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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swissie's picture
Replies 3
Last reply 12/3/2010 - 3:43am

I haven't really posted on this new forum, but now I need some help.

I was diagnosed with melanoma in September 2008 (1.4 mm), with a "negative" SNB. I found a macrometatastase in June 2009. Of the 12 nodes, 3 had cancer, one of which was outside of the node.

In September 2009 I started a double blind trial with ipilimumab (10 mg/kg), after my 4th infusion I had a colitis and knew I am in the ipi arm of the trial.
I had my 8th round of ipi two weeks ago!

Since I started I had headaches, itching, a funny Beau's line on my toe nales, a colitis (after 4th infusion; min grade 3), a rash  (a week BEFORE my 8th! infusion; min grade 3).
My doctor does not believe the rash was ipi related, but for me it looks exactly the same as some examples I saw in recent articles on CTLA-4 side effects.
Also I have a Barret Espohagus, which again is a coincidence according to my doctor (although I never experienced heartburn of reflux before my trial, and although anti-reflux medication doesn't seem to work).

At the moment, my biggest problem is exhaustion.

My first question is if there are others like me out there who had 8 rounds of ipi or more? How are you feeling? Any new side effects?

My second question is if I should quit the trial. It seems to be taking it's toll. Being exhausted all the time sucks big time. I was very tired from the beginning, but it's getting worse every round.
The extreme rash was only a week before my 8th infusion, so I seem to have late responses.

Any smart ideas?

Thanks,
Sabine
 

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James from Sydney's picture
Replies 9
Last reply 2/7/2014 - 12:29pm

For those of you with non Visceral Melanoma,  Provectus has started Compassionate Use of PV 10 here in Australia, it will be also available in the US soon. The previous Trials had success on a limited use basis which meant you could only have a number of injections on a certain amount of tumors only. This Compassionate use will be a lot more flexible. All the data from this will help set up the Protocol for Phase 3 Trals. I found this email for enquiries,  culpepper@pvct.com

best wishes

James

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/2/2010 - 1:45am
Replies by: LynnLuc, Anonymous, Rocklove, King

Anyone on the NCI Moffitt  Florida mdx-1106 trials??? Would appreciate any feedback. thanks chris

 

"Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy.

http://www.clinicaltrials.gov/ct2/show/NCT01176461?term=mdx-1106
http://www.clinicaltrials.gov/ct2/show/NCT01176474?term=mdx-1106

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claudia-uk's picture
Replies 1
Last reply 11/30/2010 - 8:58pm
Replies by: Linda/Kentucky

 

My husband got his test results back today. He has mucosal melanoma (sinus) with metastases in lungs and liver. He is negative for braf and c-kit. The doctor now suggests ABI-007 trial: Abraxane versus Dacarbazine. I can't really find any information besides the trial information. Is anyone on that trial? It doesn't sound very promising. I don't understand why I never read in forums about it. Please if, anyone is on that trial or knows more about it,. let me know!

http://clinicaltrials.gov/ct2/show/NCT00864253

 

Thanks

Claudia

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Sherron's picture
Replies 41
Last reply 12/4/2010 - 9:57am

He was the most wonderful loving man, Christian, father, husband, best friend, and soul mate a wife could ever want or wish for.  December 4th would have our been our 43rd anniversary. We went to Hospice yesterday afternoon...and by 1:10 am.  the angels took him to heaven, no more pain for him.  Something (God) woke me up 10 minutes before he passed.  What a blessing.  I will miss him so much, my heart is broken...but he is pain free, and Melanoma has him no more!! 

Take Care,

Sherron, wife to Jim FOREVER!

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davekarrie's picture
Replies 13
Last reply 12/2/2010 - 2:21am

I posted yesterday that they thought my lymph nodes were negative, but found out yesterday that they found melanoma cells in 1 lymph node on my right side, now they must go in and remove many more. Now I have to go back to mayo for more surgery, then what?  Just a rollercoaster ride that is tough, not to mention that we found out we are expecting and we are trying to buy/sell a house, what a crazy month it has been. I am young and healthy though so I know I will beat this.  Wanted to get advice for others with stage IIIa to see what treatments are available and/or useful. have read many things about inferon and the like.  Also, should they put me through  a PET scan and check LDH levels as I haven't had those yet. thanks for any input/advice.

Live life to the fullest and enjoy each day!

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davekarrie's picture
Replies 5
Last reply 12/14/2010 - 12:17am

I posted yesterday that they thought my lymph nodes were negative, but found out yesterday that they found melanoma cells in 1 lymph node on my right side, now they must go in and remove many more. Now I have to go back to mayo for more surgery, then what?  Just a rollercoaster ride that is tough, not to mention that we found out we are expecting and we are trying to buy/sell a house, what a crazy month it has been. I am young and healthy though so I know I will beat this.  Wanted to get advice for others with stage IIIa to see what treatments are available and/or useful. have read many things about inferon and the like.  Also, should they put me through  a PET scan and check LDH levels as I haven't had those yet. thanks for any input/advice.

Live life to the fullest and enjoy each day!

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I saw this article posted onthe  Dana Farber site today (DFCI.org)

11/29/10:

Researchers shine light on how some melanoma tumors evade drug treatment

Findings pinpoint a critical gene involved in melanoma growth and provide a framework for discovering ways to tackle cancer drug resistance

The past year has brought to light both the promise and the frustration of developing new drugs to treat melanoma, the most deadly form of skin cancer. Early clinical tests of a candidate drug aimed at a crucial cancer-causing gene revealed impressive results in patients whose cancers resisted all currently available treatments.

Unfortunately, those effects proved short-lived, as the tumors invariably returned a few months later, able to withstand the same drug to which they first succumbed. Adding to the disappointment, the reasons behind these relapses were unclear.

Now, a research team led by scientists at Dana-Farber Cancer Institute and the Broad Institute of Harvard and MIT has unearthed one of the key players behind such drug resistance.

Published in the November 25 issue of the journal Nature, the researchers pinpoint a novel cancer gene called COT (also known as MAP3K8), and uncover the signals it uses to drive melanoma. The research underscores the gene as a new potential drug target, and also lays the foundation for a generalized approach to identify the molecular underpinnings of drug resistance in many forms of cancer.

"In melanoma as well as several other cancers, there is a critical need to understand resistance mechanisms, which will enable us to be smarter up front in designing drugs that can yield more lasting clinical responses," said senior author Levi Garraway, MD, PhD, a medical oncologist and assistant professor at Dana-Farber and Harvard Medical School, and a senior associate member of the Broad Institute.

"Our work provides an unbiased method for approaching this problem not only for melanoma, but for any tumor type."

More than half of all melanoma tumors carry changes (called "mutations") in a critical gene called B-RAF. These changes not only alter the cells' genetic makeup, but also render them dependent on certain growth signals.

Recent tests of drugs that selectively exploit this dependency, known as RAF inhibitors, revealed that tumors are indeed susceptible to these inhibitors — at least initially. However, most tumors quickly evolve ways to resist the drug's effects.

To explore the basis of this drug resistance, Garraway and his colleagues applied a systematic approach involving hundreds of different proteins called kinases. They chose this class of proteins because of its critical roles in both normal and cancerous cell growth.

Garraway's team screened most of the known kinases in humans — roughly 600 in total — to pinpoint ones that enable drug-sensitive cells to become drug-resistant.

The approach was made possible by a resource created by scientists at the Broad Institute and the Center for Cancer Systems Biology at Dana-Farber, including Jesse Boehm, William Hahn, David Hill and Marc Vidal. The resource enables hundreds of proteins to be individually synthesized (or "expressed") in cells and studied in parallel.

From this work, the researchers identified several intriguing proteins, but one in particular stood out: a protein called COT (also known as MAP3K8). Remarkably, the function of this protein had not been previously implicated in human cancers.

Despite the novelty of the result, it was not entirely surprising, since COT is known to trigger the same types of signals within cells as B-RAF. (These signals act together in a cascade known as the MAP kinase pathway.)

While their initial findings were noteworthy, Garraway and his co-workers sought additional proof of the role of COT in melanoma drug resistance. They analyzed human cancer cells, searching for ones that exhibit B-RAF mutations as well as elevated COT levels.

The scientists successfully identified such "double positive" cells and further showed that the cells are indeed resistant to the effects of the RAF inhibitor.

"These were enticing results, but the gold standard for showing that something is truly relevant is to examine samples from melanoma patients," said Garraway.

Such samples can be hard to come by. They must be collected fresh from patients both before and after drug treatment. Moreover, these pre- and post- treatment samples should be isolated not just from the same patient but also from the same tumor.

Garraway and his colleagues were fortunate to obtain three such samples for analysis, thanks to their clinical collaborators led by Keith Flaherty and Jennifer Wargo at Massachusetts General Hospital.

In two out of three cases, COT gene levels became elevated following RAF inhibitor treatment or the development of drug resistance. In other cases, high levels of COT protein were evident in tissue from patients whose tumors returned or relapsed following drug treatment.

"Although we need to extend these results to larger numbers of samples, this is tantalizing clinical evidence that COT plays a role in at least some relapsing melanomas," added Garraway.

One of the critical applications of this work is to identify drugs that can be used to overcome RAF inhibitor resistance.

The findings of the Nature paper suggest that a combination of therapies directed against the MAP kinase pathway — the pathway in which both B-RAF and COT are known to act — could prove effective.

"We have no doubt that other resistance mechanisms are also going to be important in B-RAF mutant melanoma," said Garraway, "but by taking a systematic approach, we should be able to find them."

Media Contact

Robbin Ray
(617) 632-4090 

Luke 1:37

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Terra's picture
Replies 2
Last reply 11/30/2010 - 10:15am
Replies by: Linda/Kentucky, Fen

Hi,

I am hoping someone will have some advice about a 2nd surgery in Derek`s lungs and a possible spot on his bone. 

His PET/CT in the summer showed lots of uptake in a right hilar node that had lite up 2.5 years ago - so it is finally confirmed mel.  We have been on DTIC - 3 injections (randomized in the IL-21 vs DTIC trial in TO) - scan results sometime this week will tell us if DTIC has done anything - but a 3rd opinion from a surgeon says it is resectable with 5% possibility of complications because nodes might be attached to vessels and then a lung would have to be removed - however Derek has none of the predictors so we are thinking of having the surgery in January - thinking that is the best option - any advice...

Also, we are concerned about an unknown spot on his rib if it one day turns out to be melanoma (it lite up on the pet and ct but not on the bone scan or ultrasound), they do not know what it is but onc says it will probably in the long run be melanoma...anyone know what options we will have for the bone ie treatment, surgery...

I`m sorry for asking questions and yet not responding very much to others posts - I seem to have little energy between work, kids, and trips to TO, and Derek and I are having a difficult time together as well - I am sure this is not new to anyone here.  Thank-you for understanding.

Terra

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nicoli's picture
Replies 5
Last reply 12/7/2010 - 12:18am

I'm stage 3 and the onc is thinking of using radiation to kill mel cells that are left after  wide excision surgery of several months ago. We know there are remaining cells because 2 mets have recently been found in that same area, one rising up right under the graft skin! I have read that radiation isn't very effective against melanoma but can't seem to find facts or figures. Anyone here able to provide accurate information?

Nicki, stage 3b, dx 12/29/2009

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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nicoli's picture
Replies 4
Last reply 12/29/2010 - 10:42pm
Replies by: nicoli, truwill, bestday

Hi. I left this forum joyfully over the summer due to NED status and hoped to never return. But here I am again because we found 3 small lesions on my scalp. One turned out to be a cyst common to graft sites, one biopsied melanoma, and one is to be biopsied tomorrow. I freaked at first but I am okay now.  Still stage 3B as the lesions are very close to the original tumor site.

QUESTION: My onc is talking radiation to my scalp to try to kill cells. Of course, radiation most likely will not kill all the cells in that area and more surgery may be needed in the future if a recurrence occures again (that sounds funny LOL). My surgeon says if the scalp is radiated he can never again do surgery as the thin scalp skin will be too fried.  Anyone here ever run into this issue?

BTW, I really appreciated the Stage 4 Roll Call of the UnDead. It encouraged me so much.

Nicki, Stage 3B, Dx 12/29/2009,  Almost one year survivor!!

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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2atlascedars's picture
Replies 6
Last reply 11/30/2010 - 6:32am

Great news...my SNB results were negative (4 lymph nodes...all NED).

I still have to following up with my doctor for the formal staging decision, but I believe this puts me at Stage IIA...which was my greatest hope ever since my initial diagnosis on October 26th.

From the bottom of my heart, I want to thank everyone in the MRF Community that stepped in with their advice, support, encouragement, and prayers. I don't know how I could have gotten through this last month without every single one of you. I know I am not out of the woods yet, and I still need to have my heel reconstructive survery (delayed until 12/3), but this is as good a fighting start as I could have possibly hoped for...givien my initial ominous diagnosis ( Breslow's Depth 3.7mm, Clark's Level IV).

To everyone battling this beast...I wish for each and every one of you that you may awaken every morning with the strength and perseverence to give this fight your very best, and that you may find comfort and compassion when you need it most.

God bless,
Mark (Stage IIA) from California

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Melanoma Mom's picture
Replies 4
Last reply 11/30/2010 - 9:25am

Not sure if this is an "off topic" thing to post .... if so, sorry!

Got the great news this morning that Josiah has been chosen for a wish from Make A Wish! The wish hasn't been decided upon yet - he will soon meet with wish-makers that help the kids narrow down ideas. He is thinking about meeting President Obama! We are all so happy for him. cheeky

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NeilG's picture
Replies 4
Last reply 11/30/2010 - 9:04pm
Replies by: dian in spokane, Anonymous, makedoandmend

Recently had a recurrence on my back after being NED for 2+years. I was initially stage 3a and went through the year of interferon. Now I had an intransit metastasis under left shoulder blade. I had the surgery and am currently looking for adjuvant treatment. I am having problems finding clinical trials and debating on doing one. Has anyone w/ a intransit melanoma gone through a clinical trial and what are some good resources to find one. Thanks so much for the help, it is much needed.

God bless.

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We are putting together an educational piece for caregivers of melanoma patients and would like your feedback.  Whether you are a patient with some words of wisdom for caregivers, or a caregiver yourself, we'd like to hear from you.  What are some of the most important pieces of advice that you could give a caregiver?  What helped you?  What didn't help you?  Are there resources you know about or wish you had known about?  Etc...we really just want anything that you think could help another caregiver.

We will use this information in combination with a caregiver survey that was done by an outside company called Navigating Cancer.  They have been willing to share their results with us but we thought getting your opinion would be even more beneficial.  Thank you all in advance for your intuitive thoughts and opinions.  They are truly appreciated!   

Sincerely,

Shelby - MRF

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