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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hope4cure1's picture
Replies 3
Last reply 2/29/2012 - 12:56am

Hi everyone.  My husband's PET and CAT were still clear today. In January 2011, he had 4 mets to liver and 2 lymph nodes in his chest.  He started on a Carboplatin/Abraxane/Avastin combo.  He tolerated the treatments well.  In June, he stopped the Carbo due to an allergic reaction and continued with the Abraxane/Avastin.  In July and September his scans were clear.  He stopped  Abraxane in September and continued with Avastin as a maintenance drug.  Today's scans mark 7 months NED.     

I realize that chemo doesn't have a stellar response record.  However, I want to give a glimmer of hope to anyone whose doctor has suggested chemo as the next step.  Statistics only apply to where you fall within the numbers.  This was my husband's first line of treatment, after surgery to remove lung mets in late 2010.   He is BRAF negative, NRAS positive.

My hopes and prayers go out to all of you.  Now that melanoma is starting to take its rightful place in the spotlight, hopefully the cure is imminent.

Much love,



Become what you admire.

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boot2aboot's picture
Replies 12
Last reply 3/4/2012 - 12:22am


For all of us Braf + people we might soon one day be able to treat our mel like a chronic condition:



Vemurafenib resistance is characterized by a diminished apoptosis (programmed cancer cell death) response. According to the researchers, the balance between apoptosis and cell survival is regulated by a family of proteins. The survival of melanoma cells is controlled, in part, by an anti-apoptotic protein (Mcl-1) that is regulated by a particular kind of inhibitor.

Their current findings, tested in six different models of vemurafenib resistance and in both test tube studies and in melanoma patients, demonstrated an induced apoptosis response and tumor regression when the XL888 inhibitor restored the effectiveness of vemurafenib.

The study appeared in a recent issue of Clinical Cancer Research, a publication of the American Association for Cancer Research.

"The impressive clinical response of melanoma patients to vemurafenib has been limited by drug resistance, a considerable challenge for which no management strategies previously existed," said study co-author Keiran S. M. Smalley, Ph.D., of Moffitt's departments of Molecular Oncology and Cutaneous Oncology. "However, we have demonstrated for the first time that the heat shock protein-90 (HSP90) inhibitor XL888 overcomes resistance through a number of mechanisms."

The diversity of resistance mechanism has been expected to complicate the design of future clinical trials to prevent or treat resistance to inhibitors such as vemurafenib.

"That expectation led us to hypothesize that inhibitor resistance might best be managed through broadly targeted strategies that inhibit multiple pathways simultaneously," explained Smalley.

The HSP90 family was known to maintain cancer cells by regulating cancer cells, making it a good target for treatment. According to the authors, the combination of vemurafenib and XL888 overcame vemurafenib resistance by targeting HSP90 through multiple signaling pathways.

There was already evidence that HSP90 inhibitors could overcome multiple drug chemotherapy resistance mechanisms in a number of cancers, including non-small lung cancer and breast cancer. Because XL888 is a novel, orally available inhibitor of HSP90, the researchers hoped that it would arrest the cancer cell cycle in melanoma cell lines.

In their study, the inhibition of HSP90 led to the degradation of the anti-apoptopiuc Mcl-1 protein. The responses to XL888 were characterized as "highly durable with no resistant colonies emerging following four weeks of continuous drug treatment." In other studies not using XL888, resistant colonies "emerged in every case," they reported.

"We have shown for the first time that all of the signaling proteins implicated in vemurafenib resistance are 'clients' of HSP90 and that inhibition of HSP90 can restore sensitivity to vemurafenib," concluded Smalley and his colleagues. "Our study provides the rationale for the dual targeting of HSP90 with XL888 and vemurafenib in treating melanoma patients in order to limit or prevent chemotherapy resistance."

Provided by H. Lee Moffitt Cancer Center & Research Institute

don't back up, don't back down

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I really would like as many stage 3A friends on here as possible if you would please respond...   I find myself with all sorts of issues, questions, feelings, well, everything that sometimes I feel is either too heavy for earlier staged melanoma patients, or way too trivial for even more advanced staged patients...  please get together with me if you would...  if you were previously stage 3A and would like to share I would appreciate also.  Right now everything is so new to me...just need to express how I feel and don't want to offend anyone.


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I had a consult at NIH last week. They wanted to put me in the TIL plus TBI trial. I just found out that I don't qualify because of my prior radiation history. So, now I have to decide between doing the TIL + IL-12 trial at NIH or going to Moffitt or MD Anderson and doing their TIL protocol.

NIH wasn't sure if MD Anderson and Moffitt were getting the same results that they have been able to get with TIL. They had heard that they may be having trouble growing the TIL cells. Does anyone know anything about this??

I'm really not sure what to do. It's so hard to make these decisions sometimes.



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

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Just a very BIG thanks to your responses! I feel much more in control of my own destiny now, and that is solely from all your input! God bless! I'll probably drive you all nutty with my questions now :)

Positive energy and prayers to all!

I can do all things through Christ who strengthens me.

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Kimberly Duncan Watts's picture
Replies 5
Last reply 2/28/2012 - 1:27pm

Another question already! I was told I do not qualify for zelboraf because my BRAF gene is "abnormal". Again, that happen to anybody else?

I can do all things through Christ who strengthens me.

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Kimberly Duncan Watts's picture
Replies 8
Last reply 2/28/2012 - 1:18pm

I completed my 4th dose January 8. At my 2 wk follow up appt I was so anemic it required a double transfusion and I now am on an iron supplement. This happen to anyone else? Also, as I am the only IPI patient in my area (upstate NY) and only the 5th melanoma patient ever, my onc. Is flying blind, although he is meant to be in contact w the specialist at Roswell in Buffalo (who we spoke to this morning and for the second time, can't find that they have rec'd scans...) My first scans showed no disease in any organs, but he couldn't tell me if the lesions in my abdomen were even lesions anymore, maybe cysts, and they couldn't really read the bowel. I am rapidly losing confidence as I was diagnosed in 08 and have been thru Interferon as well as IL2 this past summer. Any advice will be greatly appreciated. I was originally told IPI was a "one-shot" deal and now I read of those of you that are rein ducted. HELP!!! I am beginning to feel these people are just not on top of my case. 53years old with 5children , 2 grandchildren and a new granddaughter literally any second now! I'm a fighter and NOT ready to pack it in!!!!

I can do all things through Christ who strengthens me.

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boot2aboot's picture
Replies 1
Last reply 2/27/2012 - 4:12pm


don't know about you, but a lot of these i have never heard of before...have to do my own research and thought it would be helpful to share.  i got this from the Aim
BRAF Inhibitors in Combination

There are several clinical trials looking at the combination of vemurafenib (Zelboraf) with the older and newer drugs. There will also be a trial testing dabrafenib in combination.


  • Vemurafenib + Ipilimumab (brand name Yervoy) is a combination of a targeted therapy and an immunotherapy in patients with the BRAF V600 mutation.


  • Vemurafenib + Bevacizumab (brand name Avastin) is a combination of a targeted therapy and an anti-angiogenic therapy.


  • Vemurafenib + BKM120 combines two targeted therapies. BKM120 is a targeted agent that inhibits a molecule called phosphatidylinositol 3-kinase (PI3K).


  • Dabrafenib + Trametinib combines a targeted therapy with a MEK inhibitor. The phase 2 study showed that the frequency of responses in the combination is similar to dabrafenib alone, but with the addition of trametinib these responses may be longer lasting with reduced side effects.  A study of dabrafenib plus trametinib versus dabrafenib plusplacebo is now in preparation.



MEK is a critical member of the MAPK pathway involved in growth and survival of cancer cells. 


  • Trametinib is a potent and highly selective inhibitor of MEK activation and kinase activity. It is now in a phase II clinical trial to investigate the objectiveresponse rate, safety, and pharmacokinetics in patients with the BRAF V600 mutation who were previously treated with a BRAF inhibitor.  


  • Selumetinib is given either as a single agent or in combination with MK-2206 (a new compound inhibiting another protein important for cancer growth called Akt). Currently the drug is being tested in melanoma patients with the BRAF V600 mutation whose disease has progressed after being treated with vemurafenib or dabrafenib.



Mutations in KIT are most frequently seen in certain melanoma subtypes, particularlyacral lentiginous melanoma (melanoma of the palms, soles, and nail beds), mucosal melanomas, as well as those melanomas associated with extensive sun damage. In those patients treatment with KIT inhibitors such as imatinib and sunitinib has been reported to be beneficial. 


  • Imatinib (brand name Gleevec) is approved for the treatment of chronic myeloid leukemia and Gastrointestinal Stromal Tumors (GIST). Tumor shrinkage has been reported in melanoma patients with KIT mutations and multiple Phase II trials are currently testing imatinib alone or in combination with chemotherapy for this group of patients. 


  • Nilotinib (brand name Tasigna) is approved for the treatment of chronic myeloid leukemia and is currently being tested in melanoma patients with KIT mutations.


  • Dasatinib (brand name Sprycel) is approved for chronic myeloid leukemia and is being tested in multiple Phase II trials for melanoma patients with KIT mutations. 


Other Targets with Potential in Melanoma

Several other pathways and targets are currently being explored in melanoma. The following is a list of some targets for which drugs are being tested in early phase clinical trials: CDK2, CDK4, and ERBB4.

don't back up, don't back down

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Lisa13's picture
Replies 2
Last reply 3/1/2012 - 5:55am

When I had my 28th week scan from ipi, they noticed I had marginal growth of my lung mets (1-2mm).  When my blood work was done at the end of January, my LDH was down 100 points (around 209) which is considered normal. How is this possible when my cancer has gotten a bit bigger but now my LDH is the lowest it's been since last November??   Half of me hopes that it's really inflammatio and the ipi is still working, but nobody even knows.

I just started ipi again last Friday, so let's hope this continues to work. I think there is a 30-40%,chance,  but I don't think anybody knows how well the reinduction works.  Luckily after a year, I still have lungs mets that are under 1cm and some that are just over 1cm. I also feel good knowing my absolute lymphocytes have been 1900 before I started my reinduction,  so I hope this means good things on my immune system and helps to keep the brain mets from coming back.


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

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Hi...seems there are several drugs approved for treatment of other cancers which are showing great promise in treatment of melanoma.  Is anyone aware of any of these drugs, had experience with them or investigating them?  For example, dasatinib (C-KIT inhibitor) has been approved for CML (leukemia) and is showing significant results in treatment of advanced melanoma. I am grateful for any feedback.

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Anonymous's picture
Replies 8
Last reply 2/27/2012 - 7:13pm

Hi all,

I'm 33 and have had 2 primary melanomas in the past 2.5 years, one stage 1A and one in situ. I have had two great dermatologists in different health systems both listed as melanoma centers of excellence - both of whom have left practice in Arizona for one reason or another.  I am now looking for a new team and am wondering - what training do I want my doc to have? Banner MD Anderson just opened here, but the docs listed on their website as their "melanoma specialists" were trained in hem/oncology, internal medicine and surgery. No mention of dermatology.  I assume training above and beyond what is offered in medical school is important - but maybe I'm wrong? What training is required for a good melanoma specalist? Has anyone been treated at the new AZ Banner/MD Anderson? I'd love to hear people's thoughts and experiences.

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aldakota22's picture
Replies 4
Last reply 2/27/2012 - 3:42pm

  Does anyone know of any drug trials using both new approved treatments of Zelborak & Yervoy. Was talk  late last year that such a combination was being considered for stage 4 patients. Have not seen or heard of any on going trails.

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  Does anyone know of any drug trials using both new approved treatments of Zelborak & Yervoy. Was talk  late last year that such a combination was being considered for stage 4 patients. Have not seen or heard of any on going trails.

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emmapeal's picture
Replies 2
Last reply 2/28/2012 - 7:08am
Replies by: MeNDave, runnergirl

Tari...happy 5th Angel Birthday...You are so loved....and so missed...

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beatricefromPARIS's picture
Replies 1
Last reply 2/25/2012 - 8:45pm
Replies by: FormerCaregiver


Is my hemoglobin recently rising from 10g/dl for over the last 2 years to 11.5g (nearly the 12g minimum level of ordinary women!) a good sign for my immunity?

Or is it good news for cancer cells also ie bad news for me?

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