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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Replies by: SABKLYN, NYKaren

With all the questions recently being posed regarding anti-PD1 I thought I would try to help answer some of them.  This morning I put together a basic report on anti-PD1...what it is, how you take it, side effects, well as a synopsis of two of the latest articles providing results of two recent anti-PD1 studies.  A look at 107 melanoma patients in one of the first anti-PD1 studies that treated 306 patients with a variety of cancers by Topalian, Sznol, et al.  And, another by Weber, giving the data on 90 patients in my sister study of unresected melanoma patients at Moffitt.  Hope it helps.  Here's the link:

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pgdness's picture
Replies 1
Last reply 4/6/2014 - 7:18pm
Replies by: Janner

Hi all,

I am in the process of awaiting results on a shave biopsy of a suspicious mole.  About a year or year and a half ago I noticed one that looked bigger than I was used to and looked darker too, almost black in spots.  I ignored it cause it still just seemed like a mole - looked round and only about 4mm in diameter.  Finally decided to do something about a few questionable skin areas after having my first baby this January.

When the P.A. did it on tuesday she shaved off two layers.  I looked under the bandaid about an hour later and saw streaks and dots of black still at the biopsy site!  Could this indicate melanoma?  She kept calling it an atypical mole and didn't really acknowledge the possibility of it being mel.  Is there any chance that this is just a deep atypical mole?

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laru's picture
Replies 3
Last reply 4/6/2014 - 1:19pm
Replies by: meg, laru, sweetaugust

Thank you to everyone providing their experiences on this site, it's been amazingly comforting and informative as I help my father combat this disease.

Has anyone had an experience with PD1 drugs where they has not been any progress during the first course of treatment (3 months) but then experienced later tumor reduction?

Thanks for any information you can provide.

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Tina D's picture
Replies 19
Last reply 4/6/2014 - 12:24pm
Replies by: meg, Anonymous, dellriol, Tina D, katie1, BrianP, casagrayson, jogo

Anyone have adrenal insufficiency due to treatments and if so, does your Doc give you a "stress dose" option for your prednisone? In times of added demands either physical or emotional . I am having extra fatigue, and am in the midst of some demanding stressors at the moment. Thyroid was also low again, so the dosage adjustment may take care of it, but if not, they told me we can discuss the prednisone next visit. Just wondering what others are doing. Thanks! I have been on 5 mg pred for long time, after pituitary inflammation brought on by ipi last year ( started on 60 and tapered to 5 eventually) I also have a history even prior to the ipi of likely being adrenal insufficient, always requiring Cortisol to keep any BP during and after surgeries.



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POW's picture
Replies 5
Last reply 4/6/2014 - 5:13am
Replies by: Anonymous, DZnDef

Catherine Poole of the Melanoma International Foundation just announced that the Merck MK3475 (anti-PD1) Expanded Access Program just opened at the Angeles Clinic and Steven O'Day's Hollywood Clinic. Hooray!!

She also said that Amplimmune is accruing patients for their anti-PD1 trial. See NCT02013804- PD1. No prior PD1, but other therapies prior ok

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Bruce Davis's picture
Replies 2
Last reply 4/6/2014 - 1:05am

Feel so fortunate just being able to get around and have a daily routine. 

My heart goes out to everyone fighting as I know I've had it very easy compaired to most! Been able to make it to work every day only due to the people I worked with being in worse shape than me. They didn't realize how much motovation I received from them as I was supposed to be motivating them to exercise.

About 60 days ago started feeling very fatigued,  With a difficult time writing and thinking. Went on vacation for a week, thought it would help. Never got any better. Ive had to stop working and take it easy for a while.

Just wanted to know if anyone else has had the same reaction?

Presently it's "Don't give up."

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Replies by: kccaddy23, Anonymous, Tim--MRF, Scuba Doc

We are desperate!  My brother has stage IV melanoma and was told there is nothing else they can do for him.  There is a drug (MK-3475) Anti-PD-1 inhibitor that is available for expanded access for compassionate use from Merck.  Since he had a seizure a couple of weeks ago and has new brain tumors they state he is not eligible. I’m hoping someone may know of a way to get an exception to the rule and get my brother access to this drug.  His doctor, Stephen Hodi from Dana Farber said Merck refused to allow him to receive the drug but would not put their refusal in writing.  We were told he only has weeks to live and that was last week so we are desperate for him to get this treatment.  We will sign anything releasing them of any liability if anything happens to him.  Please let me know if you have any suggestions or any other options you think we can try.  We are even open to anything at this point.  Thanks!!

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tcell's picture
Replies 7
Last reply 4/5/2014 - 9:36am
Replies by: BrianP, tcell, pigs_sty

Hi all,

I have been following this forum fo a few weeks now and find it very helpful and encouraging. I really admire people here and the strength they show in fighting melanoma or taking care of their loved ones.

I am 35 years old, husband and father of a daugher of 1 1/2 years and probably one of the few European members (it seems to me) of this forum.

I have had lots of moles and spots on my body all my life and was used to seeing a dermatologist on a regular basis to get all of them checked. Always tried to avoid to much exposure to direct sun, always used factor 50 sunscreen as I was very aware of my high risk

On January 29 of this year I went to our local university hospital's ER after one month of coughing and 2 nights of severe pain in my thorax. The x-ray showed liquid between my lungs and pleura, CT of the thorax showed something on my pleura, lungs and the top of the liver and adrenal glands as far as visible that according to the doc looked like metastasis of a malignant rumor.

I was admitted right away and 2 days later a biopsy was done and a drain put in to get rid of the liquid. The surgeon told me that it was obviously a malignant melanoma irght after the operation.

Long story short: Pathology report and PET scan revealed that I had stage IV melanoma with mets in lungs and liver, adrenal glands, pleura, abdominal membrane, hip bones and vertebra TH 10. Luckily nothing in the brain. Tumor is BRAF positive, C-Kit negative. Primary unkown.

I spent one month in hospital where in the beginning they were not so sure whether I would survive as my blood params were really bad and there were 3 big mets attacking my liver

Luckily they have a research group specialized in melanoma treatment taking part in a number of trials so I have a very competent team of specialists to take care of me.

I am now taking GSK's Tafinlar + Meikinist combo (the latter through the compassionate use program as apporval for Europe is pending). Judging from the rapid imporvement of my blood params they think that I respond really well to the meds. I have had not side effects at all and will pick up work again next week.

I know that this may only work well for a limited period of time but I am trying to focus on the present and to be happy with what I have.

Just here to say hello to verybody and tell you how much I appreciate the discussions in this forum and how much self-confidence they give me to be ready for my own fight! Looking forward to taking part!

// Chris


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KatB's picture
Replies 0

Hi All,

At our oncologist appointment March 20 we were told that my husband would need Gamma Knife treatment.  (His tumor was resected Feb 28th.)   We met with the radiation oncologist on Monday this week and found out that he would not be able to have the Gamma Knife.   The reason is that the "cavity" where his tumor was is 2" which is too big for Gamma.   They now recommend (5) TrueBeam treatments.  He is scheduled for simulation on Monday and to begin treatments on Wednesday.

I was wondering if anyone here had experience with TrueBeam?  How were the side effects? Was there anything about it you wish you had known ahead of time?  Any info is appreciated.

The good news is that the brain MRI that he had Monday showed no new tumors and no regrowth in the area of the original tumor.  

The MRI did reveal blood pooled in an area on his brain.  It is a concern that if the blood is leftover from the surgery and came from around the tumor that it could be sitting in a new place containing bad cells just waiting to grow.   Any thoughts on this?   I will also say that my husband fell from the bed in ICU less than 48 hours after surgery and hit his head on the side where the surgery was.  He was rushed to a CT scan and no issues were found but I still wonder if this could be what caused the blood.   We forgot to mention this to the radiation oncologist but we will be seeing him again Monday and will discuss it further then.  We are worried about that blood!


2008: Dx Stage 2 - 1.24mm, ulcerated, right arm. WLE, SNLB.

2014: Dx brain met - 3.1cm tumor resected 2/28/14.  TrueBeam treatments scheduled in April.


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Maureen038's picture
Replies 2
Last reply 4/4/2014 - 5:33pm
Replies by: Maureen038, tcell
starletwoman2007's picture
Replies 2
Last reply 4/4/2014 - 4:40pm

Can anyone tell me whether they have been taking pd1 drugs and how successful they have been?




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phtreehuggr's picture
Replies 3
Last reply 4/4/2014 - 3:55pm
Replies by: phtreehuggr, kathycmc, Anonymous

My mom had this done years ago and there was nothing found in the sampling of nodes they took. At the beginning of this year they found a golf ball sized tumor in her abdomen, and later other ones, regionally. The excuse for this is that there is an small error rate in the test.

WHAT? I understand nothing is perfect, but c'mon, that is a piss poor excuse. She went back for skin checks every 6 months following the SNLB and nothing was found. They never checked her glands. Had they done so, they would have felt that her glands in her pelvis were clearing swollen. She never noticed them until after the diagnosis, and then it became apparent to everyone that it was clearly more swollen that the nodes on the opposite side.

My initial thought was...why were they just doing skin checks and not scans? Of course, for the small number of people that experience was she has experienced, insurance agencies are not going to cover expensive testing like this just for 1-2% of people.

Following her diagnosis, she gets a PET scan. For which she is told is 97-98% effective in detecting melanomas. Wrong again. Her scan showed nothing other than the golf ball size mass in her abdomen...turns out there were several other, smaller (but not so small they shouldn't show up on a PET scan) areas that contained melanoma.

Are there no alternatives? Going forward, how is she suppsoe to know whether or not the melanoma has resurfaced?! I mean, really, I just don't get it.

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Anonymous's picture
Replies 2
Last reply 4/4/2014 - 3:23pm
Replies by: Mat, Bubbles


I have been diagnosed with stage IV melanoma with mets on liver / lungs, etc. 8 weeks ago and I am now taking GSK'S combo. The doctor said Ipi was not an option as it is not clear wether I would respond at all and if I did on time to survive. Initial response could take up to 4 months.

Now I am reading that there are patients for whom the combo still works fine after 3 years, for others it stopped working after 5 months. The abarage according to a trial being 10.5 months.

I also understand that after discontinuing the combo about 50% show a rapid progress of their desease, in 50% cancer growth seems to be stopped or very slow.

Now I am kind of worried that I might run into the same problem in a few months again (of course I am praying and hoping for the better outcome) that Ipi may be too slow to help!

I hope they extend compassionate care for PD1 to Europe soon so I have a chance.

Does any of you have any other ideas what could be possible options after BRAF / MEK? I also heard that there are trials of PD1 and / or Ipi together with BRAF / MEK or discontinuing BRAF / MEK rather during a time when it works well and switching to other drugs instead of waiting until the melanoma is already spreading again.

Does any of you have experience with such a situation and knows of any soutions? Is IL-2 still an option?

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Everymoment's picture
Replies 5
Last reply 4/4/2014 - 2:36pm
Replies by: tcell, Everymoment, kpcollins31, Anonymous, KMick

You know, I keep thinking there might be a time when every ache & pain doesn't bring me to my knees grappled with fear. My mind is my worst enemy. Once you have melanoma, it is part of your mindset. I realize that for my entire adult life, I live in this state if acute awareness that my body does not function like everyone else's. It's kind of sad:( I realize that I'm not like other people my age.

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