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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jolainajo's picture
Replies 2
Last reply 12/1/2010 - 12:39pm

Hi everyone,,,, I started my Ipi on Oct 29th, had my 2nd infusion  Nov 19th, I am feeling extremely tired, and it seems that one of my tumors on my leg, posterior, is getting huge, hurting, and it feels like a sunburn, not to mention, I had brain mets before I started Ipi and had gamma knife done, but I see this circle rainbow and it flashes and it comes and goes when I get hot, or exert myself too much. I have gained weight, and feel miserable. I need to know if all of this is normal. I am scared that the melanoma is just getting worse, especially since I feel this tumor constantly. I have other tumors that are subq too, but they dont seem to be feeling or getting large like the one on my leg. I need to know if any of you have had similar reactions, and possibly, need to know when you noticed reduction in size of the tumors if it is working, how far along in the treatment you noticed reduction. PLEASE respond, I need some answers. Thanks............... Jolaina

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Terra's picture
Replies 13
Last reply 11/30/2010 - 10:33pm
Replies by: Janner, simone, Anonymous, JohnHen, Ranisa, Jamietk, Terra, Lori C, Fen

Hi, I haven't posted or responded to any posts for a long time.  Derek has been on a trial since he progressed to stage IV, randomied into the chemo arm for a right hilar node.  We have been concerned about two spots on his ribs that are now nothing, although he tested negative for BRAF he is positive for NRAS, and a third opinion from a cardiothorastic surgeon saysthe node is resectable with 20% complications.  We also should find out whether the DTIC is doing anything in a week and a half.

I returned to teaching in September after mat leave with my second child. We have a 3 and half year old and an 18 month old.  I just found out I was pregnant again.  Not to be too speciifc but it is diifciutl to see hopw this happened, since the spring Derek has had surgery and treatment and nerve problems so there wasn't much chance to get pregnant and I was on the pill, but here we are. 

We are trying to decide what to do and I need some advice.  Derek has said he is not sure he can physically handle another baby and that emotional it is so difficult to look at the two we have now and know there is a very good chance he may not see them grow up let alone to rbing another into the world he may not know and of course we are both concerned, him more than me about how 1 parent can bring up 3 children.  Financially we are good, our parents live in town but are in thier 60s already.  I know this is our decision but I am having such difficulty and needed to hear what other patients and caregivers might have to say. 

 

\Thank-you for responding

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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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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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Sharon in Reno's picture
Replies 31
Last reply 11/30/2010 - 6:21pm

I'm not sure if I'm doing this right but I promised my sister that I would tell you what happened to her.I'm trying to keep that promise the best that I can..She signed on as Sharon in Reno.She told me that it was your love and support that kept her fighting.I went to stay w/her Aug.28th and she died Sept. 25th.I'm afraid to tell you how it went because there are many of you still fighting and many loved ones still hoping for NED.I will just say she was able to stay at home until 4 days before her death.I'm so thankful for hospice they kept me going and held me up when I thought I couldn't bare another moment.Sharon was 53 years old at her death and I'll be 55 this month.It was because of what we went through together that I now have made many changes in my life.She is at peace now.She left many people behind who are griefing but we are grateful not to watch her suffering any longer that was worse than the pain of not having her to hold anymore.She mostly wanted you to know how important she felt this web site was and thank you for the many times that you comforted her and advised her and gave her a safe,caring place to be when she just needed to "talk" with someone who understood what she was going through.I want to thank you also.Sincerely,Nina

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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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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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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Sherron's picture
Replies 17
Last reply 11/30/2010 - 9:02am

I can barely type these words...I am in shock.  this went so fast.  He still thinks we will go there and then go home...the ultimiate optomist.  I can't breathe, sleep, or anything.  Pray for me for strength...If you can believe this, he is pain free, only has awful bile that he throws up or they pull out, but no pain, just heart burn.  My heart is aching...43 years for us on Dec 4th....

Take Carem

Sherron, wife to Jim

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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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LynnLuc's picture
Replies 6
Last reply 11/29/2010 - 11:09pm

I am stage 4 NED...I was told I would always be considered stage 4 and would not regress to lesser stage...is that true- even though I have no disease at this point? I was told it's the distance it travels and not how "bad" you are...Just wondering...anyone know?? 

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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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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Doug-Pepper's picture
Replies 3
Last reply 11/29/2010 - 7:10pm

Thanks to everyone who takes the time to post their journey! I found this site several weeks ago. My husband (Doug) had a WLE on his back with clear margins. SNB came back with melanoma in one node. They removed the rest under his right arm. All clear. His Dr. suggested interfuron. He is sending us to Vanderbilt for a second opinion.  His pet scan & mri came back normal. We have heard that the side effects of the drug are horrible. We have started juicing in the mornings & have added several supplements, along with a much healthier diet. We are cutting out preservatives & trying to go more natural. Any advice on further treatments/ interfuron?  Thanks so much, Pepper

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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davekarrie's picture
Replies 7
Last reply 11/29/2010 - 3:12pm

Just got back from the Mayo clinic in Rochester, and I highly recommend Dr. Brewer (dermatologist) and Dr. Donahue (surgeon) for anyone in this area. I had a melonoma at 1.5mm and Clarks level 4 and just had the WLE and SNLB and intial results came back negative. The Dr. said more testing will be done early this week and hopefully that all comes back negative.  Does anyone know why an initial result could be negative and later tests positive. He had to take 3 lymph nodes under my right and left arms, and it is very painful but getting a bit better each day. hopefully we got it all and the care at the Mayo clinic I highly recommend. thanks and good luck to all.

Live life to the fullest and enjoy each day!

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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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http://www.environment.nsw.gov.au/radiation/radiationpubs.htm

 

I urge everyone who wants to see changes in their own indoor tanning laws to write in and support this initiative; I know from first hand experience that Australia is referenced when other areas are struggling to make changes. For example, in Canada, the federally funded Canadian Partnership Against Cancer recently commissioned a study titled The Economic Burden of Skin Cancer in Canada.  http://www.partnershipagainstcancer.ca/wp-content/uploads/Economic-Burden-of-Skin-Cancer-in-Canada-Report-Final1.pdf   In it the long established (and aggressive) Australian SunSmart program was used to calculate cost savings. The direct and indirect costs avoided during a twenty eight-year modelling period were estimated to be two point twelve billion dollars, or 7.8 times the cost of prevention.

For more than a decade the Canadian government has spent tax dollars educating school children about the dangers of ultra violet overexposure. When contacted, the Consumer and Clinical Radiation Protection Bureau advised me their Sunsmart program has sent out some eighteen thousand classroom kits and reached approximately five hundred and fifty thousand students over the years. Clearly education is not enough. It alone is not decreasing the health care burden. Nor the human carnage. It certainly didn’t keep my teens out of the salons; it took their mother's melanoma diagnosis to do that.  

This may sound like a rant and I guess it is, but I believe in putting this stuff here so others who come behind me looking to make changes might find a little extra ammo:) 

thanks, linda (our politicians in Victoria BC vote on tanning bylaws Dec 8th!!) 

 

Proposed amendments to the Radiation Control Regulation 2003

The New South Wales Government proposes amendments to the Radiation Control Regulation 2003 to strengthen existing controls on the use of ultraviolet tanning units and mitigate the harmful effects associated with the use of commercial UV tanning units used for cosmetic purposes.

The Regulation currently prohibits the use of commercial cosmetic UV tanning units by persons under the age of 18 years and by persons with Skin Photo Type 1, and contains other rules for persons who carry on solaria businesses and persons who operate tanning units.

The Government proposes to strengthen the Regulation by:

  • increasing the minimum age at which a person may be allowed to use a commercial cosmetic UV tanning unit to 25 (from 1 April 2011)
  • extending the range of persons excluded from using a tanning unit from persons with Skin Photo Type 1 up to Skin Photo Type 2 (from 1 April 2011)
  • increasing the minimum age at which a person may be allowed to use a commercial cosmetic UV tanning unit to 30 years (from 1 August 2011).

Announcement by Minister for Climate Change and the Environment.

DECCW is seeking your comments on the proposal.

Please provide any written comments by 21 January 2011 to:
Manager Hazardous Materials and Radiation
Department of Environment, Climate Change and Water
PO Box A290
SYDNEY SOUTH NSW 1232

or email to: radiation@environment.nsw.gov.au

 

All feedback received will be considered and taken into account in the review process. If you have any enquiries regarding the proposal, please contact the radiation line at DECCW on (02) 9995 5959.

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