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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My husband is on ECOG 1609 trial 10mg Yervoy. Due to colitis he was pulled from any more Yervoy, however, he is now experiencing eye issues with elevated pressures in both eyes. Per the doc it May be the beginning stages of glaucoma. Unusual for his age. Has anyone else experienced eye issues as a side effect of Yervoy?

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Holy moley!

"All cancers are caused by somatic mutations; however, understanding of the biological processes generating these mutations is limited. The catalogue of somatic mutations from a cancer genome bears the signatures of the mutational processes that have been operative. Here we analysed 4,938,362 mutations from 7,042 cancers and extracted more than 20 distinct mutational signatures."

 

http://www.nature.com/nature/journal/vaop/ncurrent/full/nature12477.html...

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http://www.onclive.com/publications/obtn/2013/July-2013/ASCO-2013-Humani...

Published Online: Tuesday, August 13, 2013
Published Online: Tuesday, August 13, 2Just a good start. Working up on things but not near a magic shotgun yet. Still a long ways to go for most melanoma patients. Seen too many things that people jump on as cures over the past 10 years when they were just steps that may help some. 

Jimmy B (medical researcher) has been preaching this for years since he gained the NED status then figured out the T-cell development timing between his -"failed" Ipi trial that was followed by a standard HD IL-2 regime. I was sorry to see where they state that large tumor regressions were only observed in 31% of concurrently treated patients. I had hoped for higher since some trials have reported around 50% of participants had favorable results for the PD-1 alone. "Of importance was the observation that concurrent therapy was more active when compared with the agents given sequentially".

The way I read the article it certainly implies that all the participants in the 31% received both the Ipi and PD-1. Wish they had answered the PDL1 question. It is still under debate since the PD-1 also works in some people with no PDL1 expression

This is just a good step. Working up on things but not near a magic shotgun yet. Still a long ways to go for most melanoma patients. Seen too many things that people jump on as cures over the past 10 years when they were just steps that may help some, .

I was just surprised at the 31% response rate for trial participants. Do note that this was also for >80% reduction in tumor size. Too many details left out so far to know all I want to about it. Not sure just how these numbers relate to the 4-6% permanent CURE rate of IL-2 And 20-21% positive response rate from IL-2. Still a major numbers game for pharmaceuticals!

I was just referred to another study (2001) that is the first I've seen that ties IL-2 responsiveness to any particular type of Melanoma. 

http://jco.ascopubs.org/content/19/15/3477.full.pdf%20html#ref-8    ... says that "53.6% of patients with only subcutaneous and/or cutaneous metastases responded"  Only 12% of other melanomas reached the response abjective which was a 25% reduction is all tumors size.  Under the 2001 study I am not even considered a partial responder.  All the 49 bags of IKL-2 did for me was to kill my liver tumors aand stop all growth in my i nnumerabale lumg tumors for 20 months.  WHAT'S in a definitioin?

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

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Amanda's picture
Replies 9
Last reply 11/18/2013 - 11:03am

So my boyfriend Randy go the results of his 24 weeks scans and all his tumors continue to shrink, and nothing new!!  Also his vitiligo is showing up more. First his forearms, and now his shoulders have white patches, and the majority of his beard and mustache is white.  Hopefully Lambrolizumab will work so well for all of you as well.  Prayers to all.  

-Amanda-

"Give thanks in all circumstances"

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kathycmc's picture
Replies 4
Last reply 8/15/2013 - 12:13am

My daughter is stage IIIb.  Her last surgery was 1/31/13 to remove lymph nodes in the right side of her neck and she has been NED since.  She did complete 3 rounds of adjuvant biochemotherapy April 10th.  She had a PET scan at the end of April that was clear and a CT scan in July that was also clear.  Her oncologist (melanoma specialist) originally said she would alternate PET with CT scans every 3 months for 2 years but on her last appointment said she was changing the schedule to CT scan only every 6 months.  My daughter is 25 and this may have something to do with trying to decrease the amount of radiation over her lifetime.  I am hopeful this is good news but I wonder if decreasing the frequency of the scans is recommended.  Any thoughts?

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brooke's picture
Replies 7
Last reply 8/14/2013 - 9:34am
Replies by: POW, Anonymous, hbecker, JerryfromFauq, Janner

There have been so many of you who have supported me through the scare of my husband's recent diagnosis. As you may know, he is a patient at Kaiser Permanente in Colorado and they are not melanoma specialits. 

He had a WLE with sentinel node biopsy in early August. The report came back showing a Breslow depth of 1mm with a satellite lesion which categorized him as stage IIIb.

I requested a copy of the pathology report and 'googled' the pathologists who read his biopsy. It appeared it was read by one general pathologist and signed off by a cytopathologist.

I immediately reqeusted a second opinion by a dermatopathologist and pushed the issue. Somewhat reluctantly, they send the slides for a second opinion. Two weeks later, I still hadn't heard. In the mean time we had seen the oncologist, enrolled in a clinical trial and prepared for a long road with melanoma.

Just late last week, we got the call from the surgeon who was shocked. The new path report, read by not only one, but 4 dermatopathologists, indicated that the 'satellite lesion' was a benign nevi (normal mole), and the new Breslow depth was actually 0.6mm.

As you can imagine, the shock and excitement I experienced were beyond belief!  Both the surgeon and the oncologist had never seen this before. Of course, they are asking for a third opinion now or as the oncologist called it, a tie breaker.

We are remaining cautiously optimistic that he may only be Stage I.

I wanted to post this to urge everyone to get a copy of your pathology reports, be sure a dermatopathologist has read it and if not, insist that it is. It could be life changing! Also, as everyone else mentions, go to a melanoma center as well.

Thank you again everyone who helped me through this trying time. I know that we are more fortunate than many and I will forever be grateful to this board for all the support. 

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chalknpens's picture
Replies 4
Last reply 8/16/2013 - 11:58am

After much hesitation, I did go last week to have the Moh surgery on the squamous site on my chin. The little tiny spot required two Moh cuttings, and eventually a dozen sutures diagonally across the left front area of my chin. I had the sutures removed today, and will be seen again by the dermatologist in October. My jaw is now very bruised, and when asked at the post office by a friend, "What happened to you?" I told her that she ought to see the other guy. :-/

I am not perfect, but I am enough.

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/23/2013 - 3:24pm
Replies by: casagrayson, natasha

Hello,

My OB/Gyn is trying to convince me using Mirena (hormonal IUD that has progesterone) because of very heavy periods. I am not sure about it because of my Stage 1 diagnosis. Have anyone used it with mm diagnosis?

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Anonymous's picture
Anonymous
Replies 11
Last reply 8/14/2013 - 11:56pm
Replies by: bj63, Janner, DeniseK, POW, Anonymous, hbecker

I notice for whatever reason that some posts/questions get many many responses, while others get none or very little.  I can't figure out what the "pattern" is.  An interest-generating subject line?  Not posting anonymously? 

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MattF's picture
Replies 5
Last reply 8/15/2013 - 1:03am

So I was dx with Stage ! in Aug 2012 right side of head near earlobe.

WLE and SNB neg. 3 month checks with ultrasound and bloodwork all good. Last one was Early June 2013 at MD Anderson.

End of June 2013 I feel what feels like a little "pea" at the base of my right ear (about 1 inch south of my initial melanoma and just left of the scar for the SNB.

I just keep an eye on it as i am moving out of tx and back to ca. 

By mid July it is olive sized...just starting to be visable through the skin....

Early Aug I get set up with Dr Chmielowski at UCLA Oncology Center....it is jumbo olive sized...firm, fixed, oval (sort of), about 1 inch across and you can kind of grip it with your hands but it will not move.

Set for an ultrasound then if the radiologist sees fit a guided Fine Needle Biopsy on Wed. at this point it is easly seen through the skin.

I don't want to think dooms day but just want some thoughts...i'm about as prepared as i can be...

I saw the oncologist (specioalizes in melanoma)...he got my history...did an exam..felt the lump for less than 20 sec and imeediately started calling in his staff to get me set up with other things...Derm and Biopsy. Then he used the phrase "this moderately concerning"

5 days later I saw the Derm at UCLA...he got history checked my skin then he felt the lump for about 15 sec and immediately called in his staff to check on the biopsy sched and what was going on...then he checked to see if it was through the skin enough for him to try and punch it to get his own biopsy.

The derm was great he looked me in the eye and said you have a list of priorities for your health. it is 10 things. #1 through #10 is to biopsy and treat that firm, fixed, oval, lump at your primary site.

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Anonymous's picture
Anonymous
Replies 0

Hi,

I have been on Merck PD1 for over 1 yr. Over the last 5-6 month, my finger and toe nails are brittle and the outer layer flakes off. It is impossible to grow my nails. Does anyone know if brittle nails is a side effect of PD1? 

Thanks for your reply to my post.

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Pink's picture
Replies 3
Last reply 9/2/2013 - 9:41am
Replies by: Pink, Vermont_Donna

I went to Moffitt today and I have 8subQ nodules in my leg. Scans show it's no where else. I am scheduled for ILP on 9/5

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Jaryllane's picture
Replies 4
Last reply 9/27/2013 - 5:54am
Replies by: Edward N., Tamils, Tina D, BrianP

I will be having my third infusion of Lambrolizumab this week. I'm on the 10mg/kg dose every three weeks. So far the side effects have been mostly fatigue, dizziness, and itching.  But it is very unpredictable from one day to the next.  I'd love to hear from anyone else who is on this trial.  Do the side effects get better or worse after more infusions?

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Tim--MRF's picture
Replies 1
Last reply 8/12/2013 - 9:47pm
Replies by: POW

Vical announced today that Allovectin failed to reach its primary or secondary endpoints in their melanoma studies, and that they are halting the melanoma program:

http://www.vical.com/investors/news-releases/News-Release-Details/2013/Vical-Phase-3-Trial-of-AllovectinR-Fails-to-Meet-Efficacy-Endpoints/default.aspx

Allovectin is an example of intralesional therapy, in which a compound is injected into a lesion on the skin.  The idea is to kill the local tumor and to stimulate the immune system to attack other tumors throughout the body.  More broadly this is part of a search for an ideal immunotherapy approach that creates an immune response that only attacks tumors.  Other immunotherapy approachs--Interferon, IL-2, ipi, PD-1--all affect the immune system more broadly, either by boosting the immune system or by removing some of the natural braking of the system.

I know that hearing of another failed trial is always frustrating, but this news should be balanced by other studdies currently under way. T-Vex, for example, is showing some real promise in studies, and other companies are still exploring this kind of approach.

Today's update is another reminder that cancer drug development is never a smooth, linear process.  For melanoma it has often felt like we were taking one steop forward and two steps back.  Now that is definitely not the case, and we may even be in the three steps forward, one step back phase.

Tim--MRF

 

 

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DeniseK's picture
Replies 4
Last reply 8/14/2013 - 1:31pm
Replies by: DeniseK, Tina D, GAngel, POW

Wow, I must really be breaking ground here.  I went to look up what the side effects could be from combining Dabrafenib and Ipi and there are no results.  There is a clinical trial being conducted with this combo but no results posted because it's a fairly new trial.  I can tell you that I don't feel bad at all, matter of fact I feel good, no side effects to speak of and the tumor on my arm is getting smaller.  I did get sunburned on Saturday pretty bad but seemed to have just about healed this morning.  

Is anyone else taking Dabrafenib instead of Z and did you take Z first?  Just wondering if you can tell the difference. 

Today is a good day!  

All my best to you all

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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