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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LynnLuc's picture
Replies 3
Last reply 9/22/2012 - 10:57am
Replies by: Anonymous, Laurie from maine, awillett1991

My friend has been doing outstanding on the BMS Anti PD 1 trial since March 2011. Everything has completely shrunk to near nothing or vanished completely. She had one area that has had stubborn melanoma...it is a spot by her stomach in the fat lining...it is wrapped around the main artery so they can not do surgery. Through the course of this trial it has not shrunk or grown....until now. She had her scan results today. The melanoma has grown by 20% and a new met was found in her spleen.

She was taken off the trial and now referred for Ipi.

I have been in the trial since fall 2010 and have been NED for 2  1/2 years.

Just wanted to let you all know Anti PD 1 has its flaws....I am kind of upset about this. I hate for my friend to go thru IPI and the side effects. She had previous surgery and had  1/2 of large intestines and all of ascending is gone and 1/2 of transverse...that is 3/4 of large intestines removed. I don't know how she is going to handle the colitis or the skin rashes...ugh.-  Lynn
 

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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POW's picture
Replies 7
Last reply 9/22/2012 - 11:49am
Replies by: POW, Rocco, deardad, lhaley, jmmm

I have read a number of comments on this forum talking about how awful it is to be on steroids and how anxious people are to finally get off them.  It's scary to see so many strong, determined people who go through chemo with nary a wimper say how difficult it is to be on steriods. What's the deal with steroids, especially dexamethazone? What do they do to people?

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NYKaren's picture
Replies 16
Last reply 9/23/2012 - 10:40pm
Replies by: MeNDave, NYKaren, shellebrownies, LynnLuc, sjl, sharmon, Anonymous

Hi everyone.

I recently completed 6 weeks of Temodar and am going for PET scan tomorrow.  From the looks of things, I've had a partial response (so what's new?)

I realize that chemo is usually a temporary measure, and we're looking for stabilization until I can get into an anti PD-1 trial.  You never know, though.  since I've partially responded then advanced on Ipi, IL-2 and radiation, who knows what might happen on chemo.

Dr. Wolchok has said that we'd talk about adding other chemo drug(s) or switching regimins, so i'd l'm looking for any positive experience with Temodar and other chemo drug combos or other combos that have worked, even temporarily for people.

Thanks!

karen

Don't Stop Believing

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Richard_K's picture
Replies 5
Last reply 9/21/2012 - 11:36am

I had good scans last week but due to a high bilirubin count, I was taken off Zelboraf for a week.  New blood test yesterday, bilirubin is where it should be, and I was given another supply of Zelboraf; starting my 31st month on it.

Dick

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himynameiskevin's picture
Replies 11
Last reply 9/22/2012 - 10:21am

It's been pretty rough times, with the WBR and this steroid they've got me on. Luckily I'm tapering off, should be off completely by the end of the month I think. Hopefully I won't have too many withdrawal symptoms, I've had quite a bit of lower back/adrenal gland pain? Not sure but only occurs when I get stressed real quick. Also tons of fatigue, you know the steroid causes insomnia and basically a restless body syndrome. So that on top of the WBR. Oh just tireeddd and fatigued.. Just want my body to shift back to some what normal. By the way I have a Pet Scan within the next week and an MRI of my brain on the first. Hope. Sorry if I seem a little out of it and not quite myself, I guess I'm not right now.  :/   ;) As far as therapies, for the time being I'm on 120mg of temodar once a day. So far so so good. With hopes to keep things stable and maybe try IL-2 again since it "kinda" worked once.

I truly love you all. Thanks for being there.

-Kevin

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Lucassi's picture
Replies 6
Last reply 9/25/2012 - 9:59pm
Replies by: Lucassi, kylez, Phil S

My husband Mike has metastatic melanoma in the left lung, brain and adrenal gland.  He developed a brain tumor and the tumor on the adrenal gland after completing Yervoy about two months ago.  He had no side effects from the Yervoy treatments which were supposed to shrink the lung tumor.  In reality, the lung tumor grew slightly larger and the brain tumor and adrenal gland tumor developed.

Mike had a craniotomy two weeks ago and is recovering without any complications.  Unfortunately, his initial tumor was Braf and Ckit negative.  As most of you know, there are not many treatment options for patients without these mutations.  We see his oncologist in two weeks to talk about further treatments. 

I would appreciate your input as what treatments might be available given my husband's history.  I am so scared that the melanoma will spread further and there won't be anything we can do to stop it.  I know that some of you have taken Temador and was wondering if anyone started taking it after a craniotomy, and how soon after the surgery? 

Thank you for any suggestions you may have. 

Sigrid

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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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