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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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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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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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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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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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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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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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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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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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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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

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Replies by: JerryfromFauq, dhrahn, Brent Morris, Anonymous, POW

My husband diagnosed stage 4 July 2012, started zelboraf with great results for about 11 months.  We were on board to start PD1 trial and he developed brain mets so we started ipi instead.  Just finished last infusion December 2013.  He didn't seem to respond well... or not yet.  We have looked everywhere for PD1 trial but everything seems to be closed or he doesn't qualify because of ipi.  

Dr. Hamid at the Angeles Clinic in Los Angeles has been awesome!  He found this trial for us and my husband should be starting no later than Febuary 10th.  Study drug MSB0010445 + up to three areas of radiation as well.  The study drug is" an immunocytokine consisting of a genetically modified , human monoclonal antibody fused to a genetically modified interleukin-2 (iL-2)"   

We haven't heard much about it but as you all know as options dwindle you take the best option presented. We seem to think the PD1 is going to be "the" drug of the century and we pray it is and we can get on it before it's too late.  

If anybody hears or decides to be part of this trial please stay in touch on here so we can compare stories..  

I love this site for how active everyone is with writing and sharing their story.  Thank you!

Holly

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Momrn5's picture
Replies 24
Last reply 1/31/2014 - 2:14am

Hi all....a couple of questions about my scans.  CT came back with two nodules in right lung base.  2mm and 3 mm.  Indeterminate in nature.  Left Kidney has lesion too small to measure.  Unable to r/o mets.  MRI of brain came back clear, but with " different uptake" over the entire skull.  And states to possibly do bone scan of skull to rule out bone mets.  The PA called me and said everything was "ok" and they want to rescan in 6 months.  She didn't mention a bone scan.  What is the opinion of waiting for six months to rescan?  And also, for being at a University hospital and Melanoma center, I was pretty disgusted with the results as no real dx. Was given. It just seems like they could have done a better job with scans? Or results?  Input welcomed.  

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Fen's picture
Replies 2
Last reply 1/29/2014 - 6:50pm
Replies by: Fen, jreed91

When I was diagnosed there wasn't a specialist in Iowa City.  Their website says there currently is one - a Dr. Milhem - but I have a vague memory that he also left.  My questions: Does u of i have a specialist?  Is he/she ok?  Is there a place in Chicago that would be good and relatively convenient?  We are about 2-3 hours south west of Chicago.   Thanks.

btw- this info is for a newcomer to the area and to melanoma.  It is so great to be able to direct her to this site with so many knowlegeable, helpful people.  

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jahendry12's picture
Replies 10
Last reply 1/31/2014 - 1:51pm

With my husband's 3 month scans coming up in 2 weeks, thought I'd share this article on 'Scanxiety.'  I can totally relate to this article.  I base my 'schedule' and future plans based on the 3 month scan cycle.

Julie

 

http://content.time.com/time/specials/packages/article/0,28804,2075133_2...

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AnnG's picture
Replies 8
Last reply 2/5/2014 - 7:09pm
Replies by: AnnG, dodgedh2, JerryfromFauq, Anonymous, hbecker, Swanee

I have a very unusal presentation--one Dr said he could count on one hand the number of patients he has seen. PLEASE reach out to me if you have had a similar diagnosis or are a professional and can offer advice.

July 2013 diagnosed with cyst on back. Insisted on seeing dermatologist again two weeks later. Attempt to drain found pigmented soft tissue so had punch biopsy. Path report metastatic malignant melanoma Stage 4. No primary site found. Pet/CT scan normal. Bloodwork normal. MRI of brain normal. Eye exam normal. Surgery August 2013. Unable to locate sentinel node. Clear margins. Melanoma deep (into dermis and hypodermis) All path reports have concurred metastatic except one Dr who believes this tumor was the primary. This changes the Staging. 

After surgery adjuvent therapy recommended as preventative. Interferon alpha 2b infusions 5x a week for 20 treatments. After two weeks, reduced dosage by 50% due to liver abnormailites. Then 6 weeks of self injections of Interferon-stopped due to recent problem.

Petscan last week showed a spot under arm same side of body as original tumor. Surgeon and oncologist are assuming it is melanoma in regional lymph node. Approx size 1/2 inch. No distant metastases.

Surgery scheduled for this Friday removal of lymph nodes under arm. 

Can anyone comment on my presentation? 

 

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