MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Shelby - MRF's picture
Replies 8
Last reply 1/21/2011 - 9:03pm

Can you spare a few minutes to take a survey?

Synovate Healthcare is a medical and healthcare market research firm.  They are conducting a market research project and would like to ask for your assistance.  This is an opportunity to offer your insight and perspective regarding treatment for metastatic melanoma.  To complete the survey, you will first be asked a few qualifying questions.  In return for completing the 25 minute survey, Synovate Healthcare is offering $35 for your time and a donation to the MRF.

Synovate Healthcare will keep all of your answers completely confidential and results will only be reported as a whole – not as individual responses.  Please note that when you click over to the survey, you will be redirected to the Synovate Healthcare site.  The survey is done online.

If you’ve been diagnosed with melanoma and are interested in participating, please use this link: 

Once you have completed the survey, there will be a page to specify where you would like your honoraria sent. Your participation is enormously helpful! 

Shelby - MRF

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Kim K's picture
Replies 7
Last reply 1/21/2011 - 9:53am

I guess it is about time finally (after prodding my docs).  Brain MRI, PET/CT whole body, CT chest without and with contrast.  For some reason they only wanted to CT the chest, as if mel dosen't like to go to the liver, GI tract or anywhere else in the abdomen/pelvis.  At least I won't have to drink the nasty contrast this time.  I am getting over a stomach bug and don't want to revisit cherry flavored chalk.  I didn't push too hard on the abdo. CT figuring that if anything was there, the PET/CT should pick it up.

My main goal for this visit is to get a scanning schedule down on paper so all my docs are on the same page.

Take care all!

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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Anonymous's picture
Replies 4
Last reply 1/20/2011 - 11:49pm

I have some new liver mets and was wondering what are the most effective treatments for liver mets.  I do not think they are good candidates for surgical removal, it is more multiple areas of uptake spread throughout the liver.

Any ideas?

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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wgalinat's picture
Replies 10
Last reply 1/20/2011 - 11:05pm

Hi all.  It's Warren Galinat.  Some of you know me if you are regulars for the last few years.  I'm fine, doing well, and move to las Vegas to be close to my son and his young family.  I'm posting my short story one more time here for those that might be in Stage 4 and looking for help.  NIH saved me, I hope it may do the same for you. 

“White Brows”, my journey through stage 4 melanoma by Warren Galinat and in memory of my good buddy Mark……… 

I am 55 years old. My parents are of German and Irish heritage. I was born with very blonde hair and light skin tones.  We are a middle class, well-educated, hard working family.  My dad graduated with an engineering degree from M.I.T.  My grandfather oversaw carpet-manufacturing plants in the south.  I’ve got two brothers who live in the  northeast. Wayne is a financial business owner, and Brian is the orthopedic surgeon.  I’ve lived in south Florida for the last 15 years.  I retired near 50 after working almost 25 years as a regional controller for a division of Marriott International.  I’m a very proud dad of Jeremy and his younger sister Nicole. Jeremy, now 26, is the corporate finance manager for Wynn Resorts with operations in Las Vegas and Macau, China.   Nicole graduated at the top of her class at Stetson University.  While giving the commencement speech at graduation,  my dad said to me “could you have imagined this?” While choking up slightly I said “absolutely”.  She’s an analyst now for Franklin Templeton Investments in Fort Lauderdale, Florida. You may know it as the 22-story glass building that had 821 windows blown out by hurricane Wilma. 

I have been a life long surfer.  The beach is my favorite spot. When moving to Florida I also became a decent golfer.  I had my current house built on the 18thfairway of a golf course. Upon retirement, I surfed each morning and golfed afterwards.  Perhaps too much in the sun time for me you might be thinking?  Although I had been very healthy for almost fifty years of my life, today I’d agree with that assessment.  

My local skin doctor, Tom Connelly, and I became pretty good buddies.  He said the money he made cutting and burning non-life threatening skin cancers off me paid his kids way through college.   I got smarter at the beach after each doctor visit.  I was using more sunscreen, surfing with a cap, and keeping on a t-shirt. No doubt a bit too little and a bit too late! 

In June of 2001 things got much more serious as my life with malignant melanoma began.  Dr. Connelly performed an excision of a 1.12 mm melanoma in the middle of my back.  It wasn’t very big by all standards and the hope was it would not spread.  Two years later, September of 2003, I was dealt what we call in poker a “bad beat” hand.  I had nothing visible on the skin itself but under it, and a few inches from my first site, I felt the moveable subcutaneous mass.  Tom cut the 3.0 cm’s out and sent it to the lab.  He called me into the office when getting the results. When it was over he gave me one of those two handed farewell shakes to my right hand. You know what that means. He is a great guy and his skillful work on me is clearly a reason I had a fighting chance for a future.  At this point however there was nothing more Tom could do for me. 

Upon giving myself a few days to reflect back and do some reading on my future, I told my family and friends.  I wasn’t thrilled about doing it either.  Nearly everything I read was just dreadful.  You feel more sorry for them then you do for yourself. 

I should say at this point that upon my retirement from Marriott I made the blunder of declining continuing medical insurance benefits.  Believing my excellent health and fitness of the past would remain in the future was a horrible assumption.  Fortunately my brother Brian went into high gear after hearing from me.  He arranged meetings with some of his doctor buddies, Dr. Conway of Delaware and the highly respected Dr. Michael Mastrangelo of the Jefferson Medical College in Philadelphia.  He also arranged for all the scans and lab work that I needed. His most important contribution to my welfare was researching the division of clinical sciences, National Cancer Institute, at the National Institute of Health in Bethesda, Maryland. 

On October 29th, 2003 I went to NIH and met Kathy Morton, RN, for a screening appointment for eligibility into one of NIH’s treatment protocols.  I would later tell her, when things turned for the worse, I know for a fact that God had chosen her as my angel on earth.  She has been there for me every step of the way for nearly five years now.  I can’t say enough nice things about her and her professionalism in such a heart-wrenching job. Through the years people have said to me “you know you’re a hero for going through all this for five years because your efforts might save a bunch of others”.  I’m no hero; I’m just a survivor.  It’s people like Kathy Morton that dedicate themselves to this cause (added to the fact that her son is overseas protecting the future rights of all Americans), who are our real heroes! 

The letter from Dr. Steven Rosenberg, M.D., Ph.D. said I met the qualifications.  Thank goodness. On November 4, 2003 I signed their paperwork and my journey began. 

 Step one was the NCI protocol number 6211,  “to test the actions of experimental vaccine(s) on the cells in your immune system to determine if it is effective in “turning on” your immune system to fight against your cancer”. The injections under the skin of my thigh came every 3 weeks. The immunizations, along with blood tests, x-rays and scans, took place over one year. You also make friends with the ladies in the Apheresis lab during this time.  Here, using the cell-separator machine, some lymphocytes (white blood cells) are removed and tested to see how the peptides are performing. The hope of course is your tumor would not return. Just what the doctor ordered right?  Well for me, not exactly. 

Fast-forward a couple of years to March 2006.  Back in Florida after playing eighteen holes I took a shower and felt something on my back again.  Come on, this isn’t fair!  It can’t be, can it?  I was planning just to go to Dr. Connelly to have him figure out what it was. Probably just a cyst. But I called Kathy Morton and told her about it. She said in an unusually stern voice, “Warren you have to come up here for that”.  Geez, I was so hoping I was done with this melanoma cancer. 

In the middle of 2006 I was back on the plane heading north.  My older brother Wayne lives just off the two major highways to both Baltimore Washington International Airport and NIH.  Through all of this he and his wife have made there home mine and gave me transportation to get around.  It’s made things so much easier and I sure appreciate them  ‘babysitting’ me.  Two of Dr. Rosenberg’s surgeons removed my third melanoma inches away from the other two.  They also captured and would later grow the tumor killing cells (TIL) that would play a major role in me being here now. 

 The new scans also revealed a ‘spot’ in my right lung.  Horrible news.  I’m feeling I’m in deep trouble now.  This nasty cancer won’t leave me alone. The scary things I read are now happening to me.  It’s hard not to scream out a string of ‘F bombs’ and ‘Why me’s’ but what’s the use?  It’s pointless right?  

Shortly it is decided that I should be admitted into NIH as an inpatient on 3NW of the sparkling, nearly new Mark Hatfield Clinical Research Center.  The huge center atrium with halls of rooms circling it up for several stories reminds you of a first class Marriott Hotel.  The service provided by the doctors and nursing staff is second to none.  I’m not a spokesman for NIH but I highly suggest you contact them should the need ever arise.  Knowing I did not have, and could no longer acquire health insurance with stage four cancer, they have never asked me for a dime.  My accumulated bills would surely exceed six figures, a debt I could never payback. To say that I’m very grateful is an understatement! 

My first round of Interleukin-2 began flowing into my veins in June of 2006.  It’s the opening step preferred by NIH when you get to my stage.  I did eight rounds of it in one week, got a week off, and returned for eight more.  The going in part is simple.  They don’t tell you too much about what happens to some of us afterward.  It totally crushed me for days.  This man-made HDIL-2 ‘juice’ is the nastiest thing ever put in a bottle, in my opinion.  After recovering for another full week at Wayne’s house, I got three weeks in Florida to think about coming back to do it all over again. I did it.  The final results came back, no tumor regression at all.  Now I am in for a real struggle. 

Things are now moving rapidly.  Dr. Rosenberg recommends number 06-C-0136.  Weird how one seems to remember study numbers. My memory is horrible but I still can’t get this number out of my mind.   This is the big one. A ’Phase II Study Using a Myeloablative Lymphocyte Depleting Regimen of Chemotherapy and Intensive Total Body Irradiation followed by Infusion of Tumor Reactive Lymphocytes and Reconstitution with CD34+ Stem Cells in Metastatic Melanoma’.  It’s more than a mouthful. 

 My doctor brother had his own ideas and we schedule a meeting with Kathy Morton and Dr. Rosenberg.  You see Brian is a surgeon and all surgeons favor using their skill,  the knife, best.  While in a room on 3NW, Dr. Rosenberg explains to us that cutting the lung tumor out is possible but would not ‘solve’ the issue in his opinion.  He favored the research study as a more complete approach that just might eliminate the tumor as well as ‘possible lingering microscopic melanoma’ previously undetected in my body.  Perhaps a full lifetime cure!  To do nothing at all gave me a life expectancy median of just five months.  Brian was now convinced and I was totally sold on it.  

Dr. Rosenberg has devoted most of his adult life to research, science, and helping people with melanoma.  His PhD is from Harvard.  I believe he has been with NIH for thirty-five years.  He is without a doubt the best there is.  Following our meeting my brother Brian said to me “you can just see the passion in his eyes to beat this”.  His theory behind this clinical trial is that capturing/growing the tumor-fighting cells taken from a melanoma tumor can more effectively fight melanoma when a patient’s immune system is suppressed and thus can’t attack them before they do enough good.  Previously he found some success without the intensified full-body radiation but their final results failed to satisfy him. 

I was admitted again on October 11, 2006.  I had to pass a series of tests and produce enough stem cells to be able to proceed.  For five days I got the filgrastim shots twice a day to pump up my white blood cell counts.  The Echo, eye and dental consult, and PFT’s (breathing test) all proved to be without any issue.  My stem cell count was among the highest achieved.  Following a visit to the radiation professionals, and the placement of a Neo-Star catheter in my chest, I was all set to proceed. 

My overseeing physician, Dr. Sid Kerkar, gave me one week off before Protocol Number 06-C-0136 would attempt to save my life.  I would be the 6thpatient in the country to be enrolled in this study. 

The two chemotherapy medicines began dripping into my blood stream via the IV chest catheter on October 26th, 2006.  The ‘real deal’ starts now.  A lot of things go through your mind.  First and foremost, your family and friends. Then all kinds of stuff if you let it in.  You need ‘brain control’ to keep things calm, and good sleep is a requirement for your mental health.  I have been able to take what’s dealt to me in life. A whiner, I’m not.  Nor am I a social butterfly.  I stick pretty much to myself.  I told everyone not to visit me during this. I knew pretty much what was coming and didn’t want them to see me in misery, hair falling out, and hooked up to 4 wires and 6 fluid bags hung off a rolling steel pole. It’s just not my style.  I knew they would pity me, go home and have it ruin their day or week.  No thanks.  I’ll suck it up.  In retrospect I had no clue.  The entire thing hit me like a Mack truck.  I think us skinny guys really get stung the hardest, especially by the new, higher dose full-body radiation that follows.  

On the fifth and final day of chemotherapy I was wheeled down to begin the total body irradiation (TBI).  In the lead-walled room I received two treatments a day for three days.  There is no pain from this.  The completed, combined treatments take three days to eliminate my immune system.  You have to be careful not to cut yourself and keep your immediate environment extra clean during this time.  November 2nd, 2006 I was given my tumor fighting cells (TIL) back. They had now grown in the billions.  They arrive in one bottle.  It is special moment for everyone involved.  It flows for about thirty minutes.  

Remember the nasty HDIL-2 I got several months ago?  Well here comes 10 more rounds over the next several days.  Ugh!  The day after you receive the TIL cells, your Stem cells (CD34) begin flowing back through your IV.  Though my immune system came back slowly, the dangerous side effects possible from the entire regimen were nonexistent. 

That being said, the next two weeks in the hospital room were very tough on me.  I came into this weighing 163 pounds.  I was down to about 128.  I’ll skip the details but you can imagine what you go through.  I had another week of scheduled hospital confinement left when I asked if I could recover at Wayne’s house.  My thoughts were those of a change in my environment would surely help me to eat better and begin to move around.  The doctors gave me an out pass.  One more blunder on my part.  Without the hydration constantly flowing from my IV line I could not possibility maintain even the 128 pounds.  My stomach was so small I just couldn’t eat much.  I fell to 119 pounds in five days when I asked my brother to please bring be back to NIH.  

 Back in the hospital, plugged up to the hydration IV again things got better.  The NIH nutritionist gave me personal service, outside the normal cafeteria, with food prepared especially for me.  She also hand delivered it to me.  She was a major factor in my ability to go home, once again, in just five days.  Thank you very much! 

Today is Groundhog’s Day, February 2nd, 2008. Five years from my original diagnosis.  Borrowed time?  Perhaps. Cherished time?  No doubt about that. Last year on July 4th  I got a new name,  ‘Grand Pa’.  Jeremy’s daughter Juliet is picture perfect!  I owe my life to the wonderful people at the National Cancer Institute at the National Institute of Health. Sure, my skin pigment is gone.  My hair and eyebrows are back, completely in white. Another NIH survivor pal refers to our new look as “powered donuts”. 

 I have been going back for blood tests and scans/mri’s every other month.  My first visit back made everybody very happy. The ‘CBS 60 minutes’ crew was filming Dr. Rosenberg and I when he gave me the good news. My lung cancer was gone completely. “Cured” he said. Thank you and thank the Lord.  I have been clean ever since.  There are some current kidney issues, and lingering nerve damage from the awful shingles that came later on.  The prescribed medications appear to be helping in both areas.   

I would like to thank everyone that took the time to read this.  I hope it helps you in some way.  The  NIH website is  It has current clinical trial information as well as contacts, addresses, and other pertinent information.  If you have questions for me you may reach me at


In closing I would like to quote the very courageous Jimmy Valvano from his speech during the 1993 ESPN ESPY Awards. He was pleading to his audience to give money for cancer research saying, “it may not save my life, but it may save your children’s life”.  Stricken with tumors everywhere he struggled to stand before a huge crowd and the national television audience.  As he focused in on the camera he said 

“Don’t ever give up.  Don’t ever give up.”  “Cancer can take away all my physical abilities. It can not take away my mind, it can not take away my heart, and it can not take away my soul”.

Anything is still possible in my future.  I have a good prospective on reality.  One thing is for sure.  I will never give up.  I hope you never do either.   

"don't ever give up" "don't ever give up" ( the Jimmy V Fund for cancer research)

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ValJaneMB's picture
Replies 29
Last reply 1/20/2011 - 9:24pm

Hi Everyone.  I have been lurking on this board for a few years now but now realize that by joining I will get the info. I need to help me decide on my next course of treatment.  As you can see by my profile, I am a 57-year old woman with what my Oncologist calls 'low bulk' disease even though it is Stage IV.  I would like to hear from anyone who has been through Interleuken 2 therapy.  As a Canadian, I will have to travel to Pittsburgh for treatments.  Right now, I do not know the hospital.  Everyone has posted lots of information on side effects, etc.  But how safe is it?  I have the following choices:  1.  wait and see with scans every 3 months.  2.  Dacarbazine treatment here in Winnipeg.  3.  Interleuken 2 treatment in Pittsburgh.  Which has a better chance of success?  Which treatment has the worst side effects?  Does anyone know how quickly melanoma progresses from the lymph nodes to other areas of the body?  That would help me with the 'wait and see' choice.  I forgot to mention that for some reason, the one year of Interferon does not make me eligible for IPI trials.  Only by trying and failing Dacarbazine or IL 2 will I be able to receive IPI.  Who knows why?  Anyway, I am thanking everyone in advance for responding to my questions.

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Linda J's picture
Replies 1
Last reply 1/20/2011 - 9:21pm
Replies by: King

So the new plan is to get at the ones in my brain with WBR starting Monday. That will last for 5 days and then I'll be doing carbo and taxol until I can get on braf trial that also targets the brain. That study is coming to Canada in about six weeks.
I'm wondering if other people have had experience with carbo and taxol.
I believe that God has a plan of healing in my life. There is still hope in the midst of what seems to be extreme darkness night now.
Linda J

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Nebr78's picture
Replies 1
Last reply 1/20/2011 - 8:40pm
Replies by: W.

Has anyone had any bumps, lumps on their body and had them treated with radiation?   If so, did it work.   I have 2 lumps (tumors), one on side of face and another in front of right arm pit.  They gave me 7-8 strong radiation treatments a few days ago. Nothing is new except the one on the face hurts like the devil unless i take pain pills.   Is Melanoma resistant to Radiation you think.     Retired in Nebraska

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Noramott's picture
Replies 7
Last reply 1/20/2011 - 4:35pm

I was just on here a couple of weeks ago asking for help for a friend that was diagnosed.  My husband passed away with melanoma 7 1/2 years ago, my mother passed away with it 37 years ago, my sister had one removed 17 years ago and thankfully is still with me.  Soooo, I go to the dermatologist every 3-4 months as a precaution because of the history and I have two kids, ages 15 and 12 ( the 15 year old already has had one removed between his butt cheeks...not a good experience for us or him).  Anyway, I went today and he removed a basal cell one, he thinks, but then said he has been wrong before and if it is a melanoma, it was caught early.  I wasn't worried.  I know that catching it early is the key, but all of the sudden it has hit me.  OH MY.  So pray.  You all don't know me, but just pray...for my kids....I am not scared, but then again, kind of.....................

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LynnLuc's picture
Replies 5
Last reply 1/20/2011 - 1:45pm

I wanted to share was released today...


Embargoed for Release
Wednesday, January 19, 2011
1 p.m. EST

NCI Office of Media Relations

NIH study in mice uncovers pathway critical for UV-induced melanoma

Scientists have made an unanticipated discovery in mice that interferon-gamma, a type of protein primarily used by the immune system for intercellular communication, acts as a promoter for the deadly form of skin cancer known as melanoma. This finding resulted from a series of experiments designed to understand how solar ultraviolet (UV) radiation causes melanoma. The results of this study suggest that interferon-gamma, which has been thought to contribute to an innate defense system against cancer, under some circumstances may promote melanoma and incite the development of tumors. The work, led by researchers from the National Cancer Institute (NCI), part of the National Institutes of Health, appeared online in Nature, Jan. 19, 2011.

Cutaneous melanoma is a highly aggressive and frequently drug-resistant cancer with rising incidence rates. The major environmental risk factor for melanoma is UV radiation exposure, usually from the sun, with the highest risk associated with intermittent burning doses, especially during childhood.

Over the past 10 years, the researchers used genetically engineered mice first to prove, and then to try to understand, the connection between exposure to UV radiation and the initiation of melanoma. The current work was the latest attempt to define the molecular mechanisms of this cause and effect relationship. The results of this study offer the possibility that the inhibition of interferon-gamma immediately after sunburn might block the carcinogenic activation of the skin’s pigment-producing cells, known as melanocytes, making it a potentially effective preventive strategy against UV radiation-induced melanoma, according to the scientists.

The key to the experiments, led by Glenn Merlino, Ph.D., Laboratory of Cancer Biology and Genetics, NCI, and research fellow and first author M. Raza Zaidi, Ph.D., was the development of a unique genetically engineered mouse in which the melanocytes were exclusively labeled with a green fluorescent protein. This fluorescent tag allowed visual tracking and specific purification of melanocytes from the mouse skin. For the first time this enabled researchers to evaluate the response of melanocytes to UV radiation exposure while residing in the natural skin environment of a living animal.

The researchers observed that UV radiation doses equivalent to what would cause sunburn in human skin resulted in increased numbers and movement of melanocytes within the mouse skin. A detailed analysis of gene expression changes associated with this melanocyte activation revealed abnormal expression of a number of genes known to be responsive to interferon-gamma.

When the function of interferon-gamma was inhibited at the time of UV radiation, the number of melanocytes and their movement remained normal, suggesting that interferon-gamma was responsible for the UV radiation-induced activation of the melanocytes.

The source of interferon-gamma within the skin was determined to be macrophages — cells that normally protect against infection — that had infiltrated the skin after UV exposure. The pro-melanoma potential of these macrophages was revealed when they were found to enhance the growth of melanomas when transplanted under the skin of mice.

This effect was abolished when interferon-gamma was blocked, corroborating its importance in promoting melanoma development. Moreover, when the scientists examined human melanoma tissue samples, they found interferon-gamma-producing macrophages in 70 percent of the tumors, supporting the idea that these macrophages can significantly contribute to the initiation and/or progression of human melanoma.

"We anticipate that this discovery may change how interferons are used in the clinic as anticancer agents," said Merlino. "Our findings raise the possibility that targeting the interferon-gamma pathway may represent a novel, less toxic therapeutic alternative for effective treatment of malignant melanoma patients, who currently have poor cure rates."

These studies were made possible through long-term collaborations with Edward De Fabo, Ph.D., and Frances Noonan, Ph.D., of George Washington University Medical Center, Washington, D.C.

NCI leads the National Cancer Program and the NIH effort to dramatically reduce the burden of cancer and improve the lives of cancer patients and their families, through research into prevention and cancer biology, the development of new interventions, and the training and mentoring of new researchers. For more information about cancer, please visit the NCI Web site at or call NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237).

The National Institutes of Health (NIH) — The Nation's Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit

Reference: Zaidi MR, et al., Interferon-gamma links ultraviolet radiation to melanomagenesis in mice, Nature, Jan. 27, 2010, DOI: 10.1038/nature09666.



Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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ockelly's picture
Replies 2
Last reply 1/20/2011 - 11:17am
Replies by: EmilyandMike, MaryD

A friend just sent me this link.  The article is very interesting... click the link to cancercommons at the end.... then Melanoma Therapy App.


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Anonymous's picture
Replies 0

Interesting article in the Guardian about what they are finding in the BRAF trials in the UK.

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filmer's picture
Replies 15
Last reply 1/20/2011 - 10:01am
Replies by: filmer, Charlie S, LynnLuc, King, Anonymous, Vermont_Donna, NancyD

I'm a 60 year old in great physical shape...except for the melanoma. I am looking for someone in a similar situation, or someone who can give me advice on my immediate path to prevention of a recurrence.

I was diagnosed with melanoma on my right calf in Oct. 2008. It was removed  by wide excision and my sentinal lymph nodes (right groin)  biopsied. The biopsy results were negative. 

Recently, I noticed swelling in the groin lymph nodes that were biopsied. I had surgery on dec. 8, 2010 to explore, and if necessary remove affected nodes. Melanoma was found in one node and a few others were suspect and were removed. 

Now, my surgeon and a medical oncologist he recommended at Mt. Sinai in Miami Beach have recommended Interferon treatment. Unfortunately, it did not seen a very palatable course of action due to the 3-5% success rate and the debilitating side effects and damage caused by it.

To get a second opinion, I have been to the Moffitt Cancer Center in Tampa, Fl. This is where my confusion starts.

The Dr.'s at Moffitt have a different philosophy: They conferred after reviewing all my records and tests and decided my recent surgery was "incomplete". They want to go back into the same area and "clean out " all the lymph nodes in my groin AND my pelvis on Feb. 10. My problem here is that I do not feel healed from the recent surgery (I still have a drain 6 weeks later) and they tell me there is a 30% or better chance of  serious "wound problems" with this surgery. I need some help with my decision . Has anyone out there been in my shoes?

Many Thanks!

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Hawaii Bob's picture
Replies 1
Last reply 1/20/2011 - 5:57am
Replies by: Kim K

This past summer saw a revolution in melanoma therapy. Patients whose melanoma lesions contain a mutation in the BRAF gene were successfully treated with a BRAF-specific inhibitor, PLX4032. Reports of the drug trial described shrinking tumors and improved health. Yet seven months after therapy began the tumors returned and resumed growing. Now, scientists at The Wistar Institute explain why: the tumor learns to signal around the blocked gene by adjusting its molecular wiring. They also show how to overcome resistance by simultaneously targeting multiple signaling pathways.

The researchers see this as further evidence that some cancers must be treated with multiple targeted drugs at the outset of treatment. Their findings are published in the December 14 issue of the journal Cancer Cell.

"The evidence suggests that targeting mutant BRAF can kill cancer cells, but it is not enough by itself to finish off melanoma," said Meenhard Herlyn, D.V.M., D.Sc., director of The Wistar Institute Melanoma Research Center and leader of Wistar's Molecular and Cellular Oncogenesis program. "The good news is that drugs are being developed to work in combination with BRAF inhibitors, which our data clearly shows is our best option if we intend to beat advanced melanoma."

Melanoma is the deadliest, most aggressive form of skin cancer. While surgical treatment of early melanoma leads to 90 percent cure rates, advanced melanoma is notoriously resistant to chemotherapy and has a tendency to metastasize, or spread, throughout the body. According to the World Health Organization, cases of the disease continue to rise, which has helped spur research into therapies such as BRAF inhibitors.

To study how melanoma responds to BRAF inhibitors, the Herlyn lab took melanoma cells with the BRAF mutation and tested them against a variety of anti-mutant BRAF drugs. When exposed to the drugs, the cells died off dramatically only to grow back again. In fact, cells that became resistant to one type of BRAF drug became resistant to all of them, which suggests that the cells were biochemically "rewired" in such a way that they no longer needed BRAF to form tumors.

"Cells are complex machines that work, essentially, through chains of biochemical reactions that we refer to as signaling pathways," said Jessie Villanueva, Ph.D., senior author on the study and staff scientist in the Herlyn laboratory. "Knocking out mutant BRAF shuts a major pathway down, but if some cells can use an alternate pathway, then they can survive."

To find out which alternate pathways the drug-resistant cells use, Villanueva and her colleagues looked for signs of increased activation among proteins along the pathways BRAF uses, as well as other pathways.

Their hunt turned up two paths that worked together to aid survival. First, they found that resistant cells used a protein similar to BRAF to carry the signal down the chain. Second, they found these cells received an additional boost from the IGF-1 receptor, a protein that sits on the surface of cells and sends signals that prevent cells from being killed. The resistant cells re-route the signal around BRAF by switching to an alternate protein (CRAF or ARAF), which promotes tumor cell growth, while IGF-1R signaling promotes survival of the resistant cells.

Fortunately, there are a number compounds in clinical development that could block signals along both these pathways. So-called MEK inhibitors target a protein along the same pathway as BRAF, and IGF-1 receptor inhibitors (and inhibitors of P13K, a protein that can be activated by the IGF-1 receptor pathway) block the cancer-enabling survival signal. To test these drug combinations in the BRAF-inhibitor resistant cells, the Herlyn laboratory used a tool they developed to simulate the real-world environment of human cells: 3-D melanoma tumor spheroids. Their 3-D tissue cultures allow melanoma cells to grow in all directions, much like a new melanoma tumor would grow after metastasis. As predicted, a combination of these two inhibitors killed BRAF-resistant melanoma cells in the Wistar 3-D model.

Moreover, the Herlyn laboratory confirmed in tissue samples from patients in the PLX4032 trial taken both before treatment and after they developed resistance that an increased expression of the IGF-1 receptor is associated with resistance to BRAF inhibitors. None of the laboratory-generated cell lines or the post-relapse patient's tumor samples analyzed had new mutations in the BRAF, NRAS, or c-Kit genes.

Additionally, the researchers noted an association between the loss of a tumor suppressor called PTEN, and resistance to BRAF inhibitors in melanoma cell lines. The scientists found that the relapsed tumor of one patient included in the study lost the PTEN gene, even though it was present before treatment. These findings suggest that loss of PTEN could be an additional way that melanoma cells gain resistance to BRAF inhibitors. The Wistar group continues to investigate these and other mechanisms of resistance, as they expect that several will likely arise given the heterogeneous nature of melanoma.

"Tumors are efficient engines of evolution they are going to find a way around most treatments, so we want to kill all the malignant cells from the very beginning," said Villanueva. "By targeting both pathways simultaneously you hit these cells with two punches from which they cannot recover."

"If you do this at the outset of treatment, we reason, it will prevent melanoma survival and hopefully improve patient outcomes," Villanueva added.

Support for this study was provided by grants from the National Cancer Institute and the Dr. Miriam and Sheldon G. Adelson Medical Research Foundation.

Wistar co-authors in this study include Adina Vultur, Ph.D.; John T. Lee, Ph.D.; Rajasekharan Somasundaram, Ph.D.; Mizuho Fukunaga-Kalabis, M.D., Ph.D.; Angela K. Cipolla; James E. Hayden; and Ademi E. Santiago-Walker, Ph.D. University of Pennsylvania School of Medicine co-authors include Katherine L. Nathanson, M.D.; Xiaowei Xu, M.D., Ph.D.; Phyllis A. Gimotty, Ph.D.; Bradley Wubbenhorst; Richard Letrero; Kurt D'Andrea; and Anitha Pushparajan. Other authors included Grant A. McArthur, M.B., B.S., Ph.D.; and Damien Kee, MBBS, FRACP, of the Peter MacCallum Cancer Centre in Victoria, Australia; Jeffrey A. Sosman, M.D., and Kimberly Dahlman Brown of the Vanderbilt University Medical Center; and Sylvie Laquerre, Ph.D., of GlaxoSmithKline's division of Oncology Biology in Collegeville, Pa.

Source: Wistar Institute


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Not sure if this qualifies as a "major breakthroug" as the original article's title states, but it is interesting and adds to the community's base of knowledge about melanoma genetics ...... Hawaii Bob, Stage IIA, Oahu, USA.......BTW, from the website "MedicalNewsToday" ......

Link at the bottom......

In a breakthrough that could lead to new treatments for patients with malignant melanoma, researchers from Mount Sinai School of Medicine have discovered that a particular protein suppresses the progression of melanoma through regulation of an oncogene, or gene responsible for cancer growth. The study is published in Nature.

Researchers studied the natural progression of melanoma using mouse and human cells, as well as patient samples and determined that the presence of a specific histone variant, which is a protein that helps package DNA, was directly related to the growth of melanoma. In all instances, researchers observed that as the melanoma became more aggressive, the presence of the histone variant macroH2A decreased. Researchers then manipulated macroH2A levels in melanoma and found that when they removed it in the early stages of the disease, the melanoma progressed more aggressively both in growth and metastasis. Adding macroH2A to late-stage aggressive melanoma cells created the opposite effect.

"We wanted to determine whether macroH2A is a passenger in this process or if it's crucial in the progression of melanoma," said Emily Bernstein, PhD, Assistant Professor of Oncological Sciences and Dermatology, Mount Sinai School of Medicine, and lead author of the study. When further investigating macroH2A function in melanoma, the researchers found that it regulates CDK8, a known oncogene for colorectal cancer. "CDK8 is highly expressed in aggressive melanoma, suggesting it also plays a major role in the process," Dr. Bernstein explained.

Through further functional studies, researchers found that eliminating macroH2A led to an increase in CDK8 expression, and the elimination of CDK8 in metastatic melanoma cells impaired their proliferation. These results suggest that macroH2A suppresses melanoma progression, at least in part, through the regulation of CDK8.

"Very little is known about melanoma epigenetics or the histone-mediated epigenetic changes in cancer in general, so these findings are a major step forward in our research. As we move ahead, we would like to determine how to inhibit CDK8 function, thereby inhibiting the growth of melanoma, as well as identify additional epigenetic changes in melanoma progression." said Dr. Bernstein. "What these discoveries really highlight is the need for further studies into the epigenetic code of cancer."


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New US National Comprehensive Cancer Network Guidelines for Melanoma Patients
"The National Comprehensive Cancer Network® (NCCN®) aims to provide people with cancer and the general public state-of-the-art cancer treatment information in easy-to-understand language. The NCCN Guidelines for Patients™, based on the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines™), are meant to help you when you talk with your doctor about treatment options that are best for you. These guidelines do not replace the expertise and clinical judgment of your doctor.

NCCN is pleased to present the new NCCN Guidelines for Patients™ on Melanoma. This 72 page PDF file is available for download at the link below. I believe newly diagnosed patients will find this booklet to be a very valuable source in understanding their specific melanoma, treatment options, etc., in a handy, "one stop shop" format.....


Hawaii Bob
Stage IIA
NED 2 years & 5 months (but who's counting)

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