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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On my 4th month of zelboraf and am experiencing increased pore gland swelling. Dermatologist recommending retin A. Can't seem to find information about possible drug interactions - concerned with strength of retin A and adding another medication. Any suggestions? Steve

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Replies by: momof2kids, kylez


Interview with Dr. Jim Allison of Sloan Kettering 


To Cure cancer, your immune system  must make memory cells that can distingush Melanoma cancer when and if you relaps. This done in at initial stage of T-cell Differentation and propagation. You must have the right Melieu (An environment or a setting )) in place. This can be done with Systematic Combinatorial Therapy.

Best regards,


Jimmy b

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Anonymous's picture
Replies 13
Last reply 5/7/2012 - 9:47pm
Replies by: Bob B., CLPrice31, Janner, Linny, natasha, Anonymous

We will be vacationing in Mexico, a beach vacation, for 14 days.  We are spending two days on a boat so will be very exposed to sun.  Would it be a good idea to get 10 minutes of sun a day before I go, so that my skin has a little natural protection?  I won't burn in 10 minutes, I will simply develop some protective color.  I had melanoma years ago, earliest stage.  I tried to find information on google but everything was conflicting. 

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Hypophysitis Induced by Monoclonal Antibodies to Cytotoxic T Lymphocyte Antigen 4: Challenges from a New Cause of a Rare Disease


Specific human monoclonal antibodies antagonize cytotoxic T-lymphocyte antigen 4 (anti–CTLA-4 mAbs), a negative regulator of the immune system, inducing unrestrained T-cell activation. In patients with advanced or metastatic melanoma, one of these agents, ipilimumab, produced considerable disease control rates and, for the first time, a clear improvement in overall survival outcomes. However, accumulating clinical experience with anti–CTLA-4 mAbs identified a novel syndrome of autoimmune and autoinflammatory side effects, designated as “immune-related adverse events,” including mainly rash, colitis, and hepatitis. Autoimmune hypophysitis has emerged as a distinctive side effect induced by anti–CTLA-4 mAbs. This condition may be life threatening because of adrenal insufficiency if not promptly recognized, but it may easily be diagnosed and treated if clinically suspected. Hypopituitarism caused by these agents is rarely reversible and prolonged or life-long substitutive hormonal treatment is often required. The precise mechanism of injury to the pituitary triggered by anti–CTLA-4 mAbs is yet to be fully elucidated. 

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Karin L's picture
Replies 2
Last reply 4/25/2012 - 12:35pm

One year after beginning HD IL2 the PET/CT showed all soft tissue disease resolved (numerous tumors in the groin lymph nodes and many in liver ) and all bone mets resolved.  Only issue was L5 area in spine.  Followed up with MRI of lumbar spine and it did show mel as well as a soft tissue mass close by encroaching on a nerve. 

I developed severe neuropathy ( believed to be a side affect from the IL2 treatment) in January.  It got progressively worse as time went on to not only affecting both hands and feet but I had numbness everywhere including my lips/teeth/ears...etc.  I couldn't feel my feet or hands whatsoever.  Treated with high dose steriods and tapered off for 15 days.  This was in mid March.  You could draw a line from my lower back down to my ankle with severe pain (not tolerable) right before beginning treatment....which was the nerve.  The steriod treatment helped immensely but the pain is still there (tolerable)  as well as some numbness in that leg only at this point.  This treatment was from my neurologist after various tests and consult with my oncologist.    Now we know that particular pain/nerve/lower back pain is from the mel.  Both were going on at the same time.

Met with my onc. yesterday for follow-up after the MRI.  My choices were 1. watch and wait with MRI in 8wks to see if my immune system will resolve this issue since it took care of everything else.  2. Radiation.  One in three chance it will either relieve the pain, relieve the pain and resolve the tumor, or do nothing.  3. Surgery which would be abdominal due to the location and while not risky, not without much recovery and chance of damaging the nerve. 

Meh.  At this point I chose to watch and wait.  Other than the pain which is a little above annoying and is relieved with low dose pain meds I feel great and I am told I look great.  Dr. feels why take chances if what is going on may actually be healing. 

Am I crazy?  I agree with make your decision and don't look back but if anyone has anything they would like to say PLEASE do so.  Many times the thought process kicks into a higher gear with others thoughts.  Are we missing something? 

This is crazy long so if you read it, thank you.  If you reply, even bigger thanks!


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Wilfred's picture
Replies 9
Last reply 4/28/2012 - 1:21am


Julie, and eveybody else, thanks for the comments on my post of March 20, 2012. It is important to me to have reasonable replies to my questions from people who have been there done that. I have been to see four doctors: Dr William Sharfman at Hopkins, Dr Anna Pavlick at NYUCC in NYC, Dr Lynn Schuchter at Abramson Cancer Cenetr at UPenn in Philadelphia and Dr Paul Chapman at MSKCC.  

Here are my thoughts; I am being honest, I am not here for brownie points, I am here for me and you: Sharfman is probably an excellent Oncologist but, for me, there was no fire in his belly. I got the impression he had been doing this gig for a long time and was going to play the same old tunes. Pavlick is a firecracker. She has a goal: she wants me to survive and play with my grandchildren. She said that if the trial she has going doesn't work in two months she would pull me out and do something else. She is interested in me, she is interested in my winning the fight with her help. Schuchter is a slightly more reserved Pavlick, but a strong person and great doctor. Now I had a real problem, I was a believer in both Dr Pavlick and Dr Schuchter: they were here for me, they wanted me to beat this thing. Then we met with Dr Chapman at MSKCC. MSKCC did not have a trial for which I would qualify and Dr Chapman was dream come true. He discussed my history in detai, he listened to my search for a trial and he examined me thouroughly. He said that I wouldn't go wrong with Dr Pavlick's BRAF/MEK trial. The next day I signed the consent form with NYUCC. The trial is with a combo of Zelboraf and an unapproved drug GDC0973. 

So... that's where we stand; in the past week I have had lots of tests and on Tuesday, May 1, I start the meds. The system/marketplace, whatever you want to call it is truly amazing. Within 45 days I have been able to meet with 4 of the top Melanoma Doctors in the US, and become a member of a very limited number of people privileged to join a trial with real possibilites of success. My family participated in the decision process and with lots of my friends will help me win this fight. Best wishes to you all, Wilfred

If you fight, you may lose, If you don’t fight, you will lose.

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NYKaren's picture
Replies 4
Last reply 4/24/2012 - 10:38pm
Replies by: Karin L, aldakota22, NYKaren

Maybe the 3rd time typing this will be the charm.

I had my 3rd infusion on Thursday, and right after that my diahrrea went from controlled by Budesonine to having to add a 2 week course of Prednisone, to yesterday landing in the hospital.  Long story short, after much Dilaudid, CT scan and IV stroids, I have colitis and am now on 60 mg. Pred. 2x/day in addition to the Budesonine. Tapering hasn't been discussed yet.  Fourth infusion might be postponed if I get it at all.  He did say that we were looking for an imminune response, and we definately got it. At least i have until week 16 to finish Yervoy, and 4th infusion is usually at week 10, so I have 6 weeks to get over this. Also really bland diet--that helps a lot.

I have stage IIIc unresectable mel.  The areas that have mets large enough to qualify me for the new cohort of the BMS trial are on site on my scalp that was originally irradiated.So they don't count.  From my scalp down  my neck are mel satellite mets,  but none of the "fresh" ones are big enough!  Frustrating unless next PET scan shows more mel, which wouldn't be so good either.   

So tomorrow I go back to Dr. Halpern so he can continue freezing and we will probably add aldera.  I am insisting that leave the two largest mets alone to see if they grow large enough for the trial.    Good news is that the tweezed eyebrows that are growing back in are white.  Dr. Wolchok is very happy about that.

I know I'm hanging my hat on a trial and that's pretty crazy.  I wonder if they continue to have good results on the Merck and BMS trias, how long it would take to get FDA approval?  Can any of the more experienced members here even hazard a guess?  A year, five, ten??

If you've gotten this far, thanks for reading.  any input appreciated.



Don't Stop Believing

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I just spent the whole day researching ways to convince my HMO, Northern Ca Kaiser, to pay for the testing, etc. associated with the Zelboraf/MEK Phase I trial I am trying to get into. I finally got some movement when my oncologist agreed to make the referral to UCSF. It still needs to go through the Outside Services review process, which occus at a local level.  What I needed was for a Kaiser doctor to initiate the referral and my oncologist was finally willing to do so. The factor that pushed him into changing his mind was the information that there were other Kaiser patients already enrolled in the study. I had to "encourage" someone at UCSF, where the study is taking place, to go through the files of the people currently enrolled to confirm that a Kaiser patient was amongst the enrollees. It was because of responses of people on this board, especially Harry, that I tried that strategy.

Thanks to all of you who gave me encouragement and advice. As Charlie noted, I can be persistent when I have to be but as many of you know taking on the "system" when you're cancer is progressing is a difficult task. The war is not yet won, since the Outside Service review physician can still refuse the request. I had already started a complaint process through the Health Plan administration, which I just put on hold. If I need to reactivate it I will. I burned up the phone lines and my internet connection this morning, but I was able to get movement so it was well worth it.

I think it is time for me to finally shower and get out of my bathrobe! Although maybe I will take a nap before that shower......


Eileen L

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alabama girl's picture
Replies 6
Last reply 4/28/2012 - 9:01am
Replies by: Doug-Pepper, Gene_S, Anonymous, NYKaren

I had stage lllA melanoma removed in November, 2011. This was right under the right breast. I was diagnosed in March, 2012 with breast cancer of the right breast. I am now having surgery on the left breast for another possible malignancy. I have to have CT scans every 3 mos for the melanoma and mammograms every 6 mos for the breast cancer. I happen to have the most aggressive breast cancer although it was caught early. I am hanging in there but it is very stressful to be going for tests on both every few months. Just wanted to vent. The incision for the breast cancer was in an area that had radiation from the melanoma and is not healing well and now surgery on the left. Just need to be encouraged.


Susan- Alabama girl

. Don't tell God how Big your storm is, Tell the storm how BIg your GOD is!

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Hi MPIP members,

A reporter fora majormagazine is developing an article about treatments for different cancers and she reached out to the Melanoma Research Foundation in hopes of speaking to a female melanoma survivor with a history of using Zelboraf. The reporter is hoping to speak to a woman in New York City and age 40 or above.

If you are interested in sharing your story, please complete this survey April30th.

Thank you to everyone within the MPIP community for your help in educating the public about melanoma! 

Shelby - MRF

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MeNDave's picture
Replies 8
Last reply 4/25/2012 - 12:48pm

I took Dave into Roswell yesterday due to the pain in his back that was not being managed by pain meds.  They admitted him, and did a brain mri as well as ct of abdomen/chest/pelvis.  Brain showed no bleeding, but possible swelling of the lining.  They did a lumbar punch to test his spinal fluid, which we haven't gotten the results of yet.  Floor doc says WBR if present. Steroids seem to help with the pain, and that worries me.

Kushalahni has already mentioned starting a chemo combo, and not IPI.  My question to all of you... which combo shows the best response?  We need to get this under control...

Much love to you all,


Don't ever, EVER, give up!

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yoopergirl's picture
Replies 10
Last reply 4/26/2012 - 5:49am

We traveled to Madison Wi to see my Oncologist, had blood work and then saw the doctor. He just asked how I was doing and then took a look at my arm and said that my lumps were getting bigger but nothing can be done now, he ordered a ct scan for June 4th to see if the Yervoy did any good even with just 3 treatments. I am having alot of itching so I asked about that and was told just keep using the cream that I get over the counter, I don't know was I expecting more from that visit? BTW my blood work was all good. So now it is a waiting game again. I should have asked him why they don't remove the tumors on my arm, so many questions and not getting all the answers. He is a specialist in Melanoma so I guess I just have to have faith in him. 

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Anonymous's picture
Replies 5
Last reply 4/25/2012 - 12:29pm
Replies by: Janner, Anonymous

I recently had two moles removed last week.  After reading over this forum, I went in and picked up copies of my pathology reports, which are not the best copies and I cannot read everything.  I  have a appointment this next week, but right, I am not sure how bad it is. I am just told I need an excision, and doc will discuss it next week at appt (doc is out of town this week).

1. junctional melonocytic nevus, architectural disorder and cytologic atypism of melanomcytes.  margins free of lesion.

2. Proliferation of severely atypical nevomelanocytes arranged in a few small nests but confined to the epidermis.  Significant atypia and nuclear pleomorphism with abundant plump cytoplasm.  Atyical cells are, focally, moving upward in pagetoid fashion.  Atypical nevomelanocystes extend to one laterla margin. The cells do not invade the dermis.  Reexcision recommended.

 HELP!  What does this mean?

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Just want to let you know my brain MRI from 11 weeks ago Proton treatment on two mets continues to show shrinkage. Other lesion in brain remain stable too. This is 4 weeks from first IPI reinduction. My blood is drawn each week and my liver numbers are very near to normal again. I continue with the 4 pills in the morning morning and 4 Zelboraf pills at night while continuing with the IPI infusions . I am a bit tired and bit unstable at times walking but all in all I feel good. I was really nervous about trying both Zelboraf and Yervoy simultaneously but so far it seems like it might have been the right decision for me. Next brain MRI not for 6 to 8 weeks unless something happens. Will update as new data becomes available, good or bad.
Thanks to all who contribute so much to this website.
Kathy D

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Greg - Kyles dad's picture
Replies 3
Last reply 4/24/2012 - 11:31am
Replies by: Becky, jag, Wilfred

A link to my son Kyle's activities after dx with stage IIIA in 2005; then progressed to stage IIIC in 2010.  He has moved on and hopefully can be an inspiration to some.

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