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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Hi all. I am wondering if anyone has heard of the term Post lymph node dissection pain syndrome? 

All the research i find is for breast cancer patients, but this research states that there are tons of people with this issue. Since my doctors are always trying to figure out why im still having such bad pain year after my surgeries, im thinking this could be a great topic at my next appointment. Just wanted to know if anyone else has heard of this or is experiencing severe chronic pain months or years after having their nodes removed. 





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Angela C's picture
Replies 13
Last reply 4/29/2012 - 11:30am

Hi everyone.

I got home yesterday after three weeks at NIH for IL-12 TIL treatment. Everything went really well. I had a week of chemo, followed by cell infusion then about two weeks in-patient while they monitored me for any side effects. I had a lot of fevers, some pretty high - 103-104. The doctors think things look good and they were able to see levels of IL-12 and interferons in my blood. My TIL cells were very active and grew extremely well in the lab. They are supposed to continue to multiply in my body and release IL-12 as they encounter Melanoma cells and kill them. I go back in about three weeks for my first follow up scans.

I'll let you guys know what scans show next month. I'm feeling very hopeful. They have seen results in almost all of the patients in the higher doses. I had one billion cells put back in my body. I'm in the 9th cohort out of 12.


Be kind, for everyone is fighting a great battle. -Plato

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triciad's picture
Replies 3
Last reply 4/26/2012 - 9:36am
Replies by: triciad, vivian, lhaley

I am really confused and need any help or guidance you can offer!

In July, I found an intransit close to my original tumor (buttocks).  I went to my dermatologist who tried to excise, but it was too deep.  She sent me directly to surgeon.  The piece she got out was biopsied and came back melanoma.  I had surgery and did 6 weeks of radiation.

A couple of weeks ago, I found a similar bump.  I went to my dermatologist who told me she spoke with my oncologist and he said not to biopsy, go and get PET.  I got the PET.  My oncologist's PA called me the next morning to report the PET showed absolutely nothing...probably fatty tissue.  I was in shock because it was right between my 2 previous melanomas and felt exactly like the one in July.  I thought something wasn't right, but the temporary elation was wonderful. 

I just happened to have my regular checkup with my oncologist that afternoon, so I still went to see him.  He looked at it and said, "It's definitely melanoma and set up surgery with the surgeon".  So I did, and I had the surgery.  Path came back...melanoma.

Naturally, I'm bewildered.  How could the PET not show anything (path report says specimen was 3 x 1.5 x 1.3 cm)?  In addition, if I didn't have my regular check up, I would be walking around with this melanoma growing and growing inside of me!

I'm wondering, what would you do?  Do I say something to my oncologist on Monday about the "all clear message"?  I used to have such faith in the PET scan findings, but now, I'm not so sure.  Also, I don't know if it's time to get a new doctor? 

PLEASE give me your advice...what would you do?

Thank you so much for all of your help.  I've said it before and I'll say it's my MPIP family who I trust!


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triciad's picture
Replies 2
Last reply 4/25/2012 - 4:20pm
Replies by: triciad, Janner

Hi Everyone,

Well, here's my history. 

7/09 - first diagnosed...SNB, WLE - 3 nodes positive...groin area

10/09-10/10 - Full year interferon

7/11 - Intransit...same to remove and 6 weeks radiation

4/12 - found another's next?

So, I just got a copy of the pathology report.  It says, "Recurrent malignant melanoma, mulitlpe foci, focally present at the inked edge of the specimen.  Lymphovascular invasion is present."

It doesn't have anything about mitotic rate.  Also, never had "lymphovascular invasion present" mentioned before.  Please let me know if you know what this means...the good, the bad, and the ugly.

Thanks so much for your help.  I have an appointment with my surgeon tomorrow and oncologist on Monday, but I'd like to have some questions lined up.

Keeping you all in my prayers!





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susanr's picture
Replies 4
Last reply 4/27/2012 - 8:00am
Replies by: susanr, hope4cure1, triciad

Hello everyone,

My brother just started Abraxane today.  He is currently Stage IV as of 2/12.  Had yervoy 12/11. after clear PET.  In Feb 2012 his PET lite up like a Christmas tree. Lung nodules, re-occuring Left pelvic mass---had radiation there but nothing, nodules in abdominal cavity along with a spot on right femur.  He has been on Temodor since 2/12 but after last PET 2 weeks ago they decided on Abraxane since no improvement and some enlargement.  Anyone been on Abraxane and Temodor combo.  Hope to hear some of you had good results.  It seems he has had no good news since being dx. 2  1/2 yrs ago. 

Only good thing we have had was that clear PET in Nov 2011 prior to the yervoy.  Also, He has a mass behind his left knee which has grown and now going to have radiation to help shrink so he can walk better.  He has had quite a few surgerys---skin graft on his foot where primary started.

I am probably not making much sense so If you need more info let me know in order to give me some help/advice.  i am in the medical field and unfortunately know how nasty this melanoma is and I am trying to be optimistic but it is very hard when you know the response rates are not great on how well melanoma responds to chemo.  This is my first time posting but have reviewed website for awhile and have to say everyone is great and amazing how supportive. 

Thank you Everyone!!!!!


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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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