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 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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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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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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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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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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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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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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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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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 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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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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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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Anonymous's picture
Replies 3
Last reply 12/9/2013 - 12:13am
Replies by: hdelancey23, Janet Lee, POW

I have been away from MRF Board. I have been praying for Denise & her family. Anyone know how Denise is doing?

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Anonymous's picture
Replies 9
Last reply 12/4/2013 - 4:19pm
Replies by: Anonymous, Janner, jloz, POW, sbrooks90

I am ok with my diagnosis, its pretty good. I am at a .80mm depth, 2 mitotic rate, and no ulcerations, so I was listed as Stage 1b. I am to have the margins removed later this month (hello paying deductible and copay the last month of a year! haha) BUT, what I dont understand is why my Dr gave me the choice of having a SLN biopsy done, or not....

I guess I am thankful for the choice, but what kind of choice is this? Do you do it and know for sure you are clear (told its an 8% or less chance its spread to the lymph nodes) or not do it because its a longer and more expensive procedure with more recovery?  (are they both outpatient - with and without the SLN ? I know without is...)

Then, what if I didnt do it and should have?

Am I even making any sense with this???? I think I am leaning towards having it done just to be safe, but..... UGH




ps- I know there are people on here with way worse cases, but I just needed a place to vent where people understood what I am thinking. thanks

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