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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bradcope1's picture
Replies 26
Last reply 12/11/2013 - 3:31am
Replies by: Kim K, Draino, bradcope1, awillett1991, POW, JoshF, Anonymous, Mat, Richard_K

My daughter is stage 4 and currently is enrolled in the phase 4 Zelboraf / IL-2 trial. Last week we were excited to receive confirmation that the single tumor in her lung is shrinking on the Zelboraf arm. After six months of coughing, Z stopped it in 2-3 weeks. We need the collective wisdom of this community now as we are getting cold feet about the IL-2 arm which is scheduled for the week before and the week after Christmas. On this site, I have heard IL-2 referred to as a last resort. I have also seen the 6% of full responders believing in it and the 94% that didn't respond calling the experience a nightmare. Her oncologist says it is the first resort, because of your age and good health. On paper the trial makes sense, as we know that the Zelboraf response is not durable and a combo approach is needed to keep it down. It is our understanding that surgery is an option for her, but her Oncs sold us on going the systemic route from the beginning. Not sure if another reputable melanoma clinic would necessarily agree. Any thoughts on this trial, or other directions with the newer drugs we should consider for the combo treatment? 

Thanks in advance. 

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Richard_K's picture
Replies 5
Last reply 12/7/2013 - 9:31pm

I continue to be on a bit of a rollercoaster with my liver: bilirubin – sometimes high, sometimes normal but today I start my 46th month on Zelboraf.

And a week ago today, I celebrated my birthday so in order to celebrate these two events, I decided to have a colonoscopy.  Results were two small polyps and diverticulitus.  I’ll need to wait two weeks for biopsy results.  (Ha, I’ll even give myself another present in a few weeks with another prostate biopsy to see what that cancer is up to.)

When I first met with the gastroenterologist, he was concerned about my melanoma, Zelboraf, and going ahead with a colonoscopy.  He went ahead and called Dr. Pavlick and her response was something like, “go for it, I expect him [me] to be at my [Dr. Pavlick’s] retirement”. 

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Anonymous's picture
Replies 2
Last reply 12/5/2013 - 9:53pm
Replies by: POW, Anonymous

Hello, I haven't been here in a while and when I tried to search for these people, I realized that searching under peoples previoius posts is no longer possible.  I hope I am not tearing open old wounds by asking if these guys are ok.

Any information would be greatly appreciated.

Thank you.

Insert Generic Inspirational Motto Here

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out4air's picture
Replies 1
Last reply 12/16/2013 - 8:38am
Replies by: Gene_S

My husband had been on Z from May through November when it stopped working.  We could tell because we started seeing growth on his scalp and new melanoma spots appearing.  Back to Moffitt/Tampa we went and the recommendation is to go off Z for two weeks to get it out of system before starting Yervoy (ipi).  His first Yervoy transfusion was 12/3 and so far he is doing very well.  Our oncologist said that if he experiences any side effects most likely they won't appear until about 2-4 weeks and we probably won't see any changes for a few weeks either.  She said that in fact sometimes it gets worse before it gets better.  All CT scans, PET scans and MRI's done indicate no internal cancer.  He is diagnosed with Stage III Metatastic Unresectable Scalp Melanoma.

Over the two weeks he was off Z the melanoma grew at a rapid rate on his scalp with many new spots appearing and ones that were already there growing.  My question is if and when the Yervoy begins working and the melanoma growth stops on his head what happens about the current spots that are there now?  Is it safe that they remain there as long as no new growth appears?

Our Oncologist did not indicate to us that we would see the spots compeltely disappear but is that possible?

Has anyone ever had similar experiences?  I would appreciate any information or advice thanks!

We are in it to win it!

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Anonymous's picture
Replies 1
Last reply 12/7/2013 - 9:31am
Replies by: Anonymous


MPIP recently added an anti-spam math question to the longin page. Anybody else notice that the questions seem to get more difficult each time you sign in? smiley

(Oh! Look! They put the emoticon icon back, too!)

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delora's picture
Replies 2
Last reply 12/6/2013 - 3:53pm

I had the scans today, PET and Brain MRI.  Originally, I was going to find out the results and talk about a plan on Tuesday, but the Doctor is now going to call me at home tomorrow with the results.  I'm glad to know what I am dealing with it, but hearing those results and waiting on those results......Well, you guys are the only one who understand what that means and feels like.

I appreciate the advice on doctors.  I have an appoint with Dr. Richard White it Charlotte, NC coming up.  I was wondering if anyone would be willing to talk about where they were when they got those results.  Is there anything that could make the situation easier?  I am planning on being alone for the call.  That's my choice.  I have only told one other person that it is happening tomorrow because up until yesterday, we all thought it was going to be Tuesday.

Thanks to all the people in this forum.  Its been a Godsend being able to come to this site.

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Maureen038's picture
Replies 2
Last reply 12/6/2013 - 3:13pm
Replies by: Maureen038, POW

My husband had TIL therapy at NIH last summer with 9 lung mets. He was considered stable, but because three lung mets grew a few mm he was taken off the trial. He is now finished his third infusion of the BMS ipi/ nivolumbab CA209-004 trial in Pittsburg. Last week his hemoglobin level went down to 7.2 and his LDH went to 1000. His LDH has always been low, usually under 200. He was given two units of blood last Wednesday. This week his level went to 6.2 and he tested positive for hemolytic anemia. He was put on steroids and was given two units of blood last night. We are waiting to hear results. His doctors have been very cautious, but I am very concerned how the steroids have effected the efficacy of the treatment. Also, will this condition take him off the trial?


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eerye70's picture
Replies 2
Last reply 12/6/2013 - 1:59pm
Replies by: Anonymous, mitchwendy

3 years ago November i was diagnosed with Melanoma in situ. Actually there was two differening opinions on my biopsy. One said severly atypical and the other said melanoma . I had the it removed with margins for worse case scenario.  Well. i go to the dermatologist every six months and its been fine. About two months ago i noticed a small pea size lump about 2 inches from the location of the mole of terror. I went to see my dermatologist and it was finally removed yesterday. Here is the thing, as i wait for biopsy results, i have had a headache every single day, for the past three weeks. Severe often debilitating headaches. I have a history of migraines and i just thought hooray me, my headaches have suddenly, inexplicably taken a turn for the God awful. I have missed several days of work when they happen, and they have woke me up from a dead sleep before. This is not normal for me. So my dermatologist is saying, we will get the biopsy results back and depending on that, we will schedule an mri etc and then make a referral up to Duke.

My question is he felt pretty sure it is melanoma, but won't know until the results come back. But what is the difference between micro mets and intransit mets? All this will impact my insurance being willing to pay for those tests and i need to be prepared to do my homework. My insurance company has a history of being difficult.

Also, given my symptoms, does it sound like brain mets? am i just making something out of nothing, i mean i know it isn't nothing, but it could be something other than brain tumor, but do you think its similiar to other experiences? I am trying to talk myself down off the ledge so to speak. But at the same time, i have many things to do, plans that are already in place for spring and i am a planner. If you could share some insight into the brain side and mets, i would really appreciate it.


Time to put on your big girl panties and deal with it!

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Anonymous's picture
Replies 4
Last reply 12/10/2013 - 10:58pm
Replies by: Michelem, jmmm, out4air

All, I had my first infusion of ipi on Monday--4 days ago.  Since then I've had a bit of stomach "churning" after meals, along with gasiness and a bloated feeling--often lasting for several hours.  So far, my bowel movement are normal.  Is all of this normal or a precursor to the tough GI issues I read about on this site?

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Scuba Doc's picture
Replies 8
Last reply 3/24/2014 - 4:20pm
Replies by: POW, Scuba Doc, BrianP

Anyone have any experience with the Novartis drug --LEE011 for CDK4/6 and any severe side effects.I am possibly starting a clinical trial next week----thanks in advance ----LindaG

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MattF's picture
Replies 1
Last reply 12/6/2013 - 8:37pm
Replies by: POW

Started Tafinlar today 6 Dec.

Will start Mek in 7 days in an effort to ease into it.

it took about two weeks but insurance finnaly figered it all out.

I'll keep you up to date.


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Anonymous's picture
Replies 1
Last reply 12/7/2013 - 9:22am
Replies by: Anonymous

Don't know for sure if this applies to melanoma, but can't see why it wouldn't.


Cancer Persister Cells

Similar to the obstacle in treatment of patients that develop resistance to antimicrobials, acquisition of resistance to anticancer drugs is a major problem in cancer therapy. Most treatments, even ones that work, fail over time because tumor cells become resistant. Different mechanisms of resistance have been described for cancer cells such as modification of drug target and active extrusion of drugs by efflux pumps and, therefore, it was largely assumed that random gene changes confer resistance to drugs [19]. However, this does not explain an increasingly observed phenomenon in cancer chemotherapy; “retreatment response” [20], [21]. In this model, it is proposed that once a small number of cells that survive exposure to drugs that killed the majority of the cells are given a “drug holiday,” they eventually regain their sensitivity to the drug [22]. These observations indicate that acquired resistance to cancer drugs may not necessarily result from stable genetic mutations but may also involve a reversible “drug-tolerant” state [22], [23].

from this article:

(Mostly about anti-microbials, but the above paragraph on cancer seemed very intriguing)

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ecc26's picture
Replies 8
Last reply 12/9/2013 - 8:18pm

Hi, everyone. 

I don't post or reply terribly often but I do follow this board daily and contribute where I feel I can help. I was a stage 3B in Jan 2011, that progressed to stage 4 in Nov 2012. I spent all of last winter getting IL2, which worked on the tumors I had then but shortly after my final course (less than a month) new tumors started sprouting in a very aggressive manor, including several in my brain. After being rejected from a PD-1 trial in June (due to the discovery of the brain mets) I spent the summer recieving WBR and Ipi (too many mets for gamma knife/srs). I had a mixed response in my body, but my brain mets were reduced to only 2 and were much smaller. Since I didn't have good control of all my tumors we decided to again try for a PD-1 trial in early November. We spent nearly the entire month of November arguing with the insurance company about whether or not they would cover the trial and finally got approval just before Thanksgiving and signed the consent literally the day the trial closed. This past week I went up for my pre-screening tests and was pulled out part way through because my specialist "forgot" that I was BRAF positive and hadn't tried the BRAF inhibitors yet, making me ineligible for the trial.

I was furious that he couldn't have figured this out earlier in the month so we could have been looking for a different trail, but as it turns out my MRI from the same day showed 4 new brain mets so I would have been disqualified anyway. I am now ineligible for any trails because of the new mets and my search for trials in NY, MA, and PA did not reveal any others I would have qualified for anyway, but I can't help but wonder if things hadn't been so screwed up in November if I might have been able to get into another trial somewhere (my MRI from the end of Oct was stable/shrinking). Oh well, nothing I can do about it now, doesn't mean I'm not frustrated.

So now I'm on debrafenib/trametinib (BRAF/MEK) that I just started last night. I'm nervous about being on these drugs, not so much because of side effects (although there's some dooseys in there) but more anxious about how well they'll work and for how long. I feel like I'm just waiting for the rug to be pulled out from under me again and then what am I going to do? I also hate that my poor husband is basically watching me get worse and worse despite all the treatments we try. At the moment I feel otherwise pretty good except for some intermittant back pain from the tumors around my kidneys. I lost my voice yesterday afternoon and I"m trying really hard not to read too much into that. 

I guess I'm just hopoing for some words of ecouragement and success stories. It gets harder and harder every time a therapy fails and this one makes me especially nervouse since there really isn't anything left for me right now. Any advice would be appreciated.



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Anonymous's picture
Replies 1
Last reply 12/7/2013 - 10:36pm
Replies by: Julie in SoCal


I have been thinking about you resuilts of your biopsy and wishing only good news.

Please keep us updated and we are allpraying for you.


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