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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Julie in SoCal's picture
Replies 2
Last reply 1/29/2014 - 10:48am
Replies by: Tina D, Anonymous

Hi friends,

just found out that a friend has been dx'd with Mel. I hate it when this happens!  He's near Springfield MO. Do you know on a good Mel dr near there?

thanks,

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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62 pages of interesting info.
These editorially curated reprint collections highlight a particular area of life science by bringing together primary and review articles from the Cell Press journal portfolio. In this selection, we present some of the recent advances in the field of biomarkers in cancer research from the bench to the bedside. We have chosen four articles, each paired with a related SnapShot, that capture the various uses and sources
from genomics to metabolomics and cell-surface markers.

http://d27vj430nutdmd.cloudfront.net/26199/174782/07bd1c8b0f4ad8f305d2fede2e09335c868a7632.17.pdf

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

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Anonymous's picture
Anonymous
Replies 7
Last reply 3/22/2014 - 4:51am

My Mom has had some good results with Yervoy and tonight we found out that she may not have her 3rd infusion, which is scheduled for this week.

She has had increasing issues with diarrhea with no stomach pain, chills...  Just a lot of diarrhea...  The doctor wants to look at her labs tomorrow, but it sounds like he wants to postphone or stop the Yervoy. 

Has anyone here been found to have colitis and then put on steroids before resuming Yervoy?  Or once the Yervoy was stopped was there no hope to try it again?  

The tumors on her neck and head have changed markedly and we are very concenred by this turn of events...

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Study Expands the Cancer Genomics Universe
Mon, 01/27/2014 - 1:36pm

 European Space Agency & NASA; Davide De Martin [ESA/Hubble] and Edward W. Olszewski [University of Arizona])Images like this one, taken by the Hubble Telescope, offer a snapshot of how vast and various the universe is. New studies in cancer genomics reveal that the universe of cancer mutations is much bigger than previously thought, and many key cancer genes still remain to be discovered. (Source: European Space Agency & NASA; Davide De Martin [ESA/Hubble] and Edward W. Olszewski [University of Arizona])A study across many cancer types reveals that the universe of cancer mutations is much bigger than previously thought. By analyzing the genomes of thousands of patients’ tumors, a Broad Institute-led research team has discovered many new cancer genes — expanding the list of known genes tied to these cancers by 25 percent. Moreover, the study shows that many key cancer genes still remain to be discovered. The team’s work, which lays a critical foundation for future cancer drug development, also shows that creating a comprehensive catalog of cancer genes for scores of cancer types is feasible with as few as 100,000 patient samples.

“For the first time, we know what it will take to draw the complete genomic picture of human cancer,” said Broad Institute founding director Eric Lander, a senior co-author of the paper. “That’s tremendously exciting, because the knowledge of genes and their pathways will highlight new, potential drug targets and help lead the way to effective combination therapy.”

Over the past 30 years, scientists had found evidence for about 135 genes that play causal roles in one or more of the 21 tumor types analyzed in the study. The new report not only confirms these genes, but, in one fell swoop, increases the catalog of cancer genes by one-quarter. It uncovers 33 genes with biological roles in cell death, cell growth, genome stability, immune evasion, as well as other processes. The researchers’ results appear in print in this week’s issue of Nature.

“One of the fundamental questions we need to ask ourselves is: Do we have a complete picture yet? Looking at cancer genomes tells us that the answer is no: there are more cancer genes out there to be discovered,” said the paper’s first author Mike Lawrence, a computational biologist at the Broad.

“We could tell that our current knowledge was incomplete because we discovered many new cancer genes,” said co-senior author Gad Getz director of the Broad Institute's Cancer Genome Computational Analysis group and a Broad associate member. Getz is also the director of the Bioinformatics Program at Massachusetts General Hospital Cancer Center and the department of pathology. “Moreover, we could tell that there are many genes still to be discovered by measuring how the number of gene discoveries grows as we increase the number of samples in our analysis. The curve is still going up!”

The researchers estimate that they will need to analyze, on average, about 2,000 samples of each cancer type in order to catalog the vast majority of these mutations – or about 100,000 samples across roughly 50 tumor types. “Given that there are around 32 million people living with cancer worldwide, this is a very reasonable number to study,” said Getz.

The tumor types analyzed included those in which lots of mutations occur – such as melanoma and forms of lung cancer – and those that have a much lower frequency of mutations – such as rhabdoid and medulloblastoma, both childhood cancers.

In total, the researchers analyzed the genomes of nearly 5,000 cancer samples, comparing them with matched samples from normal tissue. Using methods that the group has pioneered over the last few years, they rediscovered nearly all previously known cancer driver genes for these types of cancer, validating their approach.

The altered genes that the team has pinpointed will need to be followed up to determine which, if any, could be important targets for drug development. Initiatives at the Broad Institute like the Cancer Program’s Target Accelerator intend to do just that. In the meantime, the new work offers a wider view of the cancer genomics universe, and tantalizing clues about what remains to be discovered if more samples are analyzed.

Source: Broad Institute of MIT and Harvard

 

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

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NYKaren's picture
Replies 4
Last reply 1/28/2014 - 11:19am
Replies by: Anonymous, NYKaren, awillett1991

Hi all,

i was doing great after starting Tafinlar 6 months ago, now after about 1month on Mek, I feel like I'm getting worse. More mets on scalp and face. 

Going for brain MRI and check-up on 2/12--

.  I'll call Dr. Pavlick now, she said that sometimes the Mek makes the skin flare up before getting better, but I would have thought by now...

Thanks

Karen

Don't Stop Believing

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arthurjedi007's picture
Replies 4
Last reply 1/31/2014 - 2:36am

I was wondering if anyone has experienced a treatment path of Zelboraf then IPI then Tafinlar/Mekenist? Especially for those who took Zelboraf and it did not shrink anything and everything just increased.

I'm very concerned that if Zelboraf did not shrink anything then taking Tafinlar/Mekenist will not help and may even mess up IPI. I've also seen charts where if a Braf stops working changing to a different Braf does not seem to help much. But in my case Zel did not stop working it just never worked according to my Dr.

Currently I finished the regular IPI and get my 1st scan for it on Feb 3rd. I'm really hoping and praying this 1st scan the Dr said they don't put a lot of weight on is good. My Dr has not mentioned Tafinlar/Mekenist since starting IPI but before that he was all for it except at that time it had not been approved in combo. Thus he figured IPI was best for me. I know others have had great success with the Taf/Mek combo but I'm really concerned about that Zel, Ipi, Taf/Mek treatment path. I've never heard of anyone doing that path thus I'm posting this. The Dr did say if I increase on IPI he knows a trial where I can take PD1 (Nivo version) which I'm all for that if needed.

 

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G-Samsa's picture
Replies 4
Last reply 1/28/2014 - 12:56am
Replies by: Socks, Swanee, POW, Janner

Writing out of curiosity that was peaked by the How Long Will I Live piece in the NY Times this weekend, and shared with the forum by Mat.  I (and many on this board) have had a similar otherworldly experience with a sudden diagnosis.  Mine was exactly the same as in the article---meaning the Drs. I first saw told me that my metastatic disease was Lung Cancer.   The location of the tumors was also a match.  I was on a work assignment when I took ill -- and received this diagnosis in a Midwestern hospital after scans, x-rays, blood work, and exams.   When I returned home and my doctors back east reviewed the radiography -- the response was " this looks nothing like lung cancer". Melanoma was confirmed by additional scans and biopsy....  Anyway, I've always considered myself lucky that I did not live within the catchment area of that hospital-- who knows  when or if it would have been discovered that I was being treated incorrectly-- but I've never asked the question regarding diagnosis... Perhaps this was just off the spectrum incompetence.  Given melanoma's affinity for the lungs-- has anyone heard that misdiagnosis/treatment could be an issue?

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Vaccines Before Interleukin Treatment - May Boost Survival

People were far more likely to be alive at five years when given the vaccine before IL-2 treatment than when the order was reversed (46% vs. 14%, respectively).

Cancer Biotherapy & Radiopharmaceuticals | Jan 24, 2014
http://www.cancercommons.org/news/personalized-vaccines-may-boost-survival-after-interleukin-treatment/

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

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Lil0909's picture
Replies 6
Last reply 1/31/2014 - 12:17am
Replies by: Lil0909, Anonymous, Linny, bj63, gostan

Hi all!

I'm finally at the stage where I'm ready to meet with the medical oncologist.  My surgical oncologist, who I think is really great, has been handling my case so far.  I had a 1.25 mm mole on my arm, Clarks IV, 1/20 lymph nodes with a microsite, so Stage 3A.   Mole was on my arm for approx 5 - 8 years.

First, I know I'm incredibly lucky, if you ware going to be Stage 3, only 1 microsite in 1 lymph node is awesome.  But, I'm only 29; therefore, we would prefer to be more aggressive than just wait and see, if possible.

My finace and I live in Pittsburgh, PA.  However, we are not originally from here, and have quite a few other cities that we can travel to and potentially live for a few months or longer if needed.  My finace works for himself so we can be pretty flexible.  He is from Boston, so our original thought was Boston on Pittsburgh - but we are open to other suggestions if the treatment option fits. 

My surgical oncologist will set me up with a medical oncologist at either UPMC Hillman Center, or Allegheny General.  At a minimum I was planning on going to Boston for a 2nd Opinion before making any final decisions on treatment (i.e. interferon).

I have read / been advised by others that I should see Dr. John Kirkwood and/or Dr. Ahmad Tarhini at UMPC, but my dr mentioned that these may not be the best dr's for me b/c of personality differences - I think he alluded to the 2 recommendations being more straight shooters, which I'm not sure is a bad thing.

I would really appreciate any advise you all can give - but specifically Pittsburgh and Boston medical oncologist recommendations.

Thanks everyone!!!

 

Lilly

 

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Tina D's picture
Replies 3
Last reply 2/11/2014 - 3:23pm
Replies by: Tina D, Erinmay22, Anonymous

So, it is a minor question... but have any of you on PD1 had itchy sloughing skin on eyelids? I will be back at the Dr in a week, and will show them - but was wondering if anyone else has experienced anything like this? Both lids were lightly peeling last visit to Dr, and it is assumed this is part of the immune response to treatment. This has increased some, and now lids are a little puffy, though still not a big deal. I am just wondering if anyone has had something similar, and if so... was it treated?

Thanks!

Tina

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sjwilken's picture
Replies 8
Last reply 1/30/2014 - 10:22am

I had a second opinioin this past week.  I've been diagnosed Stage IV 4 M1.  Primary mole removed along with lymph nodes 5 yrs ago, followed by 1 yr interferon.  Found cyst on right calf and it came back as melanoma.  PET scan clear of major organs, but found something on my breast.  Getting that removed on Tuesday.

The new Dr. said, remove the tumor on the breast and you are in remission.  Does that make sense?  And no tx? 

My primary oncologist was confused bc usually metastasis usually go to the liver or lungs first.  Not the breast.  My primary oncologist isn't ruling out breast cancer. 

 

I'm just confused as to why the second opinion I got was NO TX.  I'm stage IV.  He said, just wait and watch me closely.  Is there nothing to do?

Where should I go?  I lIve in Illinois.  Please help me with any suggestions. 

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Mat's picture
Replies 8
Last reply 1/27/2014 - 4:52pm

My wonderful wife left a copy of this article out for me.  I haven't seen a better description of my day to day mental state.  Spoiler alert--the Samuel Beckett at the end (while simple) is priceless.

http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-lef...

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uhoh's picture
Replies 9
Last reply 7/3/2014 - 10:42pm

Hello,
My new PCP wants me to be seen asap for a suspicious melanoma and not even wait the usual 3-4 months for an appointment. I have had this lesion for years and I can't remember how or when it may have changed. Due to another cancer I have just completed treatment for, this PCP is not ignoring the potential for another cancer. The good news he said is that I've had this 'whatever it is' for years now (ignored several times by another Dr I showed it to), but we know now that I am one who already has had cancer. 

There is a near by plastic surgeon at a community hospital who has multiple openings in his schedule. I like community hospitals and docs. I also want the best diagnosis and treatment. I live a few minutes from an NCCN center where I already see a gyne oncologist.

So far I do not have confidence in the plastic surgeon I have an appointment with. Funny, that I had a choice of appointments for the following day and several other optins for the next few days is somehow not comforting. The plastic surgeon has not published in around 30 yrs and I know that should not indicate his skill and knowledge, but I can't find anything about this Dr except that he is licensed.

How important is it that I see a specialist for an initial consult? How important is it for a specialist to perform a biopsy, or excision? Is the Mohs procedure done on flat upper arm lesions? Would a Dr do a biopsy first and then decide on excision vs Mohs?

What are some questions I might ask during the first consult. I am not even sure if I'll keep the appointment or try to find another Dr. first.

Thanks.

 

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tschmith's picture
Replies 14
Last reply 9/5/2014 - 2:54am
Doubleexposure's picture
Replies 5
Last reply 2/2/2014 - 2:59pm

Hi i am a long time survivour stave 111, 18 years .....i just had a mammogram that came back funny, i am going again....but of course as u all know u jump to is is melanoma.......i am just wondering, if it is, has anyone had it spread there, ....what did you do......etc. etc. thanks so much.....

dianne

DIANNE BONNER

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