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 4
Last reply 1/14/2013 - 5:41pm

I am 62 year old healthy male. I was diagnosed with melanoma unknown primary late 2012. I had two tumors removed in small intestines in October2012. I still have small tumor remaining in right medial lobe. All CTs and MRIs have been clear of disease in other sites. BRAF and CKIT mutations negative. Dr. at MD Anderson is recommending Biochemotherapy and then mass removal. He has also discussed combo chemo and Yervoy as two other options. Doing any treatment before mass removal. MD at home insists mass one out first and then do Yervoy or another type of chemo.

Has anyone been in similar situation that could share experience? Anyone had any of treatment options in similar situation... experience?

trying to make right decision.

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JTiernan's picture
Replies 6
Last reply 1/14/2013 - 10:56am
Replies by: JTiernan, Frannie55, Josh

Has anyone ever had a melanoma mass in their knee?


Jean Tiernan

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Marcia1's picture
Replies 4
Last reply 1/13/2013 - 5:31pm
Replies by: Marcia1, meeshka6059, Janner

Has anyone had experience of an elder person taking Yervoy?  My mother had been taking Temador but her lung melanoma continued to grow so they stopped they.  She did tolerate the Temador fairly well.  I was just concerned with side effects as she was diagnosed last February with Stage IV Melanoma and hasn't really experienced any problems yet.  Thank you.

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sharmon's picture
Replies 3
Last reply 1/13/2013 - 1:42pm
Replies by: Owl, Anonymous, NYKaren

Hi,  Brent will be taking his 4th infusion of Mercks Anti pd 1 on the 16th  Wed,   We cannot see any evidence of tumor regression on his back where the biggest tumor is.  He has not been able to back off any of the pain meds he takes.  He is active, walking, shopping cooking, on a small scale.  My hope is that maybe it takes all four doses to get enough in there to start a response.  He gets scanned on the 6th of February and we will know for sure.  There just isn't a lot of information on how it works or how long it takes,  that is  reported anywhere that I can find to use as a marker.  I know everyone is different.  I know that the drug is new and I know that is new and different for everyone. 
As you all know the waiting is the worst and as of now I have no plan B and the time is slipping away.  I need to start trying to find out what to do next if this isn't working.  I have always had the research  and appointments for the next treatment lined up by now.  Should we think about trying IPI again?  redo the testing for a Braf mutation?  Try IL-2?  Go back to MeK if it is approved by then?  Use some radiation to ease the pain in the bone mets?   Our doctors so far have made it a point to let us know what he is on isn't working but have never had a plan B. That was left to uis to decide.  Thanks for reading.  Any suggestion or words of encouragement is alway warmly welcome.

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

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Replies by: lou2 A Melanoma Molecular Disease Model Smruti J Vidwans(1), Keith T Flaherty(2), David E Fisher(3), Jay M Tenenbaum(1), Michael D Travers(1,5) and Jeff Shrager(4,1). (1) CollabRx Inc. Palo Alto CA 94301, USA (2) Department of Dermatology, Cutaneous Biology Research Center, and Melanoma Program, Massachusetts General Hospital, Boston, MA 021114, USA, (3) Massachusetts General Hospital Cancer Center, Boston, MA 02114, (4) Symbolic Systems Program (Consulting) and Stanford University CA 94301 USA,(5) Current address: SRI International, Artificial Intelligence Department, Menlo Park CA 94025. Melanoma Chief Editors: David Fisher, MD, PhD, Keith Flaherty, MD Melanoma Area Editors: Marcus W. Bosenberg, MD, PhD, Jeffrey E. Gershenwald, MD, Meenhard Herlyn, DVM, DSc, Harriet Kluger, MD, Glenn Merlino, PhD, Katherine L. Nathanson, MD, David Polsky, MD, PhD, Victor Prieto, MD, PhD, FACP, Antoni Ribas, MD, Lynn M. Schuchter, MD Editor in Chief: George D Lundberg, MD Acknowledgements: ''We thank Prof. Boris Bastian and Prof. Stephen Hodi for overall guidance and for pointing us to key pathways and genetic tests and Dr. Gavin Gordon for his thoughtful comments and proof-reading of this document.'' Abstract Melanoma subtypes are defined based on the status of key melanoma genes, pathways, and their combinations. Each subtype is defined by one key oncogene/tumor suppressor (such as BRAF for subtypes 1.1 to 1.4 and c-KIT for subtype 2.1) either by itself or in combination with others that play a supportive role (such as PTEN, AKT and CDK4 in the case of subtypes 1.2, 1.3 and 1.4). The subtype table below is generally organized by order of importance of associated oncogene/tumor suppressor, prevalence and potential for therapeutic intervention. Some of the oncogenes that define subtypes are capable of serving as the dominant oncogene and putative point of intervention for therapy, whereas others play a supportive role and typically co-exist with the mutations outlined in the first table. There are, of course, melanomas that do not fit into the currently defined subtypes, as well as types that do fit into an established subtype but do not respond as predicted. This may necessitate splitting of that subtype. Click here to read the peer-reviewed Melanoma Model paper in PLoS One: Vidwans SJ, Flaherty KT, Fisher DE, Tenenbaum JM, Travers MD, et al. (2011) A Melanoma Molecular Disease Model. PLoS ONE 6(3): e18257. doi:10.1371/journal.pone.0018257 Table of contents: [click on a section below to read details about that subtype, including drugs, trials, and publications] Section (subtype) Description Immuno Treatable Disease Immuno Treatable Disease Subtype 1.1 Aberrations of the MAPK pathway Subtype 2.1 Aberrations of the c-KIT pathway Subtype 3.1 Aberrations of the GNAQ/GNA11 pathway Subtype 3.2 Aberrations of the GNAQ/GNA11 pathway Subtype 4.1 Aberrations of the NRAS pathway Zelboraf Refractory Aberrations of the MAPK pathway and/or AKT/PI3K pathway Most recent revision released on RELEASE-TTF-2012-12-13

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

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lou2's picture
Replies 6
Last reply 1/12/2013 - 1:28pm
Replies by: Janner, washoegal, POW, Anonymous, awillett1991

What does it cost and does insurance pay for it?  I found the Blue Cross of North Carolina policy online and it says only pay for later stages of melanoma.  Testing at earlier stages is considered investigational, so no pay.

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CLPrice31's picture
Replies 4
Last reply 1/12/2013 - 12:27am

Happy New Year, everyone! Stage III warrior here with a quick question. I am going through the maintence phase of the ipilimumab/placebo trial and just completed another treatment about a week ago. I've had this reaction before; however, it's a bit more intense this time and about 2 weeks early: Night sweats.

I wake up completely drenched yet shivering. I finally got up this morning and took my temperature: only 99.99! I just had my scans that showed no evidence of disease, just a cyst on my ovary that I will have an ultrasound on, but everything looks "unremarkable" and "unchanged."

Have you had this happen? According to Google, night sweats and low grade fevers are signs of the drug, but also signs of 100 other things including menopause! wink I'm only 25 so I definitely hope that's not the case!

Any advice/suggestions you can give me are greatly appreciated. I'm getting a bit tired of having to wash the sheets daily...

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy.

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mclaus23's picture
Replies 2
Last reply 1/11/2013 - 7:15pm
Replies by: TSchulz, LynnLuc

Hello, my dad concluded with IPI in 10/2011 and has since been showing regression followed by total remission 2 months ago. His scan today showed the 2 tumors in his adrenal glands grew by 1/2 inch and he has one new one on his lymph node near the adreanal gland. He needs to have an MRI asap which hopefullly shows nothing new. If it does not show anything new he is eligible for the PD1 trial. If not it's either IL-2 or IPI again. Has anyone been thru this:????

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awillett1991's picture
Replies 4
Last reply 1/11/2013 - 6:19pm

Found another article stating how they dosed in the study - 4 weeks on, then 2 weeks off Zel, then repeat. All mice dosed this way were alive at 100 days, all dosed continually were not. Definitely asking my doc about these Swiss mice next wk as he has been talking about dosing me on & off on a schedule. I tolerate Zel so poorly, I think the longest I have ever been on a constant dose was 4-5 weeks since last April anyway.

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LynnLuc's picture
Replies 4
Last reply 1/11/2013 - 12:23pm


Not too much new to update today.  Mom has responded slightly to the DEX, and has been able to get a word or two out.  However, there are no other encouraging signs.  Her IV was removed last night and they were not able to re-insert it.  All medications are now being given through shots.  Tomorrow morning will be her last shot of DEX and she will be moved to a local hospice house after that.  While she does seem to be in pain, she is handling it better than you would think.  She always has been a fighter...  I would expect nothing else.  
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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buffcody's picture
Replies 1
Last reply 1/11/2013 - 11:12am
Replies by: hbecker

When I was 15 I had a problem with inflammed lymph nodes in my right axilla. The decision was made to operate, because of possible cancer. When the operation was in process the surgeons decided to perform a radical lymphadenctomy because they believed that it was cancer. An analysis of the biopsy, however, did not show evidence of cancer. Later in the summer I had a lesion appear on my lip that was diagnosed as a granuloma pyogenicum. These are not easily distinguishable from amelanotic melanoma.  At 62, I was diagnosed with Stage II cancer of the breast, and, at 71, Stage IV melanoma, unknown primary, which had landed in my lung. 

 I had a nephew die of metastatic melanoma in 1997 at the age of 29. He also had a melanoma of unknown primary, which was caught for the first time in the left axillary area.  H, like me,  also had a radical lmphadenectomy and he was then diagnosed with Stage IV melanoma. I remember before he was diagnosed his showing me the area under his arm, and I encouraged him to see a doctor, while at the same time telling him that I suspected that he was probably dealing with the same thing I had at the age of 15. Interesting, too, was that the original diagnosis he got after his operation was lymphoma, which then got changed to melanoma. (My mother died of presumed lymphoma at 93, though the lymphoma was never biopsied.) He was 27 at the time of appearance.

My mother had stage 1 melanoma of the skin as did two of my first cousins on her side and an aunt same side died of pancreatic cancer. So a good case for familial melanoma.

But I wonder about the remote possibility that I originally had melanoma at 15, it receded and returned at age 71.  What about the biopsies that said I did not have cancer? I wonder how well the art and science of biopsy was developed in 1956, the year chemotherapy was first used, and whether, since the pathologist would probably never have been looking for a melanoma first appearing in the lymph nodes and the differential diagnosis of the granuloma and melanoma is even so difficult today, it could have been missed  With the family history, you can believe my wife and I were personally very cautious about the development of skin melanoma through the years and I had annual full body checks with a dermatologist.Nothing of any kind ever showed up before the Stage IV diagnosis.

 Speculation never to be confirmed and maybe there is good reason to think it's an impossible scenario I am painting.. I know it's all very unlikely, but could it be?

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Mickey n Jo's picture
Replies 13
Last reply 1/10/2013 - 5:15pm

Hi to all, sorry we haven't posted in quite awhile but things have been rather hectic here. My husbands most recent PET (12/13/12) showed mixed results with some decrease in some mets, but progression in some others. He is still on Zel, 3 pills morning and night. We tried to up the dosage to the full dose of 4 and 4, but he just can't tolerate that amount. He was also in the hospital for a few days due to a perforated bowel, which thank the Lord, healed over on it's own, because the surgeon didn't think he would be strong enough for an operation. Now the Drs. are suggesting Yervoy, in combination with a low dose of Zel, (2 and 2). I am so scared, because I thought that the combination of the two causes liver toxicity. We want to make the right choice, but what's right? As of now, the decision is to take another scan the beginning of Feb. and see what that shows, but if we wait too long things could get out of control since Yervoy takes time to show any benefit. Also, since Yervoy has colitis as a side effect, is it wise since he already had a perforated bowel, and an operation is not an option at this time? As our subject line stated, we are so confused, don't want to make the wrong choices. Any input would be very much appreciated. Oh, also, one of the Drs. mentioned to us that there is a possibility (not definite) that the BRAF/MEK combo might be approved for use in the next couple of months. Hope so, but don't believe it till I see it. Praying for everyone! Thanks.

                                                                                   Jo (Mickeys' wife)

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Has anyone had experience of an elder person taking Yervoy?  My mother had been taking Temador but her lung melanoma continued to grow so they stopped they.  She did tolerate the Temador fairly well.  I was just concerned with side effects as she was diagnosed last February with Stage IV Melanoma and hasn't really experienced any problems yet.  Thank you.

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