

CELEBRATE the lives of those who have battled cancer. The strength of survivors inspires others to continue to fight.

REMEMBER loved ones lost to the disease. At Relay, people who have walked alongside people battling cancer can grieve and find healing.

FIGHT BACK. We Relay because we have been touched by cancer and desperately want to put an end to the disease.

Whatever you can give will help - it all adds up! I greatly appreciate your support and will keep you posted on my progress.

Keep the Fire Burning!!!



Jimmy Breitfeller
Turn off Music before you "Click to Play"
Signs of Melanoma Carcinoma Skin Cancer

How Skin Cancer Develops by " : Dermatology"

Call for Patients with Unresectable Liver Metastases Due to Melanoma

Delcath Systems Granted Orphan-Drug Designations for Cutaneous and Ocular Melanoma

Delcath is actively enrolling patients in a Phase III clinical trial testing its proprietary drug delivery system, known as Percutaneous Hepatic Perfusion (“PHP”), with melphalan for the treatment of ocular and cutaneous melanoma metastatic to the liver.

This NCI-led trial is enrolling patients at leading cancer centers throughout the United States. Commenting on these orphan-drug designations, Richard L. Taney, President and CEO of Delcath, stated, “These favorable designations are important steps in our efforts to secure Delcath’s commercial position upon conclusion of our pivotal Phase III trial for metastatic melanoma. We remain steadfast in our commitment to become the leader in the regional treatment of liver cancers and we continue to enroll patients in this study, and advance our technology and the promise that it offers to patients with these deadly forms of melanoma and other cancers of the liver, all with limited treatment options.”

Orphan drug designation, when granted by the FDA’s Office of Orphan Products Development, allows for up to seven years of market exclusivity upon FDA approval, as well as clinical study incentives, study design assistance, waivers of certain FDA user fees, and potential tax credits.

Current Trial Centers

Phase I Study of Hepatic Arterial Melphalan Infusion and Hepatic Venous Hemofiltration Using
Percutaneously Placed Catheters in Patients With Unresectable Hepatic Malignancies

James F. Pingpank, Jr., MD, FACS
Associate Professor of Surgery
Division of Surgical Oncology
Suite 406, UPMC Cancer Pavillion
5150 Centre Avenue
Pittsburgh, PA 15232
412-692-2852 (Office)
412-692-2520 (Fax)

Blog Archive

Call For Melanoma Patients!!!!

Call For Melanoma Patients!!!!

Dr. Rosenberg Has a New Clinical Trial.

Our latest treatment has a 72% objective response rate with 36% complete responses.

We are currently recruiting patients for our latest trial.

Is there some way to post this “Call for Patients” on the web site?

Steve Rosenberg

Dr. Rosenberg's Clinical Trials

(For a copy of the research paper.. see My Shared files)

The news headlines shown above for Melanoma / Skin Cancer are provided courtesy of Medical News Today.