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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Anonymous's picture
Replies 2
Last reply 7/3/2011 - 3:03pm
Replies by: cfw9186, LynnLuc

Check out the discussion on MIF (  anti PDI is more effective and has less side affects.  It is definitely going to be an exciting treatment.

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DeniseK's picture
Replies 5
Last reply 7/3/2011 - 1:08am

Hi All,

I just went to my surgeons yesterday for a check up and discussion.  He went to a tumor board on Monday and discussed my case with others.  They all agreed that my next step should be a Brain MRI and PET scan.  I'm extremely high risk of reoccurence and because of the size of tumor 14mm Breslow depth and clarks level V the cancer could have spread to other areas via the blood vessels.  He said with a tumor this size it doesn't necessarily take the lymphatic channel.  He's also referring me to the Northern California Melanoma Center in San Francisco for a consultation on what kind of treatments I should have.  This will also depend on the MRI and PET scan.  So another week of waiting!!  How long does it take to get the results of these procedures? 

OH YEAH!  I asked for xanax and I got some.  I don't really notice the effects and today was the first day taking one.  If my headaches stop then they were definately due to stress. 


Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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NYKaren's picture
Replies 6
Last reply 7/4/2011 - 10:11pm

I've been having rather a rough time of it.   After developing diarhhea fairly early on (1 week after first infusion), Dr. Wolchuk put me on Entocort EC.  I had a gastric bypass roughly 4 years ago, and I think that made me susseptible to gastric side-effects.  He hadn't seen anyone present with diarhhea so early (shortly after 1st infusion).  After being on the bland diet and 8 days ago having a colonoscopy that did not indicate colitis, Dr. W. took me off the Entocort.  After the colonoscopy, I just kept going and going.  The prep was the harshest I've ever taken, and I was still going for days after.  I controlled it with Immodium**, then got constipated.  Of course, I should have called Dr. W., then, but did not.  I still thought I could manage on my own.

My bypass dr. was very concerned, so on Thurs. night (after my resuming the runs and having pain) he met me at the ER, and performed an exploratory laproscopy for suspected hernias, which was negative (but still necessitated an overnight in the hospital in addition to the surgery.)    I have an upper endoscopy scheduled for Thursday at 6:00 PM (my 3rd Ipi infusion is scheduled for that day as well.)

Today I spoke w/Dr. Wolchuk and he put me back on the Entocort.  We had a very frank discussion...he told me that if the diahhrea is not controlled after 2 days on the Entocort, they  might have to go to Prednisone, and if that doesn't work, to go off the Ipi.  Needless to say, that freaked me out.  the ** next to the Immodium is because he told me that Immodium is NOT the treatment indicated for Ipi diarhhea.  The steriod is.  He told me that they want to hear from me whenever ANY possible side-effect occurs.  They want to hear from me 3 times a day, every day, if necessary.

Dr. Wolchok was one of the pioneers of Ipi, and he has a "perfect track record of managing his patients' side-effects."  Meaning, he hasn't lost anyone yet, and he doesn't want me (or anyone else) to break that record.  Of course, that means stopping the Ipi if  he feels it's necessary.  

So far today, the Entocort seems to be working, so I'm praying it doesn't progress to needing Pred.  The good thing about Entocort is that it  works only on the gut and not systemically.  If I have to go on the Pred, then my whole immune system will be affected, and the Ipi works by BOOSTING  the immune system, so it makes sense that it would compromise the effects of the Ipi.  He did tell me that  he will continue the treatments if I have to remain on Entocort and it's working, so that was comforting.  As much as I like him is how much I just don't feel connected to one of his fellows, who always says "well, we'll have to see if you'll be able to continue the treatments..."   

Sorry if this is rambling, but I've been want to post for over a week--just been too scared & depressed.  So far, only other side-effect has been mild rash/itching. This isn't easy--I'm working full time.  I only took one day off after the surgery because I've taken so much time off already for the melanoma surgery/radiation/ipi.   So, I'm very much looking forward to this 3 day weekend of doing nothing but lounging around and reading.  A Sunday night movie, which my daughter just suggested, would be a high-point.

Hope everyone has a good weekend.


Don't Stop Believing

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boot2aboot's picture
Replies 11
Last reply 7/3/2011 - 11:35pm


i just finished my localized treatment protocol to my axilla lymph gland area...i had two reoccurances since april 2011when i was diagnosed as stage 3c...i had a ct yesterday and had planned on doing my adjuvent therapy right away and now i am sitting here waiting on pet scan to confirm lung /liver...what i need from this community is ideas for my next treatment you think i am nuts to consider dr wolchuk's phase one trial with ipi combos at sloan?  i know the mel i have is super aggressive...i haven't even begun any bio yet as the tumors keep popping up and the surgeons keep whacking...the onc is meeting with me later today to go over results and treatment options...i am good with treatment option for stage 3c if i am lucky today...but, stage 4 opens up a new pandora box and i will need help navigating...maybe micheal fl, charlie or valin could respond?


don't back up, don't back down

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ValinMtl's picture
Replies 12
Last reply 7/13/2011 - 6:08pm

I'm so excited that I'm jumping in the air (well as best I can with my bad leg).  NIH has accepted me for a clinical trial, I went down last week.  I passed their interview and now I will be going down for surgery next Thursday to remove that nasty left lymph node in left groin.  They will use the lymphocytes to grow more in the lab.  After healing and in a few weeks, I will have chemo and most likely full body irradiation to destroy immune system then they will add lymphocytes and IL-2.  Should over about a 3-week period.  I know it's tough and I am sure nervous but having failed ipi and reading Jimmy B. comments and many otehrs, I know it is the best way to go.  I have to get rid of all the sub-qs plus any other surprises that melanoma has waiting.  I am praying that the good Lord will help me slay the dragon.

A million thanks to Warren G. for his support!!!   Val, stage IV xx

Live Laugh Love Nothing is worth more than this day!

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JerryfromFauq's picture
Replies 11
Last reply 7/1/2011 - 10:08pm

On 6 June I  felt a tender lump back  of  my right nipple.  I had a CT and Oncologist visit alred scheduled for June 13th.  (How's that for timing?)  The lump showed on the CT and my Oncologist brought up my problem the next day at a Oncology team meeting .  My Melanooma Surgeon's nurse called me and set up an appointment for June 27th.I saw Dr Slingluff then and he agreed that he would remomve the tumor which in now about 1 inch across, as soon as he could find a open operating room on his schedule.  He had his operatimg schedule full up until the middle of August.  I'm not sure just what he did but his nurse emailed me (and another nurse phoned me) to say that he wou7ld operate on me on 6 July.  This is great because this allows my wife and I to be in Colorado again in mid/late August for the birth of Gramd kid # 15.  Thank You UVA!

   It was noted that If the melanoma has indeed gone from my rear endthru my left groin then thru my neck and to my right breast, that this would indeed be an unusual path for it to follow.  So here's hoping that it's not a cancerous growth in there!

I'm me, not a statistic. Praying to not be one for years yet.

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alicia's picture
Replies 6
Last reply 7/1/2011 - 1:23am

Hi everyone I went to Vandy this past Friday to a derm that specializes in patients with multiple primaries and genetic mutations. I have had 3 primary tumors (1) >2.3mm Clark IV stage 3 SN+ (2) 0.59mm Clark II (3) >2.3mm Clark IV stage 2. All 3 have been amelanotic. This new dr says I fall into a category of the unknown genetic mutations because all mutations are not known at this time and he has never had a patient present with all their mukt primaries amelanotic. He said I make him very nervous and he's concerned because these amelanotic tumors are hard to diagnose. Anyways he did two punch biopsies in my back near my most recent wide excision and he found two swollen lymph nodes in my right groin. I went to my oncologist who said she was concerned about progression of disease and ordered a PET scan which I got the results today from my online acess to my hospital chart. I haven't actually spoke to my dr about these results but from what I've read there was no convincing evidence of metastatic disease or uptake in these nodes. My question is does this mean cut and dry these nodes should be negative or do u think my onc will want a biopsy. She said if they are hot on pET she wanted to do ex idol al biopsy but she never said what to do if it was neg on PEt. Just wondering your thoughts and has anyone had a neg PET and nodes still positive on biopsy?

Thanks live u all


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Hi everyone a good friend of mine was diagnosed last year with stage 3a melanoma he decided not to do interferon did lymph node dissection and all nodes clean only micro amount in sentinel node. He has been getting CT chest every 3 months and it was clear in march. Just this past week he had a CT chest scan that revealed he has a 2.5th metastatic mass in his right lung. He is having PET scan and MRI head to make sure it's not anywhere else. Could any of u please tell me what the next steps usually are if this is the only metastaic lesion. Do they usually take a wedge segment out of the lung? And what treatments have u don't that has worked or responded to? Thanks so much!!!!!! It's crazy we both work together and have both been dealing with melanoma. He is 32 btw and I'm 29 diagnosed at age 24.

Alicia NED stage 3 with 3 primaries

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Anonymous's picture
Replies 2
Last reply 7/3/2011 - 2:39pm
Replies by: mother-to-be, SoCalDave

Hi Michelle,


I have read your posts & wondering how you are doing. I responded to one of your posts when you were looking for a doctor to see;

Re: Dr. ODay at Angeles Clinic? Has he left?Anonymous - (6/27/2011 - 11:18am)

I too had a bad experience with Dr. Jakowatz. I am seeing Dr Chmielowski at UCLA. I am very happy with him  and with UCLA's Jonsson Comprehensive Cancer Center. If interested, here is the appt 310 794-4955.


Did you find another doctorbat angles clinic orbUCLA?


Wishing you the best. Hope you post with update.



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gabsound's picture
Replies 2
Last reply 7/1/2011 - 3:45am
Replies by: JerryfromFauq, lhaley

Well, I will finally have surgery tomorrow to have the lumps in my leg removed. It seems like everything always takes forever. Hopefully will get results back for when I see surgeon the following week. Oncologist appt to follow the next day.

I've told both docs that I want the tumor tested if it's melanoma for genetics. They said they will, if its malignant. Of course that would mean another 1-2 weeks to get approval from insurance company and then I'm guessing another 3 weeks or so to get results back. Anybody know how long that takes? All this sitting and waiting seems endless. Hopefully no bad repercussions to the waiting if this does turn out to be a recurrance.

Good news for my sister. Breast cancer in only one breast.Pet scan negative except for activity in the one breast. Sentinel node results due any day and she will start chemo on  07/06. They think the tumor should respond well to chemo so it gets so small she will only need a lumpectomy. Yeah!

Hoping for a speedy recovery. Best wishes to all, I worry and pray for all of us.

Julie in Las Vegas

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StevenK's picture
Replies 4
Last reply 6/30/2011 - 7:18pm

Today it feels like there's swelling in my nodes on my jaw/neck near my WLE scar. My onc declared them normal just on Tuesday. Can't it happen that fast? I'm freaking out. I'm touching that area constantly. Can't help it. Am I making this happen? I thought I'd gotten past the fear, but now it's back. What a mess I am. Please give me courage, God!


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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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