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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WendyD.'s picture
Replies 4
Last reply 1/12/2014 - 12:39am
Replies by: WendyD., Janner, Bubbles

I finally got to see a dermatologists and got my skin checked. Well, once the derm seen all of my path reports she suggested that I might have to have MOHS Surgery because she felt my margins weren't big enough. My melanoma was quite thin and the intial biopsy itself had clear margins. Then I had my WLE done and it came back completely clear as well. Why in the world would I have to have MOHS done? Then while she was checking me she marked two more places on my back and done shave biopsies on them. Why would she do that knowing my history with melanoma? Shave biopsies can alter my results if it comes back as melanoma. Grrr!! Well, on another note I did request for them to get my slides and let a derm path look at my intial biopsy which they are going to do. I definitely wanted a second opinion on that. But from my knowledge unless these other biopsies come back melanoma they only want me to come back at 6 month intervals. Is that normal? Also I did finally convince my doctor to excise the abnormal lesion as well and I believe they said everything came back ok on that. I guess I'm just confused on everything. She don't think I need 3 month follow ups but I need MOHS surgery? Has anyone else had this to happen to them before? Also I know Clark's level isn't used a lot anymore, but I am kind of curious what mine was or do they even check that anymore? I know I read something about if it is level iv that AJJC will put it in their system just not on the actual path report. I don't know everything is so controversial on some of these sites you never know what to believe. I want my life back! I have read other people's stories how melanoma was all they thought about once they got their diagnosis, and I understand completely cause I have done the same. It's almost like I'm afraid to be happy because I feel like it could be short lived by a recurrence or by me finding out it had already spread without me knowing it. Oh and by the way every back pain, headache, or any other pain I have now is melanoma( not really but that's what comes to my mind now). Where before I would count these things as oh well I'm getting older and stiffer. Or wouldn't pay much mind to them. Now I'm thinking should I get an x-ray or something? Or just ignore it cause I couldn't handle the diagnosis anyway? When I first was diagnosed and realized the low risk lesion I had I was relieved and felt very optimistic. I mean 95% or higher survival seemed pretty good. But now my thinking has gone to what if I'm the 2-5% that becomes a statisic? Thanks for letting me vent, because I don't feel like I can do this with my family. I have to put a smile on my face as if this never happened and like I'm going to out live Methuselah (which was the oldest living man in the Bible for those who didn't know). Well, I guess I might need some sleep sometime today. Good Night For Now.

In God I Trustsmiley!

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Apologies if I am posting this twice - I don't see my earlier post and so am thinking I may not have done it correctly.

My husband had a melanoma on the bottom of his foot, mestases in lymph nodes, all removed in October. He was in screening for an interferon/ipi randomized trial, but a December PET showed more cancer. He's just had surgery for removal of expansive melanoma in the groin area as well as a new spot on his foot.  I'm not sure if he is still Stage III or is now considered Stage IV.

Our surgeon and local medical oncologist are referring us to a specialist at California Pacific Medical Center in San Francisco.  I can see that they have a clinic that is totally focused on melanoma - does that mean it is a Center of Excellence?

At this point, we don't know what our options are. Ipi looks like the best best (He was tested for BRAF but does not have the gene). But are hoping we are going to a true Center of Excellence and not sure how to determine that.  I see that UCSF also has a melanoma clinic in San Francisco.

We are in Sacramento, and with the problems of lymphedema we are trying to manage, at this point getting on an airplane is not a very viable option.

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ecc26's picture
Replies 16
Last reply 1/12/2014 - 1:40pm


It's been a while since I've posted but I've got a question or two.

After winning a fight wiht my insurance company about coverage I was denied access to a PD-1 trial in December because the researchers realized during prescreening that I had not tried the BRAF inhibitors yet. Not that it would have mattered- I would have been denied anyway because after successfully treating 7+ mets in my brain last summer with WBR there were 4 new ones found at prescreening- just about a month after a clean scan. Following denial of enterance to the trial I was placed on the BRAF/MEK combo and have been on those drugs for about a month, give or take.

I had a follow up MRI on Friday and my results appointment yesterday locally. Unfortunately the images from my December MRI did not upload into their system so we were not able to make an acurate comparison (and the written report does not give measurements), but based on what I saw on this new scan I very much expect I will be referred back to a center for either SRS or gamma knife. Hopefully they can get the computer guys on it and be able to more acurately compare the scans later this week, but in the mean time...

I know a little about the basic differences between the two methods of targeted radiation, but I guess I'm soliciting opinions about which may be the better choice and other's experiences with this therapy particularly regarding side effects. 



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lucy3's picture
Replies 2
Last reply 1/12/2014 - 7:56pm
Replies by: Anonymous, JerryfromFauq

Hello all.  Anyone out there have information of this trial offered at Vanderbilt and MSK?   I have appointment next week in New York.  Have been researching this as well as their trial using attenuated dendrite cells as a vaccine to be used intradermally.  I am stage 3 B and refused the interferon arm of interferon vs ipi in my local area.  Any info appreciated re both therapies would be appreciated.  Lucy3

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Michelem's picture
Replies 4
Last reply 1/12/2014 - 9:40pm
Replies by: Michelem, doro, Anonymous

My husband is being treated for Stage III melanoma in Sacramento, but our doctors here now feel we need to see specialists in San Francisco.  We may be referred to Dr. David Minor at California Pacific Medical Center, or possibly a Dr. Spittler with UCSF. I'm not sure how to determine who's the best, or if there is a particular person we should try to see . . .

Comments and insights on best options in Northern California much appreciated.

My husband has had surgers in October and again in January to remove a melanoma from the bottom of his foot, cancerous lymph nodes.  90 days after the first surgery, a PET scan found more cancer in the groin area, which proved to be more extensive than our surgeon had anticipated.  I have asked if we are now Stage III or IV, but our surgical oncologist said that is open to interpretation - just that it is time to see someone for whom melanoma is a specialty area.


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Pretty interesting article on some neat things going on in cancer research.  There's a lot of press on immunotherapy treatments but there's some other novel treatments such as anti-drug conjugate (ADC) and anti-cancer stem therapeutics (CSC) treatments that are starting to show promise as well.  Encouraging to see that there may be even more options in the future.


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JerryfromFauq's picture
Replies 1
Last reply 1/13/2014 - 1:12am
Replies by: JerryfromFauq

Why can I not paste in tshe body what I pasted in the Subject?????


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

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One might want to read the whole article.  MD Andeeron has written on the benefits of Curcumin.


One of the interesting findings:  
Curcumin Acts Synergistically With Chemotherapy and Radiation Therapy:

    Increases tumor cell sensitivity to chemotherapy and radiation therapy
    Protects normal tissues (liver, kidney, mucous membranes, heart, etc.) from radiation and chemotherapy injury
        One recent study demonstrated a significant reduction in radiation dermatitis (skin inflammation) in patients who received curcumin during their radiation therapy for breast cancer. Patients received either oral curcumin (2 gram tablets, taken 3 times per day) or a placebo. The authors reported that the patients taking the curcumin had dermatitis reactions that were on average 31% less than those taking placebo. One of the most impressive findings in this study was that the women taking curcumin had a marked reduction in their risk of developing severe skin reactions (called “moist desquamation”) compared with those taking the placebo; 28.6% (curcumin) versus 87.5% (placebo).

- See more at:

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

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Good morning,

The FDA just approved the first-ever combination therapy for advanced melanoma! The combination involves a MEK inhibitor, trametinib, and a BRAF inhibitor, dabrafenib. Both drugs (developed by GSK) were approved by the FDA in May 2013 for use as single therapies. The MRF issued a statement on the approval, which you can read here.

Lauren - MRF


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hannahcopeland1's picture
Replies 15
Last reply 1/13/2014 - 11:00am

Hello guys, 

From what I've read so far, the switch from Zelboraf to the new BRAF/MEK combo is a big improvement for people. It makes me really happy to see that and I'm hoping it will be a good thing for me.

I still want to know more though!

I started taking Zelboraf as part of a trial to combine it with IL-2 treatment. I since have opted out of the IL-2 for now and am investigating other options. Im still on Zelboraf and have been since November 4th, 2013. 

So far the Zelboraf has worked really well. We have seen a significant decrease in the size of my large lung tumor, which at the moment is the only location of melanoma that can be seen. Ideally it would keep shrinking until it was a size appropriate for a safe surgical removal, but we dont know if thats possible yet. 

Anyways, I have experienced a lot of the unpleasant side effects that come along with Zelboraf. I wasnt handling the full dose well, so my doctors reduced it to 6 pills/day which did help. I'm still dealing with sporadic and sometimes extreme joint pain, lumps under my skin, fatigue, now hair loss and the everlasting sun sensitivity. 

What I'd like to know a little more about are the side effects involving hair loss and sun sensitivity in the new combination.

I've heard it helps with alopecia and this excites me. I have a thick head of hair, but its thinning more and more each day. My eyebrows and eyelashes are very thin. I would love to save my hair if at all possible! Has anyone had success with this or had hair gain after switching?

The worst side effect for me is the sun sensitivity. Ive been this way about 3 months now and with the winter months it has been a little easier, but it wont be winter forever, and i love being outside. I have even been burned while being inside my house. Can anyone tell me if and how this improves with the combo? Does it completely get rid of it? Or just make is less? Or not at all? 

Thanks in advance for any and all responses!

Im hoping to do the switch within the next few weeks.



Hannah Copeland

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Anonymous's picture
Replies 4
Last reply 1/13/2014 - 11:15am
Replies by: Golda_, JerryfromFauq, Swanee, Anonymous

I have one box vemurafenib , my father is dead , pls contact me if you have a patient who needs it .

email :


you will pay for the shipping cost only .

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Janet Lee's picture
Replies 5
Last reply 1/13/2014 - 11:19am

I've seen a couple of posts recently about left-over melanoma drugs, as well as cautionary replies about scams, confidentiality, etc. I think this is a very valid topic, and would like to know if there are any "legitimate" ways to donate any of these expensive drugs to the melanoma patients who may be without insurance or are being denied the medicine for whatever reason.

Seems to me there should or could be some sort of clearing house to help others?

Janet Lee

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Swanee's picture
Replies 32
Last reply 1/13/2014 - 11:28am

Please join me in an old fashion bell ringing for our friend Denise, who lost her battle with melanoma cancer on January 6th.  

I joined this site 4 years ago and experienced this bell ringing whenever a member whom everyone knew, lost their battle with melanoma.  I don't know where, when or who started it, and I would love to know.  For all who regularly read and post, I think it's a nice way to honor our Friend and send her to the heavens with our bells of solidarity and our quest to keep fighting and find a cure to melanoma cancer..

So in honor of our Friend, Denise Kirley, please ring your bell in honor of her memory.

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hdelancey23's picture
Replies 23
Last reply 1/13/2014 - 2:44pm

January 6 2014 at 5:22 am my mom was called home to be an angel. She fought long and hard even in her last days. And now she is finally at peace. I am mad at her doctor because he went to the hospital two weeks earlier because she had a lot of pain in her back. She knew something was wrong and the doctor only did an x ray and said there was nothing there. It was probably just a pulled muscle. Well when she was admitted to the hospital for the last time they did a more invasive ct scan which hey should have done in the first place and found there was a tumor growing into her spine and bone. Thats what was causing so much pain. Would it have made a difference to do radiation on that tumor? I don't know the cancer was taking over by that point. It was in all of her organs and everywhere. In her last days she still wanted to know; what's next? What do we do now. At that point there really was no more options. She decided she wanted to donate her boy to science so even after her death she is wanting to fight this horrible stupid cancer. I pray that they can find out as much as possible from her body and maybe find a cure from her.

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Anonymous's picture
Replies 3
Last reply 1/13/2014 - 2:51pm
Replies by: POW, Anonymous

This is only available for two days, free full text.  I tried to save in pdf, won't work.  Saved to text file messes up the chart.  So, after two days, I can provide the text if the spam filter does not block it again.  Sorry, very frustrating.

It looks like it is very good info.

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