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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I am a Stage IV melaonoma survivor and melanoma activist. I have been invited to participate in the Patient-Centered Clinical Trial Summit at the Partnership in Clinical Trials Conference. This gives me a unique opportunity to present a patient perspective to key stakeholders in Pharma, the CRO industry and the regulatory community. I am looking for additional patient input concerning the design, conduct, financing and analysis of clinical trials as well as the regulatory process.

The entire Translational Research Model in the US and internationally is under scrutiny by groups at home and abroad. ( see for example: the Conference on Clinical Care Research sponsored by the Friends of Cancer Research in November of 2012). We are close to significant changes in how our FDA will regulate Breakthrough Therapies under PDFUA 5. However, the international picture is not as good: requirements for approval such as  endpoint selection, randomization, comparator arms, use of placebos, and etc. are all based on antiquated notions of what constiutes scientific proof. They treat all diseases alike, they were designed to evaluate synthetic chemical treatments. They do not recognize that critical diseases like metastatic melanoma require a different approach to clinical trials because too many people are dying and because new targeted and immunologic therapies may not yet cure but have higher response rates, more durable responses, more tolerability and more practical benefits than the Starndard of Care. With the globalization of the pharmeceutical marketplace and the globilization of clinical trials to reduce costs and problems of patient recruitment, the problem of  differential standards has been exacerbated. I intend to use as an example the recently announced BMS Phase 3 trial NCT01721772) of anti-PD-1 (BMS-036558). It is the breakthrough therapy that saved my life (Extended 1B Trial) and an excellent example of the need to change regulatory practices and trial design now. As I am fond of saying , we need anti-PD-1 and we need it now!  If we want participatory medicine, we must participate not only at the level of personal choice but at the policy level.

As I prepare my thoughts, I need to know yours. You may respond here or to me directly at if you desire your comments to be kept private.


Make it Happen

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Tritzy's picture
Replies 13
Last reply 1/25/2013 - 10:19pm
Replies by: Redhorse, audgator, Anonymous, Tritzy, Charlie S, POW

My boyfriend has just recently been diagnosed with melanoma. He hasn't actually been staged because we haven;t gotten the PET scan to see if it has spread but by the depth of the tumor from biposy the pathologist was fairly certian. From what they took it was 3mm deep but the tumor went deeper. This is scary. I have read alot and know how bad it might be. I was trying to keep this from him. He is sort of a hot head and I didn't want him to freak out and do drugs and drink like crazy. He is an ex-addict and an alcholic. Well lately he has been growing more and more impatiant. We haven;t gotten anymore treatment other than a biopsy because he has no insurance we have applied for PCIP and gotten approved but coverage doesn't start till febuary 1st. So he got an appointment with the county hospital through American Cancer Sociery. He thought he would get more answers but that isn't what happened. They told him what he already knew. This angered him which he has already been getting angrier and angerier. Then the other night awoke with terrible night sweats. This freaked him out so of course naturally he googled it. This told him how bad it probably is. The thing I have been holding from him in hopes that I can keep him happy for that much longer. He became very very angry, He says hurtful things to me and starts fights with others. I just don't know what to do. I feel so alone. I want to be there for him. I love him more than I ever thought I could love someone but being with someone that seemingly hates you and everything you do is really hard. I can't talk to my friends because our relationship hasn't been perfect and they just don't understand. They either say that its because of all the other things he does or that what we have just isn't love, people don't treat people they love that way. I just wanna yell at them. HE IS ANGRY BECAUSE HE IS PROBABLY DYING!!!!! HE TAKES IT OUT ON ME BECAUSE HE IS CLOSEST TO ME!!!! This is something I understand. I just don't know how to not involve my own emotions, To not get upset when he is angry at me. I just need someone impartial to talk to. Or advice.

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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karebear1905's picture
Replies 4
Last reply 1/25/2013 - 9:38pm

I just finished an ippi treatment for a clinically trial I am on. With stage 3, I am always worried about results. I had my CAT scan done also. The scans went smoothly but a doc who read the scan indicated I had a 4cm growth in my right abdominal. But my onc said he did not see anything in the scan and not to be worried. Should I be worried?

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jag's picture
Replies 6
Last reply 1/25/2013 - 5:10pm

I remember when I was first diagnosed reading about stage IV People who used Celebrex to keep their disease stable.  I was wondering if they are still alive.  Especially since a lot of people on here have been having trouble with pain management lately.

Insert Generic Inspirational Motto Here

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Hey People,

Just saw this article about how injections might soon be less poke-y. My first thought, bizarrely, was that I hoped to have cancer long enough to experience these awesome new injections. My second thought was that was first thought was way stupid and that I don't want any more cancer or injections, needle-free or otherwise. Still, this could be very helpful for those of us who are getting daily blood clot injections, and if they could manage to draw blood with them that would be pretty excellent as well. Anyway, here you go:

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Amanda's picture
Replies 3
Last reply 1/25/2013 - 2:28pm
Replies by: Owl, Amanda

So, my boyfriend has been trying to get into the Merk Pd-1 trial at UCLA , and were told once his scans were done, that the radiologist found something in the brain,and it needed to be compared to his previous mri's to make sure it wasn't something new.  It took two weeks to get them the disk and for them to compare.  

The doctor sent back an email saying the scans were compared and that if we could meet with him because ''We need to discuss the results and decide how to proceed.''

I'm very upset, since i was hoping for an all clear to start the it sounds like (to me) that it's not going to happen based on new brain lesions.  any opinions on the wording of his email?  Or are we probably disqualified?

I replied to the email asking straight out if we were disqualified, and i'm waiting on a response...

thanks- Amanda

"Give thanks in all circumstances"

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dflohr's picture
Replies 6
Last reply 1/25/2013 - 11:38am
Replies by: Ali, NancyGM, Marcia1, Anonymous, POW

Does anyone have any experience with this drug? Has it worked for you and did you have any side effects? My husband had Stevens Johnson from Zelboraf so cannot go back on that or Ippi. Are getting a second opinion today but doing research on my own there is not a lot available until debrafenib and trametinib are approved. Thanks for any help  you can give me.

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POW's picture
Replies 3
Last reply 1/25/2013 - 5:15am
Replies by: Owl, aldakota22, Linny

My, oh, my! What a wild ride this melanoma is!

After being admitted to hospice in-patient last week, my brother's condition has improved markedly due to dexamethazone treatment. Now he is too healthy for hospice and we are trying to find him a nursing home placement. Dexamethazone is not a cancer cure, of course, so this reprieve is temporary. But as Mark Twain said, reports of his death are greatly exaggerated at this time. The family is delighted with his improvement, but dreading the next set-back. My brother, on the other hand, is stil convinced that he can "beat the beast". What a crazy disease this is! 

If anyone is interested in this cargiver's feelings about this emotional rollercoaster, I did post about it on the Off-Topic forum. And so we continue the journey. I'll keep you posted about developments.

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vicuk's picture
Replies 7
Last reply 1/24/2013 - 10:18pm

Just to update you all on her latest scan. She's on the GSK Dabrafenib/Tranetenib trial. She was told 6 months ago that she had six months to live. This scan, so far, has been her biggest mentally as she was expecting the worst. Six months ago, she had tumours in her lungs and a big one on her hip. Last scan she was told lung tumours were immesurable and hip tumour had started to decay. This scan she's been told lung mets still immesurable and now hip tumour started to decrease in size. This was a fantastic result and also a massive hurdle for Helen to get over as she now knows that what they told her was wrong. It has given her hope. She looks fantastic, is working part time with me in school and part time on her family farm. She has absolutely no side effects on these drugs  except from slight photo sensitivity. It's unbelievable that she was told she would only have up to now. I think the point I'm trying to make is that there are remarkable drugs and developments afoot .

I read this forum daily and think of you all througout the day every day. I read this site for hope, inspiration and knowledge. I get it in buckets from you.

Kindest regards and very best wishes,


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Tufty7's picture
Replies 7
Last reply 1/24/2013 - 12:33pm
Replies by: Tufty7, Linny, CarolA

Hi there,

My husband has just had his drain removed after an ALND and is unsure whether he should continue his physio exercises whilst the hole is still open. He is worried that if he discontiues them his arm will seize up as he is experiencing what we believe to be axillary web syndrome which is quite painful. On the other side he is also worried that if he does them it will impede the healing process as the wound will keep reopening as he stretches. Help!!! Also if anyone has any tips for axillary web syndrome or cording that would be extremely helpful too. Thanks :-)

Today is someone's memory for tomorrow. Make it a good one.

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dflohr's picture
Replies 0

Does anyone have any experience with this drug? Has it worked for you and did you have any side effects? My husband had Stevens Johnson from Zelboraf so cannot go back on that or Ippi. Are getting a second opinion today but doing research on my own there is not a lot available until debrafenib and trametinib are approved. Thanks for any help  you can give me.

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Anonymous's picture
Replies 4
Last reply 1/24/2013 - 12:21am

BRAF Inhibition Is Associated With Enhanced Melanoma Antigen Expression and a More Favorable Tumor Microenvironment in Patients With Metastatic Melanoma


Clin Cancer Res. 2013 Jan 10;[Epub Ahead of Print], DT Frederick, A Piris, AP Cogdill, ZA Cooper, et al



In patients with metastatic melanoma treated with BRAF-targeted therapy, BRAF inhibition was associated with increased melanoma antigen expression, T-cell infiltrate, and T-cell cytotoxicity, along with decreased immunosuppressive cytokines, providing a more favorable tumor microenvironment.


OncologySTAT Editorial Team

BRAF inhibitors have produced impressive response rates in patients with metastatic melanoma, but early relapse is common. Immunotherapy agents have also been successful, and there is preclinical evidence of synergy between the two therapeutic approaches. Frederick et al evaluated the immune response to BRAF inhibition, alone or combined with MEK inhibition, in patients with metastatic melanoma.

A total of 16 patients with metastatic melanoma containing BRAFV600E received a BRAF inhibitor (vemurafenib) alone or a BRAF inhibitor plus a MEK inhibitor (dabrafenib plus trametinib). Tumor biopsies were performed before treatment, after 10 to 14 days of treatment, and at the time of progression.

BRAF inhibition was associated with increased melanoma antigen expression, with increases of 4.9-, 16.4-, 13.3-, and 14.1-fold in MART, TYRP-1, TYRP-2, and GP100, respectively. Melanoma antigen expression did not differ in biopsies from patients receiving a BRAF inhibitor alone or combined BRAF/MEK inhibition, except for TYRP-2, which was higher in the combination treatment patients. BRAF inhibition was also associated with significant increases in CD8+ T-cell infiltrate.

BRAF inhibition had significant effects on the tumor microenvironment. Immunosuppressive cytokines IL-6 and IL-8 decreased with BRAF inhibition, whereas markers of T-cell cytotoxicity increased. Of interest, markers of T-cell exhaustion (TIM3 and PD1) were also significantly increased with BRAF inhibition, as was expression of the immunosuppressive ligand PDL1.

Patients who progressed on therapy showed an increase in melanoma antigen expression and CD8+ T-cell infiltrate at the time of progression. Of the patients who progressed on BRAF monotherapy, 1 later received combined BRAF/MEK inhibitors. Tumor biopsy after treatment showed restoration of melanoma antigen expression and CD8+ T-cell infiltrate.

The study supports the hypothesis that combined BRAF-targeted therapy and immunotherapy may improve responses in patients with metastatic melanoma. BRAF inhibition enhanced the tumor microenvironment by increasing melanoma antigen expression and markers of T-cell cytotoxicity, while decreasing expression of immunosuppressive cytokines.

The immune response to BRAF inhibition may be limited, however, due to the paradoxical increases in exhaustion markers on T cells and in PDL1 seen in the current study. Further, melanoma antigen expression and CD8+ T-cell infiltrate were suppressed at the time of progression, suggesting reactivation of the MAPK pathway.

These findings suggest that successful combination therapy may require use of pro-immune cytokines, such as IL-2, and immune checkpoint blockade with agents that target CTLA-4, PD1, or PDL1 to augment the immune response to BRAF inhibition. Studies combining BRAF-targeted therapy and immunotherapy are currently underway.




This does not sound like good news.  But aren't people on this forum getting some good results with the braf inhibition?

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Anonymous's picture
Replies 3
Last reply 1/23/2013 - 9:49pm
Replies by: mclaus23

Has anyone heard from Lisa. She was scheduled for brain surgery a few weeks ago. I am concerned because she usually posts often.

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thrashter's picture
Replies 1
Last reply 1/23/2013 - 9:01pm
Replies by: NYKaren

finished 2nd round a week ago had PET on Monday. Now get results and 3rd round on 31st. 2nd round brought more sickness than first. Cant wait to see what 3rd round brings. I think the wait on results is tougher than the Bio. 

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