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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LynnLuc's picture
Replies 1
Last reply 6/30/2011 - 7:24pm
Replies by: StevenK

Human Vaccine Used to Cure Prostate Cancer in Mice

ScienceDaily (June 20, 2011) — Mayo Clinic investigators and collaborators from the United Kingdom cured well-established prostate tumors in mice using a human vaccine with no apparent side effects. This novel cancer treatment approach encourages the immune system to rid itself of prostate tumors without assistance from toxic chemotherapies and radiation treatments. Such a treatment model could some day help people to live tumor free with fewer side effects than those experienced from current therapies.


The findings appear in the journal Nature Medicine.

"We are hopeful that this will overcome some of the major hurdles which we have seen with immunotherapy cancer research," says Richard Vile, Ph.D., Mayo Clinic immunologist, Richard M. Schulze Family Foundation Professor and a lead author of the study. Clinical trials could begin within two years.

Mayo's immunotherapy research led by Dr. Vile already shows promise in treating prostate cancer and melanoma. It also is a prime candidate for treatment of many more aggressive cancers, such as lung, brain and pancreatic cancer.

Among the team's findings: no trace of autoimmune diseases in the mice. The murine T-cells attacked only cancerous prostate cells, leaving the healthy tissue unharmed.

To develop this new approach, geneticists assembled snippets of genetic code from healthy human prostate tissue into a complementary DNA (cDNA) library. These bits of cDNA were then inserted into a swarm of vesicular stomatitis viruses (VSV), which were cultured and reintroduced into the test mice as a vaccine during a series of intravenous injections.

Development of comprehensive cDNA libraries from healthy human prostate tissue represents the key to successful immunotherapy. All infections, allergens and tissues, including tumors, have a unique fingerprint called an antigen -- a molecular protein tag that triggers a response from the body's immune system. Dr. Vile deployed the human vaccine prostate cancer antigens through the mutated VSV vector to raise a full-on assault from the mice's T-cells. After exposure to the mutated viruses, the animals' immune systems recognized the antigens expressed in the virus and produced a potent immune response to attack the prostate tumors.

"Nobody really knows how many antigens the immune system can really see on tumor cells," says Dr. Vile. "By expressing all of these proteins in highly immunogenic viruses, we increased their visibility to the immune system. The immune system now thinks it is being invaded by the viruses, which are expressing cancer-related antigens that should be eliminated."

Previous attempts to vaccinate against prostate and other types of cancerous tumors have been hampered largely by researchers' inability to isolate a sufficiently diverse and robust collection of antigens in tumor cells. Because of this, tumors often mutate and re-establish themselves in spite of the body's immune system.

The use of viruses as vectors for cDNA libraries overcomes the difficulty of isolating antigens in tumor cells by giving the immune system a more complete picture of the cancerous invader.

This study was a Mayo collaboration with Alan Melcher, Ph.D., and Peter Selby, Ph.D., both from the Cancer Research UK Clinical Centre at St. James' University Hospital and professors at the Leeds Institute of Molecular Medicine, University of Leeds, UK.

Co-authors of the article are: Timothy Kottke; Jose Pulido, M.D.; Feorillo Galivo, Ph.D.; Jill Thompson; Phonphimon Wongthida, Ph.D.; and Rosa Maria Diaz, Ph.D., all of Mayo Clinic; Fiona Errington, Ph.D.; John Chester, Ph.D.; Peter Selby, Ph.D.; and Alan Melcher, Ph.D., all of the Cancer Research UK Clinical Centre, St. James' University Hospital and Leeds Institute of Molecular Medicine, University of Leeds, UK; Heung Chong, Ph.D., of St George's Hospital Medical School, London; Hardev Pandha, Ph.D., of the University of Surrey, Guildford, UK; and Kevin Harrington, Ph.D., of the Institute for Cancer Research, London.

The National Institutes of Health, Cancer Research UK, The Richard M. Schulze Family Foundation, Mayo Clinic, and a private grant funded the study.

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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TracyLee's picture
Replies 10
Last reply 7/3/2011 - 8:11pm

Hi y'all,

Well, as a normally fairly rational person, I've toppled over the abyss this week. If i had the luxury of 1) staying home  2) bawling my eyes out   3) going far away (who cares where?!)  I would have done it!

I had my re-check with Dr. Peri. Since I'm HIS first ipi patient, not a lot he can tell me, other than to confirm that I seem to be responding and that he'll contact Dr. Sharfman at Johns Hopkins next week to review. After the scans following the 4th ipi, if my swelling hasn't gone down a lot, then radiation and or surgery. Yippee. NOT.

My youngest (14) daughter is plucking my VERY LAST nerve, and I simply have no energy for her attitude. Anyone else struggled with normal life colliding with ipi fatigue/reactions? How do I keep slogging through all of this?!

We are on vacation next week, camping at a Christian campground. There's a ton of activities so no excuse of "I'm bored". Can't wait for the change of scene, then third ipi on July 8.

I feel GUILTY for feeling bad, because I'm really having minor ipi issues compared to so many awesome folks on here. Who am I to whine and cry? I'm not happy with myself, or my kids. I'm still working full time (hello? mortgage needs to get paid!), have insurance, my husband is trying hard to be supportive, I just don't like feeling like such a wimp.

Thanks for letting me vent, I pray daily for my friends here on the board.


Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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jimjoeb's picture
Replies 10
Last reply 7/4/2011 - 10:48pm

Well I met with the oncologist today. I am offered two options:
a) monitoring and follow up
b) standard interferon protocol
There is a possibility of the ipi trial at McGill for which I may be eligible. I need to learn about ipi, its benefits and side effects. ùmy oncologist would refer me there if I am interested.

Does anyone have info on trails for the use of ipi for prevetion of recurrence in stage III and the side effects and benefits

I need to let him know next week. If I choose the interferon it would commence as soon as I am deemed to be healed from my most recent surgery.

I intend to think it through but at this point, I see myself declining the interferon treatment and proceeding with the monitoring approach by the cancer treatment team and keep my eyes open for interesting trials. I will support the monitoring by the cancer centre with my own monitoring, my dermatologist's and that of my family doctor. In addition, I will be supported by my naturopathic doctor.

I am a very healthy person who looks after herself from both a nutritional and fitness perspective. I goes against my nature to take something that would both in the short and long term damage my overall health in hopes of delaying the chance of recurrance by a few months. I have the additional anxiety of being at high risk for breast cancer. I am closely monitored for that as well. My heart says stay strong and watch for a better medical treatment.

I welcome any thoughts and experiences, particularly from those who have declined interfereon. What percentage of stage IIIa patients refuse it?

Be Not Afraid-God is with you always Stage IIIa

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Banu's picture
Replies 13
Last reply 7/8/2011 - 2:43am

Hello everybody. I want to extend my best wishes to all of you who are courageously fighting melanoma. There are many advances in the field and I am glad to hear that some of you are benefiting from them.

Here is my question and dilemma. My father had been diagnosed as stage IV in December of 2009 with 2 mets in the lung, larger one about 30 mm, and a small thoracic spot. He is now 75 years old. Before we started therapy, we consulted with 2 doctors. One of them said that since my father is quite healthy and strong and the disease seems to be slow progressing, we should start with ipi first and give it a try for longer term benefits. The other one suggested to start with MEK inhibitor, because my father was BRAF positive. They did not have PLX4032 available in the trials at that time. The doctor said that ipi has a low response rate and we still have time to try it, if we fail MEK inhibitor which is directly targeting the tumors. My father started the MEK inhibitor trial around April 2010 and did very well on it until February 2011 with tolerable side effects, a lot of energy and up to 30% shrinkage in lung tumors. In January 2011, he found a bump getting larger in the groin area and on February 4th, we found out that he has four small lesions in the brain. He was taken off MEK. He started corticosteroids and had SRS for the lesions in the brain. The plan was to start ipi as soon as steroids were discontinued. In the meantime, we also tried PLX4032 which did not help much as at least 10 subcutaneous lesions and other smaller lesions are visible in the CT involving pancreas, small bowel, stomach etc. This was from the May 16 scan. The doctor prescribed Yervoy, however, the FDA approval worked against us. We have been waiting for approval and have been denied and appealed in the last six weeks. If ipi was still in compassionate use, we could have accessed it 6 weeks ago. The oncologist said that he never thought the FDA approval would actually cause such an access problem and felt really bad that we could not have access to it in a timely manner. In the meantime my father lost more weight. Since February, he lost about 25 lbs. His energy levels are down and he moves very slowly. I forgot to mention, that his follow up MRI showed one brain lesion smaller, the other 3 larger and 6 more smaller lesions for a total of 10. The radiation oncologist said the 6 new lesions were probably microscopic in the first MRI. So, my father had WBR the first two weeks in June to get rid of any other mircroscopic melanoma and shrink others. The plan was to get Yervoy at the same time, which did not happen. Now, his doctor wants to give him carbo/taxol as a bridge therapy until Yervoy becomes available. I told him that we have an opportunity to have access to ipi in compassionate use in Europe and asked him, if we should go that route. Even though he originally wanted to start my father on ipi/Yervoy after PLX4032, now he says that my father is deteriorating fast and he wants to stop the tumor growth and hope for shrinkage. He said that it takes a long time for Yervoy to work (months) and we may get a faster result with chemo (weeks). He also added that Yervoy works best when the patient is at his strongest, which does not apply to my father anymore.

My questions are:

1) Should we start carbo/taxol combo? Does anybody have experience with it? I am concerned that chemo may suppress my father's immune system further, but I also heard that sometimes chemo or even the flu may wake up the immune system? Any thoughts?

2) Should we start Yervoy or is it too risky considering the long wait and my father's condition?

3)Are there any other suggestions?

I now regret not having tried ipi at the very beginning and opting for MEK inhibitor instead. At least, we would have known whether my father is a responder or not. I have to admit that I feel responsible since I was helping my father make decisions. We thought that we still had time, if and when we failed the inhibitors, but FDA approval got in the way. At the time, we discussed that ipi is going to be around and most likely FDA approved, but we did not know whether or not MEK will be available in the future, so we decided to try MEK while we had an opportunity to do so. I find it very unfortunate that patients cannot have access to drugs when they most need it.

I would appreciate your feedback.

Many thanks.

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newmanmark's picture
Replies 7
Last reply 7/2/2011 - 10:16am
Replies by: nicoli, DeniseK, King, JTA, Fen, lhaley, akls


I am still anxiously awaiting my CT scan on July 11th.  This wait has been awful.  I am unable to concentrate at work and have been distant with friends and family.  I'm sure a lot of you can relate.

I am concerned that the melanoma has returned to my liver.  I have been experiencing mild discomfort and light pain in my upper right abdomen area, just below my ribs.  The research I have done suggest that this could be the swelling of the liver due to the melanoma.  I am a stage 3C patient (8 nodes infected) so I am hovering awfully close to Stage 4.  I'm hoping that this is not the case but you never know.

Has anyone else out there had these abdominal issues only later to find out that its not melanoma.  Could this be a side effect of the 7 months of Interferon treatment? Any thoughts or words of encouragement?



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lhaley's picture
Replies 14
Last reply 7/1/2011 - 12:40pm

I'm stunned right now.  I had surgery 4 weeks ago tomorrow.  Started radiation along the ulner nerve on Monday. On Tuesday I actually saw a lump on my lower arm, about 4 inches below the surgery site. When I went into radiation I pointed it out to the radiologist. She was concerned but thought it could be a blood vessel.  I thought it got smaller the next day. 

Today I had an appointment with my local oncologist (happened to be scheduled appointment). The radiologist had called her. She thinks it's melanoma. Said it felt exactly like the  tumor that she felt on me last summer.  Has a call  into my mel specialist for the next step. 

It makes sense because all of a sudden the nerves were really bothering me again on that arm. I was hoping it was from using it to much and the positioning during radiation.   What doesn't make sense is that the first node was closer to the arm pit, the second one was closer to the elbow, this one if it is mel is on the other side of the elbow.  Doesn't disease traditionally follow the pathway to the heart?  It's going in the wrong direction.

A break of more than 4 weeks would sure have been appreciated!


5 year cancerversary of stage IV is July 6th.  Would like it to be while I'm NED!!

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S o o z y Q's picture
Replies 2
Last reply 6/30/2011 - 11:32am
Replies by: MichaelFL, Janner

My 11 year old daughter had a very strange irregular bordered lesion removed on her left lower eyelid yesterday. Bonnie posted a picture for me on the Facebook site affiliated with MRF. They feel it is "highly suspicious" for melanoma. I have family backeast who insist that she should have had a frozen specimen done yesterday to assess if it WAS melanoma, and then removal until clear margins right then?? From all I have read, if one presents with a specific lesion, they initially excise and send off to path??? What are your opinions on this?? Also, we are in Arizona--does anyone have any suggestions for drs who ate good with melanoma here. She is seeing Phoenix children's hospital physicians presently. Thank you in advance.

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Anonymous's picture
Replies 9
Last reply 7/3/2011 - 3:21pm

I'm fairly new to melanoma skin cancer.  I haven't been on this website that often since my diagnosis was a stage 0 melanoma, and not that serious.  After reading a recent post on sun, I am wondering if my dermatologist is too relaxed about sun exposure??.  He did not comment at all on my tan lines at my annual skin examination.  He said be sun smart, but not paranoid and to prevent a sunburn, but did not say to prevent a tan.  I have a skin type that develops a deep bronzed tan even with spf protection on.  I have spent time searching the web and find conflicting information.  I want to be smart, but I do still enjoy the sun.  Mind you, my tan is NOTHING like it was before.  I used to use baby oil and loved a burn and had very dark tan lines.  They are subtle now, but still there.  One of my kids has my skin type.  He freckles and tans very easily.  The others are fair like dad.  I put same sunblock on all.  My fairer children do not develop a burn nor do they tan.  The one like me tans through the sunblock.  Why is it so hard for my skin, and my one son, to avoid a tan, yet so easy for my fairer children?  What should I be doing?  It isn't practical to stay inside from 10-4.  That just won't happen.  Life would escape and we'd have been indoors all day.  Should I go to beach and pool from 10 -12 and avoid afternoon sun?  What is worse sun?  TIA!

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nickmac56's picture
Replies 12
Last reply 5/14/2013 - 6:21pm

I am of a mind that alternative treatments as varied as coffee enemas, high dose Vitamin C, turkey trot mushrooms, clinics in Mexico are bunk and a way of nefarious people preying on the fears of people with serious diseases with the objective of extracting their money. 

My wife has very advanced melanoma - at this point it is at  the deadly disease stage with the dying part not that far off. Conventional therapies have failed, as have the new wonder drugs (Yervoy). She could go through a few more very tough chemo/biological regimens, but the evidence on their success is miniscule - naybe eke out a few more months but at a hihgly copromised quality of life. Especially if she has to treat more brain mets and lose more brain function.

So her therapist suggested she look at this alternative treatment - indicated in the subject line. I haven't found anything on this board that has looked at him or his theory and found compelling evidence to stay away, as I have had with researching  other suggestions from well meaning friends.

Anyone know about this, and care to offer facts or an informed opinion based on their research? I am not interested (for the sake of all of us) in rekindling the entire alternative medical approach debate. I am just interested in this one approach and this one clinic and if anyone knows of anyplace or information nexus where I can find anything about them which has a shred of evidenced based outcomes.

thanks, Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Some are from Asco's not a fancy website, but it's mine!

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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MariaH's picture
Replies 3
Last reply 6/30/2011 - 5:28pm

My husband Dave and I met with the thoracic surgeon today and scheduled a bronchoscopy for Friday.  The mass seen in Dave's CT scan is multiple matted lymph nodes (the largest measuring 3.7 cm in short axis).  We were told that it is not surgically resectable.  The biopsy will reveal whether it is the melanoma coming back or possibly a lymphoma.   Regardless of what it is, it looks as though since we can't cut it out, and systematic treatment is on the horizon.  My question, though, is if it IS melanoma, do we try IL-2 first and then switch to IPI if it doesn't work?  Or has IPI shown to wipe out melanoma (not just prolong survival)?

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laneyb's picture
Replies 4
Last reply 6/30/2011 - 2:56pm

I had a melanoma on the bottom of my toe in August 2010. In September, after two positive lymph nodes, I had a complete inguinal lymph node dissection - superficial and deep. I recovered well and went on with life and interferon (another story). Though I had some swelling and numbness in the thigh, I was doing well. Then, about 4.5 months after surgery, my leg really started swelling. Sensations at first, and then size increases. I finally got in to see a lymphedema specialist, who recommended we start with compression. I wore a 30-40 mmHG, thigh high garment for about 8 weeks and went back to the doctor complaining that it only worked on my lower leg. From the knee up, the swelling got worse.

So, now I'm scheduled to see an occupational therapist to do the complete decongestive therapy. I'm looking forward to the end of that, and hope it helps. But, in some ways, the therapists seems stumped by the swelling in the thigh. Graduated compression garments don't apply as much pressure above the knee where I need it, so I'm worried that all this time and money might be for naught in the end.

Does anyone have experience with such thigh swelling? Is there a better garment than just the thigh high compression hose?

Thanks so much for any information.


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stretch's picture
Replies 14
Last reply 7/1/2011 - 11:27pm








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NancyGM's picture
Replies 6
Last reply 6/30/2011 - 10:53am
Replies by: LynnLuc, Vermont_Donna, Anonymous, boot2aboot, djpayn

I just got word after having a hearing with a disability hearing officer, which was the first step in the appeal process. I was well prepared and presented phsical therapy records, medical records and  letters from doctor and  employer.  I had gone back to work part time at job where I earned under the limit of $900 per month. I recently left this job stating that I felt I still had residual effects ( i.e. fatigue and shoulder issues after lymph node disection) and because my immune system seems to be compromised as I constantly caught viruses from the young children I worked with.

My docto'rs letter stated my life could turn around at any time. The reviewing doctor's advisory opinion was that "fatigue post chemotherapy would limit claimant's physical function to lighter work". The work  I have always done, as a preschool teacher is described as light work in the Dictionary of Occupational Titles.

I even brought up a case precedent that was set in August of 2010 when a judge ruled in district court that cancer is a disability under the American's with Disabilities Act Amendment Act even if it is in remission [Hoffman vs. Carefirst of Fort Wayne, 2010 U.S. District Lexis 90879, 8/31/2010 no. 1: 09-CV-251 ]. She did not comment on this.

Next step is to wait up to 9 months for my hearing with an administative judge. I will be able to keep medicare and SSDI because I filled out a form- which one must ask for-to continue benefits. I need to find an attorney who is willing to take on this case probono since I would not be getting a lump sum should I win.

So, please be warned going back to work can be used against you when your disability is reviewed a the 3 years "free of neoplastic disease" mark. By that time one is considered medically improved under their guidelines.


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Lisa13's picture
Replies 13
Last reply 6/30/2011 - 11:28pm

There is so much talk about all these wonderful new treatments for BRAF positive people.  Don't get me wrong, I'm extremely happy for everyone who will benefit from these drugs - they've come a long way!  That being said, what about the rest of us?  Is research now heading into the direction of the wild types?  I got so excited about the new vervemurafenib drug until I found out it was only for BRAF positive people. I truly hope that they find something for the rest of us so that we too can get excited about something.

I asked my surgical oncologist to test my tumour for all mutations so that I could be prepared going forward.  I'm happy I signed my tumour over to the lab for TIL testing because that could be an option in another 6 months.

I'm so thankful for all these breakthoroughs. I do believe that survival stats will double within the next 5 years.

Best of luck!

Lisa - Stage 4

Many impossible things have been accomplished for those who refuse to quit

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