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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Ronskidtexx's picture
Replies 6
Last reply 1/16/2013 - 11:27pm

It has been about one year since diagnosis and surgery for my Stage IV Melanoma.  I had surgery to remove two tumors and radiation treatments to my neck. I had a radical neck dissection along with a flap of my chest.  My second tumor was removed from my ribcage area.   My quarterly scans are in:

 

CT SCAN of Neck--Clean

CT SCAN of Abdomen, Chest, and Pelvis--Clean

Ultrasound of Neck--Clean

MRI of Brain--Clean

 

When initially told I may live a year, pre-surgery, miracles continue to happen.  Don't ever give up.  Don't read all the bad news on the internet.  Everyone's body is different.  I am currently on no meds.  I will continue the fight and I feel for everyone that is going through this horrible disease and experiencing much worse effects. 

 

Ron

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buffcody's picture
Replies 4
Last reply 3/4/2013 - 3:02pm
Replies by: JerryfromFauq, awillett1991, Anonymous, POW

On this and another forum, people talk about getting tested not only for BRAF mutations but C-Kit and RAS as well.  Maybe others.  I know that my insurance allowed me to be tested for BRAF and this was done twice using older and current techniques.  No mutation. Both tests paid for by my insurance.  I've mentioned being tested for C-Kit but my oncologist seems to duck the question.  I have an unknown primary, though it is assumed, I suppose because of likelihood rather than anything strictly scientific, that it was originally skin.  Would it benefit future treatment to know about the other two mutations listed or any others?  Is there any insurance coverage for other tests besides BRAF? I would not hesitate to pay for them out of pocket is they could tell me something significant for further treatment?

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Anonymous's picture
Replies 4
Last reply 1/14/2013 - 5:41pm

I am 62 year old healthy male. I was diagnosed with melanoma unknown primary late 2012. I had two tumors removed in small intestines in October2012. I still have small tumor remaining in right medial lobe. All CTs and MRIs have been clear of disease in other sites. BRAF and CKIT mutations negative. Dr. at MD Anderson is recommending Biochemotherapy and then mass removal. He has also discussed combo chemo and Yervoy as two other options. Doing any treatment before mass removal. MD at home insists mass one out first and then do Yervoy or another type of chemo.

Has anyone been in similar situation that could share experience? Anyone had any of treatment options in similar situation... experience?

trying to make right decision.

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Owl's picture
Replies 3
Last reply 1/15/2013 - 8:00am
Replies by: Owl, Tina D, awillett1991

Dear all,

after one week 'holiday' my husband is now back on Z since Friday, but on a smaller dose, 3-0-3. His rash hasn't disappeared but is much better than a week before. He got some steroid salve and 'anti-histamine' which helped after a couple of days. We hope that his skin will get better over the time and he can stick with a lower dose without taking any steroids.

Thank you for the latest information about Z and a possible on/off therapy avoiding resistance. It is also encouring to hear that MEK is hopefully close to be approved. In Germany this information is hard to get so that's why I always come back to you.

Jenny

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sharmon's picture
Replies 3
Last reply 1/13/2013 - 1:42pm
Replies by: Owl, Anonymous, NYKaren

Hi,  Brent will be taking his 4th infusion of Mercks Anti pd 1 on the 16th  Wed,   We cannot see any evidence of tumor regression on his back where the biggest tumor is.  He has not been able to back off any of the pain meds he takes.  He is active, walking, shopping cooking, on a small scale.  My hope is that maybe it takes all four doses to get enough in there to start a response.  He gets scanned on the 6th of February and we will know for sure.  There just isn't a lot of information on how it works or how long it takes,  that is  reported anywhere that I can find to use as a marker.  I know everyone is different.  I know that the drug is new and I know that is new and different for everyone. 
As you all know the waiting is the worst and as of now I have no plan B and the time is slipping away.  I need to start trying to find out what to do next if this isn't working.  I have always had the research  and appointments for the next treatment lined up by now.  Should we think about trying IPI again?  redo the testing for a Braf mutation?  Try IL-2?  Go back to MeK if it is approved by then?  Use some radiation to ease the pain in the bone mets?   Our doctors so far have made it a point to let us know what he is on isn't working but have never had a plan B. That was left to uis to decide.  Thanks for reading.  Any suggestion or words of encouragement is alway warmly welcome.

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Join us for a Webinar on

Wednesday, January 16th
 
We are pleased to bring you another excellent webinar that will empower your knowledge about strategies in immunotherapy. Jedd Wolchok, MD, PhD, is a medical oncologist at Memorial Sloan-Kettering Cancer Center and a member of MIF's Scientific Advisory Board. He has vast experience in melanoma treatment and immunotherapy.  Join us on Wednesday, January 16th at 1:00pm  EST for this exciting slide show presented by Dr. Wolchok and hear patient questions answered through the moderator, MIF President and Founder, Catherine Poole.

 

Register @:

https://melanomainternational.webex.com/mw0307l/mywebex/default.do?nomen...

Please send any questions you might have in advance to cpoole@melanomainternational.org.

I'm me, not a statistic. Praying to not be one for years yet.

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Pat-Wife of Carl's picture
Replies 5
Last reply 1/14/2013 - 6:47pm
Replies by: Pat-Wife of Carl, jmmm, POW

I have not posted for a while.  My husband has been participating in a MEK inhibitor trial in Nashville for 2 1/2 years.  He recently displayed bouts of memory loss and disorientation.  After a head CT and brain MRI, was diagnosed with a huge brain tumor.  At this point it is not known if it is melanoma.  It does not present itself that way, but has grown very rapidly to a large size which is unusual for a benign tumor.  Have any other melanoma patients had fast growing brain tumors that have turned out to be benign?  I know it is a reach, but praying that this may not be melanoma.

Pat 

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karebear1905's picture
Replies 11
Last reply 1/16/2013 - 3:24pm

Hi! I would like to introduce my self. I was diagnosis with superficial spreading melanoma stage 3b in April 2012. After snb and wide excision along with lymphorectory in my groin, I have been NED since. For treatment, I decided to participate in the ipi trial offered for 10mg. I finished the infusion phase and have moved forward to the maintainance phase beginning the 24th of this month.

The biggest thing that I have struggled with since my diagnosis is the psychological effects of not being certain of the future. I constantly find myself viewing the statistics and thinking that I may be a casualty to this disease. I doubt myself and my faith. I am afraid of leaving my two children without a mother. I guess the biggest thing I yearn for is peace of mind. I always get a lot of anxiety especially whenever my 3 month scans come up with the study I am in. Does anyone get as anxious and doubtful as I do?

I know I must live for the moment but some reassures for the future would be nice!

Karen

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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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