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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frankMill's picture
Replies 6
Last reply 2/2/2014 - 10:41pm

Hi Everybody,

I was diagnosed with Stage IV in August 2013.  We all remember that dark day of diagnosis and going through the denial, fear, anger, tears, prayers, and depression.  Almost every warrior on this forum knows what it feels like to face the possibility of an early death.  It's a terrifying, dark place that we all have to wrestle with when the doctor says "I have your biopsy and the results aren't good"

What got me through the darkness?  It certainly wasn't the surgeons or oncologist at the hospital that first treated me, they gave me little hope.  What made the difference for me were the warriors on this forum.  The fighters like you who have been diagnosed before me.  You gave me hope by giving me knowledge, support and best of all...the inspiration to fight hard and not give up  Your words and posts were bright pin-points of light at the end of a very dark tunnel.

Some of us never emerge out of the darkness after the diagnosis, they give up hope and don't seek out the information or contact the best possible specialists.  Fortunately, because of you, I did start learning about Mel and sought out the best specialist I could find.  Luckily, Dr. Weber at Moffitt was close by.

I've been in the GSK Mage 3 clinical trial since last October, getting the recMage vaccine plus the Poly ic:lc booster.  While the trial resuls weren't promising on the previous stage of the Mage trial, I'm hopeful that it will be a success in my trial (it's more genetically targeted).

The good news is that I am NED!!  But I know that I may not be cancer free, my body is fighting that battle every single minute. 

For those of you coming to this forum for the first time, you have come to the right place.  These melanoma fighters rock!! I have great respect and admiration for every one on this forum.

Thank you.

Frank

 

 

 

 

 

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Janet Lee's picture
Replies 9
Last reply 2/9/2014 - 7:30pm
Replies by: Swanee, MoCedar, POW, Janet Lee, Anonymous

My husband Don and I have participated in a couple of research interviews designed for metastatic melanoma patients and/or caregivers. This researcher recently reached out to us because his client is looking for in-person interviewees in the NYC area in February. He has about ten slots open. If anyone is interested, please let me know (email me at leejanet4550@gmail.com) and I'll send you the contact info. They usually pay a little honorarium and seem very reputable.

Janet Lee

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Anonymous's picture
Replies 4
Last reply 1/31/2014 - 2:10am
Replies by: JerryfromFauq, Anonymous, tschmith
 
 
Breath test may detect signs of lung cancer: Study
Healthday // Healthday

Examining breath samples from patients with suspicious growths might help determine who needs surgery.

By -- Robert Preidt
 

x-ray of a human lung (Medioimages | Photodisc)

(HealthDay News) -- A simple breath test might reveal if a person has early-stage lung cancer, according to a new study.

Researchers tested the exhaled breath of people with suspicious lung lesions that were detected on CT scans. The breath was tested for levels of four cancer-specific substances, called "carbonyls."

The breath samples were analyzed using a special device developed at the University of Louisville.

Having elevated levels of three of the four carbonyls was predictive of lung cancer in 95 percent of patients, while having normal levels of these substances was predictive of a noncancerous growth in 80 percent of patients, the researchers found.

Elevated carbonyl levels returned to normal after lung cancer patients had surgery to remove the cancer, according to the study, which was to be presented Tuesday at the Society of Thoracic Surgeons annual meeting in Orlando, Fla.

 

-------------------------------------------------------------------------------------------------------------------------

 

I am posting this article because melanoma can metastisize to the lungs.

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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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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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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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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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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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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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