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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dellriol's picture
Replies 8
Last reply 9/21/2012 - 6:24am
Replies by: Anonymous, mlbjab, dellriol, Erinmay22, aldakota22, KMT2003

I notice several comments about twins.  So how many of you are also twins, and how many have twins with melanoma too?  I'm an identical twin.   My  sister was the one who seemed to be "mole-y".  I'm now a 7 yr survivor and she is melanoma free, although she has had a cou[le basal cell tumors this year.  Just Curious!!!

This ain't no hill for a stepper.

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Linny's picture
Replies 1
Last reply 9/20/2012 - 12:31am
Replies by: JerryfromFauq

A nice summary and explanation of teratment options:

http://chicago2012.asco.org/ASCODailyNews/MetastaticMelanoma.aspx

Stage III, Unknown Primary; 1 positive node in left axilla

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KMT2003's picture
Replies 4
Last reply 9/20/2012 - 9:14pm

This last month has been incredibly frustrating and stressful...I was dx stage 3 in June when melanoma was found in a lymph node in my neck with extra capsular extension. I then did radiation for 4 weeks 5 days a week. In August I went for prescreening tests since I was going to start the interferon/ipilimumab clinical trial. After all the tests, I met with my doctor who told me I could no longer be considered for the trial...they found areas of concern in my bones. Talk about a shock! We weren't expecting that news at all. I was scheduled to do a biopsy of my lumbar area in my back. FNA was done, waited for results, was told it showed a cluster of atypical cells with some maligmancy. However, it was inconclusive for melanoma. I had to go back and redo the biopsy to get more sample. I went back last week for the second biopsy and had to wait again for results. Today we went back to Moffitt to get results... Once again biopsy was inconclusive for melamona and didn't have any atypical cells. Now I have to go and do an open bone biopsy so they can get a good look at the bone itself. However, in the last 2 weeks I have felt a small area of concern in my left breast get bigger. Doctor checked it today and could also tell it has grown so now we are going to biopsy that first instead of the open bone biopsy. He feels it will be much easier than the other procedure. If that comes back positive, we won't have to do the bone biopsy. I am also B RAF positive. Is it wishful thinking that since both biopsies have come back inconclusive that maybe its not related to melanoma??? Maybe I will get to stay at stage 3 instead of progressing to stage 4? I'm trying to stay positive and not let this disease control me. Is it wrong to be hoping for the best??

Kelly

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Mickey n Jo's picture
Replies 5
Last reply 9/26/2012 - 1:24pm
Replies by: Anonymous, Mickey n Jo, awillett1991

Ok, here we are again. My husband just had a short hospital stay during which time they stopped the Zel and gave him fluids to build him up a bit. He's feeling much better now, even gained about a pound and a half, but heres the tough part, should he continue on the Zelboraf at the reduced dosage of 2 pills morning and night, or switch to Yervoy. Right now we're leaning towards continuing the Zel as long as it's working. He goes for his scan on Friday, so we'll see what that shows. How bad are the side effects associated with Yervoy? He had such a rough time on the Zel.

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cemcnair's picture
Replies 7
Last reply 9/19/2012 - 3:54pm
Replies by: cemcnair, Janner, Anonymous

New to this board. I had a mole removed last Wednesday because I'd noticed it'd gotten darker and not evenly so. It came back as a malignant melanoma. I am 15 weeks pregnant. They want to remove more tissue in three weeks which seems like a fairly minor procedure. I am very concerned though because I have read that melanoma can cross the placenta to the fetus. Does anyone have more information on this? Should I inform my OB? What are the real risks to my baby?!?

Thank you.

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thrashter's picture
Replies 4
Last reply 9/20/2012 - 10:19am

this is the second positive nodule removed in about 90 days. I did opt for wait and see after visiting my oncologist. PET scan in 2 weeks and i am having second thoughts about Interferon. I am now going from stage 3 a to stage 3 b. I feel like i need to do something vs. wait and see. My oncologist seems to not be a fan of interferon. Those of you who have had interferon at my staging would you do it again? Would you do the wait and see?

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Lisa - Aust's picture
Replies 3
Last reply 9/20/2012 - 8:40pm

Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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Lisa - Aust's picture
Replies 1
Last reply 9/26/2012 - 8:35pm
Replies by: Tina D

Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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AllyNTAus's picture
Replies 5
Last reply 9/20/2012 - 9:31pm

I had scans today, 5 months into Dabrafenib, and was really scared as I had discovered a lump in my left armpit last week. I was shaking as I pulled out the scan report and read it, and it said everything was stable!! "No axillary lymphadenopathy" and all other measured lymph nodes either the same size or slightly smaller, all organs including brain clear. So it is a mystery what this lump in my left axilla is, all I can think of is that I've been doing some gym workouts for the last 4 weeks, and maybe there's been some muscle strain leading to some sort of cyst or knot?

Will be seeing my oncologist tomorrow to go over the scans and get him to feel the lump, but I would have thought the radiologist would have reported on it if it was anything suspicious.

Hoping and praying that Dabrafenib keeps on working a bit longer!

Wishing strength and good health to all you warriors out there,
Ally

A bad day's fishing beats a good day's work everytime

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 They posted on FB

 

I now have two Heavenly Fathers, as my earthly father, Bob Lockey, went to be with Jesus last night after his battle with melanoma for over 2 years after his original melanoma over 20 years ago. He was so peaceful and comfortable, for which we are thankful.
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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Anonymous's picture
Replies 4
Last reply 9/19/2012 - 4:03pm
Replies by: Anonymous, POW, sjl

I am trying to understand this article. Does this mean they are figuring out a way to make Chemo more effective against melanoma, or does it mean they know why?

http://www.sciencedaily.com/releases/2012/09/120917132351.htm

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gofamily's picture
Replies 2
Last reply 9/19/2012 - 12:19pm
Replies by: awillett1991, POW

My husband has stage 4 melanoma with metastasis to the liver. He was on Zelboraf which worked well until 1 month ago when a new tumor appeared and his liver tumor became active again on the PET scan. Does anyone know of clinical trials specifically for Zelboraf resistance?!

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My husband has stage 4 melanoma with metastasis to the liver. He was on Zelboraf which worked well until 1 month ago when a new tumor appeared and his liver tumor became active again on the PET scan. Does anyone know of clinical trials specifically for Zelboraf resistance?!

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