Wednesday, May 6, 2009

Kurt's Story "The Battle with the Beast"

"I will try my best to impart Kurt's story to you.

Kurt was a healthy, 28 year old man living in Bloomington, MN. He was a night manager for the IHOP Restaurant located near the Mall Of America. He was one of nine children and grew up on a farm in southeastern MN. Even as a child he would much rather be in the house cleaning or cooking than doing the outside work. He was very modest and you didn't very often catch him without a shirt or only on a real hot day would he be found in a pair of shorts. He enjoyed playing softball and was on a couple of teams through the summer.

March 2008, Kurt's 92 year old grandmother was extremely ill in the hospital and in his haste to come to see her he slipped and fell in the shower which was in a tub. He hit on the edge of the tub with the left side armpit area. A month later he said it was still sore and he had a slight lump there. Kurt was a 6' 3", 210 lb. man. It was a hard fall and we assumed it was deeply bruised. The first week of May he went to a general doctor and she felt everything was fine on her examination. She thought that a lymph node may have been filled with fluid and to prevent an infection she wanted him to see a surgeon because they could possibly drain it. He saw the surgeon about 10 days later. They agreed with the first doctor. As they were checking things he noticed a mole on the right side of Kurt's back which had been there for at least 10 years or better and Kurt had not noticed any change in it. They did a punch biopsy. The Friday of Memorial Day weekend they called on the phone and told him it was Melanoma but not to worry because they got the whole spot out and they were sure it wasn't going to be a problem. They made an appointment for two weeks so they could check the lymph nodes and see what was happening. When that appointment came the swelling was worse. They decided to do a biopsy and it came back Melanoma. They then did a CT Neck, Chest, & Abd. Then they also did a PET Scan. The scans showed significant left supraclavicular and left axillary lymphadenopathy. A needle biopsy of a node showed metastatic melanoma. The Oncologist that he saw a Park Nicollett in Minneapolis said it was Stage 3 and the best treatment would be Interferon but it would be extremely harsh on the body.

Our daughter works at Mayo Clinic in Rochester. Kurt had also worked there one summer and one of the doctors that they both were associated with was very concerned and he talked with Dr. Markovic who was a personal friend of his. It was arranged for Kurt to see Dr. Markovic. Kurt also met with an ENT specialist. ENT said that the mass was too large and going under the clavicle so surgery was out of the question at that time because it was such a vascular area that was involved. At the appointment with Dr. Markovic he suggested the best thing was a trial using Avastin. Kurt opted for the trial. We had received material prior to Kurt's appointment from Dr. Markovic on melanoma and treatments and outcomes. I asked Dr. Markovic what stage he thought it was and what type. He said it didn't really matter because it was serious. Come to find out later, they immediately classified as stage 4. At this time, I still never found out what type. My concern was for the 8 other children in the family in case it was familial or genetic in nature.

Kurt immediately started chemotherapy the next day. They called it the BEAM Study. It was one day a week, every three weeks by IV. He would receive Taxol, Carboplatin, and either Avastin or a placebo. They did three treatments and then did another CT Chest, Abdomen, & Pelvis. The results showed that the disease was continuing to progress. They then suggested protocol N0675 which was a combination of Temozolomide and RAD001, and the Taxol and the Carboplatin in pill form. (He was not getting the Avastin on the BEAM Study.) This would continue for 7 weeks. At the end of the 7 weeks they did a CT again and found the disease still progressing and now it appeared the lung was involved. They then decided to go back to the first treatment but not in the study so they could be sure he was getting the Avastin. They also decided to do it once every week.

Kurt tolerated all of the treatments fairly well with minimal side effects. His arm was starting to really swell from the edema due to the lymphadenopathy though and that caused considerable pain. They could not get the pain down below a 7 on a 0-10 scale.

Right before Christmas they repeated the CT. Some of the lymphadenopathy had gone down but it appeared to have spread to the spine and the liver. They could not do a treatment that week because his platelets were too low. They would proceed with treatments the following week.

Kurt had shown them a spot down in the rectal area in November and they said it was a boil and would get better on its own. He showed them again in December and they weren't really concerned. In January it was draining and smelling. Around January 15 while he was having his chemo, Dr. Markovic came in and looked at it and decided to hospitalize him and have it lanced. Instead the surgeons took him to surgery and excised and biopsied it and it was melanoma. The surgeons got Kurt's hopes up because they thought they could go in and do surgery and reduce the mass in his chest and arm area. Upon examination they said there was no way. It was way to extensive. He could not continue with chemo until the surgery had totally healed. His hemoglobin was also very low so they had to transfuse 2 units of blood. When he went in to see the Doctor in February they still could not do chemo. By this time he was having tremendous problems with his arm and he was getting very unsteady. He was hospitalized again the middle of February due to the pain. They decided to try radiation and Kurt thought it was to reduce the mass so they then could do surgery. It was just to control the pain. They never did.

Kurt was hospitalized again in March due to a severe rash. They figure it was just the cancer manifesting itself. They then at that point informed him and our family that to continue with any treatment would be more harmful than it would help. They wanted him to agree to no resuscitation but he wouldn't. He still felt he was going to beat the beast. I was finally able to convince him that it was for the best. He was transferred to a nearby healt care facility on March 18. He was getting 60 mg of Methadone and 45 mg of gabapentin three times a day. He was getting 100 mg of morphine every hour and sometimes if they were doing some type of care it was given every 20 minutes. All of this never really did cut the pain below a 7. He was also given drugs to try and calm him down so that maybe he would accept that he was dying. He lasted abou 2 1/2 weeks in the health care center.

I feel that the doctors could have been a little more informative to him and our family. I am not saying they lied but if we didn't ask the question they weren't about to offer the idea or answer. Going through something like this you don't know what all you are suppose to be thinking about or asking. At the time they said they had done everything they could they said it was a very aggressive and fast moving melanoma but never have told us what type. Never have said that maybe the family should all be checked or be watchful or anything.

I believe that no matter what the outcome was going to be the same. I have no bitterness and I am thankful Kurt was able to have the expertise and care available to him that he did. He fought very hard. It was just not meant to be. He is now out of that pain and despair and for that I thank God daily.

Thanks for listening to Kurt's story. He had a tremendous birthday the other day, I am sure of it. I passed along your wishes."

Rhonda Graner

My heart goes out to the Graner Family.

Being on the frontline of this war, I sometimes become numb on what is going on around me and what we are fighting for. This story helps me focus on the task at hand. We need to find a therapy that at the very least, stops the progression of this terible disease. We all need to work together to find a cure.

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.