Friday, June 11, 2010

Pittsburgh Trip (06/28/06) in detail:How my Melanoma Journey Began..Jim Breitfeller

Pittsburgh Trip (06/28/06) in detail:

We left Rochester 4:00 am and arrived in Pittsburgh about 9:00 am. It’s a 5 hour trip if there are no detours along the way and you have a lead foot. I was very anxious to find out what my four options were so we had a cup of coffee and a croissant at their café and then proceeded to the doctor’s office. It was now about 9:30 am and my appointment was for 10:00 am. You know me, I like to be early. My wife says I am always too early. We proceeded to check in, and they gave me the normal treatment. They took my height, weight and vital signs. But this time they make a big deal about my weight. I had loss 4 lbs. So she calls over another nurse to retake my weight again (SOP) standard operating procedure. It was still short 4 lbs. I am thinking great, I am finally getting my weight under control. So, I turned to the nurses and said, “If you gave out cookies, you would not have these problems.” From their point of view, if you lose weight the cancer is active. Meanwhile, I’m thinking to myself, “Of course I lost weight. I’ve been so nervous. . . And, I just drove 291 miles without my breakfast. And we did make a couple of stops along the way.

Anyway, within 15 minutes we were called into the exam room. I am thinking this is great. The temperature in the room must have been 55 degrees. I was told to strip down to my underwear and put on one of those gowns with the slit up the back. I’m thinking, if this is anything like the last visit, I will freeze to death before anyone sees me. So, I told my wife, “If within 30 minutes, no one shows up, I’m going to put my clothes back on.” She said to me, that she was so cold that she had to go to the bathroom. So here we are, I’m shivering and my wife is crossing her legs to hold it in. So we are sitting and waiting, sitting and freezing for about 20 minutes. I did put my shoes back on to keep my feet warm.

Finally, the physician assistant steps into the room and greets us with a big “Hello!!!! ” She proceeds to tell us a little bit about the options, but then stops abruptly. She said: “the doctor should fill you in with all the details.” She then takes a look at my back, and with her hand, finds the lumps and starts counting them. She said “Good they are all there.” I am thinking, where the hell would they go, maybe on vacation? Nahhhhhhhhhhhh!
Anyway, no new lumps to report. She leaves the room to get the doctor and my wife follows her to find the bathroom. Dee returns relieved, just in time here hear a knock at the door.

In walks Dr. Kirkwood who greets us with a big smile and a hand shake. He asks us if Melissa, the physician assistant, has filled us in with the option details and could we go over the details with him to make sure we understood them. My wife and I turned to each other and our faces must have looked white to him. We tried to regurgitate what little information she had shared, although, it was VERY brief and we had not taken any notes. Melissa had told us that the doctor was going to go over the details. Well, my quick thinking wife said that Melissa gave us a very, very brief overview and that at our last meeting with him, we got all of 5 minutes of his time. I guess Dr. Kirkwood did not realize that the last time he had talked to us was before he had the PET/CT scans results and the options were different.
Anyway, he began to draw us a flowchart of the options on the exam table paper. He was really getting into it.

He started with the options at the top, and continued with the first line, second line and third line of defense therapy. It looked like an ISO document. I could draw it for you, but you’d probably fall asleep reading it. The worse part is, you have to have the therapies done in a certain sequence or you can not move to the next line of defense. Another problem, you can not mix and or match. To make things even worse, one of the better lines of defense had to be removed because I have the wrong blood type for the vaccine therapies. I was hoping to use this as my third line of defense.

My wife and I just sat there staring at the flowchart for what seemed like hours. We both started to run different scenarios in our head. We came up with the same conclusion. We needed a therapy that would allow us to “work outside the box” and not “cuff my hands”. We wanted to have the Ticilimumab/ Tremelimumab (from Pfizer …anti-CTLA-4 therapy as my second line of defense. CTLA-4 seems to slow down the immune response, so blocking it with an anti-CTLA-4 antibody may make the immune response more active.

Soooooooooooo! I signed my life away for the phase I study of Patrin in combination with dacarbazine under our protocol 03-091, which is currently not a nationally available trial.

I also signed up to allow Tumor Biopsies. Hey why not. It is FREEEEEEEE!!!! And I get two tumors removed for the price of one. And they say nothing is free in the world anymore. They will remove one and study it before treatment, and then take another one out and see what effect the chemo had on it during the first cycle of therapy. You know me I am always looking for a bargain--and, I am always doing some sort of research.

That is it from my end to yours. That sounds gross. Anyway take care, and keep those messages coming.

If you want to follow my journey you can read it here or at with comments.

We needed a therapy that would allow us to “work outside the box” and not “cuff my hands”. We wanted to have the Ticilimumab/Tremelimumab (from Pfizer …anti-CTLA-4 therapy) as my second line of defense. CTLA-4 seems to slow down the immune response, so blocking it with an anti-CTLA-4 antibody may make the immune response more active.

That was then, This is Now, NED!!!

"Think Outside the Box

“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”
~Charles Darwin~

Take Care,
Jimmy B

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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.