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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Anonymous's picture
Anonymous
Replies 6
Last reply 1/15/2013 - 4:14pm

Anyone on the pd1 drug & also got a flu shot??? Any side effects??

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lou2's picture
Replies 6
Last reply 1/12/2013 - 1:28pm
Replies by: Janner, washoegal, POW, Anonymous, awillett1991

What does it cost and does insurance pay for it?  I found the Blue Cross of North Carolina policy online and it says only pay for later stages of melanoma.  Testing at earlier stages is considered investigational, so no pay.

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BrianP's picture
Replies 3
Last reply 1/14/2013 - 11:14pm
Replies by: BrianP, mel123, Anonymous

The IPI vs. Interferon trial is probably not even 2 years old yet but I'm curious if anyone in the trial or otherwise has received any indication as to the results of the IPI arm.  There's not much out there for the NEDers so it would sure be nice if IPI is showing some promise in the adjuvant arena.

Brian

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LynnLuc's picture
Replies 5
Last reply 1/17/2013 - 5:46pm
Replies by: Snickers60, POW, Anonymous, DeniseK, deardad

 

Written 56 minutes ago by Brandon Haley

Quick update. Mom is at the Rainey hospice house in Anderson. She has regained some speech, but it is strained. We have had a couple of short, coherent conversations, but that is all. She is excited to see savannah in the morning. Confusion does not really describe her state of mind, but it is close. We are having some good moments though. We were told that the DEX would be continued as she showed some response. Thank you all, and i will post more tomorrow.

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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94z28joe's picture
Replies 8
Last reply 1/18/2013 - 11:40am

I start Ippi as part of the clinical trial for it verses interferon. I will be receiving the 3 mg/kg dose. I'm hoping all goes well. Is there anything I should be aware of before I start and/or during treatment. I'm alittle nervous about starting but if it keeps me NED longer then I'm all for it.

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buffcody's picture
Replies 1
Last reply 1/11/2013 - 11:12am
Replies by: hbecker

When I was 15 I had a problem with inflammed lymph nodes in my right axilla. The decision was made to operate, because of possible cancer. When the operation was in process the surgeons decided to perform a radical lymphadenctomy because they believed that it was cancer. An analysis of the biopsy, however, did not show evidence of cancer. Later in the summer I had a lesion appear on my lip that was diagnosed as a granuloma pyogenicum. These are not easily distinguishable from amelanotic melanoma.  At 62, I was diagnosed with Stage II cancer of the breast, and, at 71, Stage IV melanoma, unknown primary, which had landed in my lung. 

 I had a nephew die of metastatic melanoma in 1997 at the age of 29. He also had a melanoma of unknown primary, which was caught for the first time in the left axillary area.  H, like me,  also had a radical lmphadenectomy and he was then diagnosed with Stage IV melanoma. I remember before he was diagnosed his showing me the area under his arm, and I encouraged him to see a doctor, while at the same time telling him that I suspected that he was probably dealing with the same thing I had at the age of 15. Interesting, too, was that the original diagnosis he got after his operation was lymphoma, which then got changed to melanoma. (My mother died of presumed lymphoma at 93, though the lymphoma was never biopsied.) He was 27 at the time of appearance.

My mother had stage 1 melanoma of the skin as did two of my first cousins on her side and an aunt same side died of pancreatic cancer. So a good case for familial melanoma.

But I wonder about the remote possibility that I originally had melanoma at 15, it receded and returned at age 71.  What about the biopsies that said I did not have cancer? I wonder how well the art and science of biopsy was developed in 1956, the year chemotherapy was first used, and whether, since the pathologist would probably never have been looking for a melanoma first appearing in the lymph nodes and the differential diagnosis of the granuloma and melanoma is even so difficult today, it could have been missed  With the family history, you can believe my wife and I were personally very cautious about the development of skin melanoma through the years and I had annual full body checks with a dermatologist.Nothing of any kind ever showed up before the Stage IV diagnosis.

 Speculation never to be confirmed and maybe there is good reason to think it's an impossible scenario I am painting.. I know it's all very unlikely, but could it be?

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LynnLuc's picture
Replies 4
Last reply 1/11/2013 - 12:23pm

 

Not too much new to update today.  Mom has responded slightly to the DEX, and has been able to get a word or two out.  However, there are no other encouraging signs.  Her IV was removed last night and they were not able to re-insert it.  All medications are now being given through shots.  Tomorrow morning will be her last shot of DEX and she will be moved to a local hospice house after that.  While she does seem to be in pain, she is handling it better than you would think.  She always has been a fighter...  I would expect nothing else.  
 
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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Marcia1's picture
Replies 4
Last reply 1/13/2013 - 5:31pm
Replies by: Marcia1, meeshka6059, Janner

Has anyone had experience of an elder person taking Yervoy?  My mother had been taking Temador but her lung melanoma continued to grow so they stopped they.  She did tolerate the Temador fairly well.  I was just concerned with side effects as she was diagnosed last February with Stage IV Melanoma and hasn't really experienced any problems yet.  Thank you.

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Has anyone had experience of an elder person taking Yervoy?  My mother had been taking Temador but her lung melanoma continued to grow so they stopped they.  She did tolerate the Temador fairly well.  I was just concerned with side effects as she was diagnosed last February with Stage IV Melanoma and hasn't really experienced any problems yet.  Thank you.

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Another article  on Zelboraf

 

In a new study published today in Nature, researchers using a mouse model of melanoma were able to prevent resistance to vemurafenib by altering the dosing schedule from a continuous daily dose to an intermittent dose, suggesting a possible way to prolong the onset of resistance for melanoma patients.

Micrograph of pigmented malignant melanoma; source: Nephron, Wikimedia Commons

Vemurafenib (Zelboraf), a small-molecule kinase inhibitor, is the first targeted therapy approved by the US Food and Drug Administration for metastatic melanoma, approved for tumors that express the BRAF V600E gene mutation. Resistance to the drug, however, is problematic, with the vast majority of patients experiencing tumor regrowth several months into treatment.

Martin McMahon, PhD, of the Helen Diller Family Comprehensive Cancer Center at the University of California San Francisco (UCSF), and colleagues at the Novartis Institutes for Biomedical Research in Emeryville, California found mouse models that become resistant to vemurafenib with chronic exposure have a continued dependency on the BRAF-MEK-ERK signaling pathway. The vemurafenib-resistant tumor growth that develops is actually dependent on the drug. When the drug administration was stopped, tumor regression was observed within 10 days, followed by tumor regrowth. “These data support the hypothesis that vemurafenib-resistant tumors suffer a fitness deficit in the absence of vemurafenib,” the authors conclude.

“Intermittent dosing alternates the selective pressure applied by drug treatment and prevents the evolution of a drug-resistant state,” said Darrin Stuart, PhD, a senior investigator at the Novartis Institutes for Biomedical Research and one of the lead authors of the publication.

The resistance mechanism detected was upregulation of BRAF rather than mutations within BRAF or other genes in the signaling pathway.

“Even cancer cells are sensitive to the level of oncogenic pathway activation such that too little or too much of a pathway to which a cancer cell is addicted can be deleterious to the cell. This phenomenon is known as the ‘Goldilocks effect’,” explained McMahon.

The results may have major implications for the way targeted therapies against active protein kinases are administered. “The current paradigm for oncoprotein kinase directed therapy is continuous administration—this data hints that continuous therapy may not always be the best approach,” said McMahon.

The problem is not an easy fix—physicians need to balance maximal tumor regression, typically achieved by continuous treatment, and delaying the onset of resistance, which this study suggests might best achieved with an intermittent drug dose.

Mice given vemurafenib continuously on a daily basis developed resistance within 100 days of treatment initiation. In contrast, those mice treated for their melanoma intermittently with a 4 weeks on, 2 weeks off regimen did not develop resistance by day 200 of treatment.

It is not yet possible to identify patients whose tumors are dependent on chronic vemurafenib exposure, said McMahon, but “devising such a test is feasible and ongoing.”

“There is evidence that patients with drug-resistant disease experience tumor regression when dosing is suspended, however, the therapeutic approach to test would be to use intermittent dosing from the beginning and not wait until resistance emerges,” said Stuart.

McMahon noted that there is considerable interest at the UCSF Melanoma Clinic to test whether an intermittent dose schedule of vemurafenib and other BRAF V600E inhibitors may increase the duration of responses. “The idea is now out in the clinical community and so fair game for anyone to design an appropriate clinical trial,” said McMahon. Still, more laboratory research is warranted to understand how frequently this type of phenomenon occurs and how too much BRAF V600E activity inhibits the proliferation of melanoma cells addicted to BRAF V600E signaling, said McMahon.

It is possible that changing the dosing schedule of other oral kinase inhibitors could also delay drug resistance in many other tumor types but much more research, both clinical and laboratory, is necessary.

Multiple clinical trials to test alternative dosing regimens of BRAF and likely other targeted, oral inhibitors are expected over the next few years according to Stuart. Exploring rational drug combinations is another approach that Novartis is taking.

The current study is a public–private sector collaboration between UCSF and the Novartis Institute for Biomedical Research with “a free-flow of information between the two groups as well as open sharing of materials and reagent,” said McMahon. McMahon added that testing the effects of intermittent doses of BRAF inhibitors would likely also be part of such a public–private sector partnership.

 

http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/...

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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LynnLuc's picture
Replies 9
Last reply 1/15/2013 - 6:19pm
Replies by: JakeinNY, Anonymous, awillett1991, lou2
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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awillett1991's picture
Replies 4
Last reply 1/11/2013 - 6:19pm

Found another article stating how they dosed in the study - 4 weeks on, then 2 weeks off Zel, then repeat. All mice dosed this way were alive at 100 days, all dosed continually were not. Definitely asking my doc about these Swiss mice next wk as he has been talking about dosing me on & off on a schedule. I tolerate Zel so poorly, I think the longest I have ever been on a constant dose was 4-5 weeks since last April anyway.

http://www.bbc.co.uk/news/health-20956179

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mclaus23's picture
Replies 2
Last reply 1/11/2013 - 7:15pm
Replies by: TSchulz, LynnLuc

Hello, my dad concluded with IPI in 10/2011 and has since been showing regression followed by total remission 2 months ago. His scan today showed the 2 tumors in his adrenal glands grew by 1/2 inch and he has one new one on his lymph node near the adreanal gland. He needs to have an MRI asap which hopefullly shows nothing new. If it does not show anything new he is eligible for the PD1 trial. If not it's either IL-2 or IPI again. Has anyone been thru this:????

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