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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RAF kinase inhibitors have substantial therapeutic effects in patients with BRAF-mutant melanoma. However, only rarely do tumors regress completely, and the therapeutic effects are often temporary. Several mechanisms of resistance to RAF inhibitors have been proposed.

Continued here:

http://www.nature.com/nm/journal/v19/n11/full/nm.3392.html?WT.ec_id=NM-2...

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rebeccasilberman's picture
Replies 3
Last reply 11/7/2013 - 3:28pm
Replies by: rebeccasilberman, Anonymous, DebbieH

Hi,

My name is Rebecca. I was diagnosed with Melanoma in July. I had surgery to remove the nodule on my right thigh and a sentinal node biopsy. One of the nodes was positive for cancer.

I have been going to doctors and trying to fugure out what to do next. I am very aprehensive to do Interferon because I have a history of depression. I have been told by two doctors that BCG is an option.

Has anyone tried BCG and if so have you found any benefit?

 

Thank you!

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DeniseK's picture
Replies 7
Last reply 11/7/2013 - 3:27pm
Replies by: aldakota22, Anonymous, DeniseK, awillett1991, JerryfromFauq

Didn't mean to post anonymously

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Judy D's picture
Replies 8
Last reply 11/7/2013 - 3:00pm

Anyone not on any treatment plan having been diagnosed stage IV? The reason I'm asking is because I'm stage IV with NED for the last 6 months. I was on Zelboraff but my Dr took me off because of the extreme photosensitive issues I was having. I am going to begin new drug soon but wondering if we will ever be free of treatment
I am so thankful and blessed to be in the situation I'm in now. I just believe we can never give up

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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HopefulOne's picture
Replies 7
Last reply 11/7/2013 - 2:42pm

Hi there ... my husband had his last infusion on September 10 (he's been Stage IV since May). Had his PET scan last Tuesday (7 weeks after that last infusion) and we got the report Saturday (don't see oncologist until tomorrow afternoon). In it ... it shows some lymph node involvement (2 with low SUVs), an area of soft tissue density in his chest and some other new focus with increased activity in his thighs. I know we'll find out our course of action tomorrow - but just wondering if the Yervoy needs more time to work its potential magic. Any thoughts/experiences? Trying to think/hope the doctor would have called us last week if she was overly concerned ... but then again just wondering if she was waiting to have a more indepth conversation with us tomorrow ... Thanks ... 

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POW's picture
Replies 3
Last reply 11/7/2013 - 12:44pm

Shelby Moneer at MRF posted a message today asking us to let him know when we see spam postings. I am moving his message to new thread so it will be easier for everyone to find when needed.

=========== Original Message =====================

 

Hi Linny,

Several MPIPers contact me directly when they notice spam on the bulletin board. I delete these posts immediately, so I'm not sure how or to whom you have reported spam in the past.  Please feel free to let me know if you see something we've missed. You can email me directly at smoneer@melanoma.org. I try my best to look through MPIP posts every day or two for spam but I can't possibly catch all of it. Our new website allows us to delete all of the spam much faster than before and we are continuously working to decrease the amount of spam that gets through. Again, we can't possibly stop all of it, but I assure you, we are trying our best.

Thanks,

Shelby - MRF

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My last MRI show signs of early Leptomeningeal disease (brain tumors) metastatic melanoma. They want to do a biopsy of one of the tumors to make sure is LM disease before trating with standard protocol (radiation plus quimo)

Few questions:

Has anyone had this procedure? I'm a bit scare of it.

Is Zelboraf  or Temodar treatments good for a NON B-raf mutation patient?

Is anything left for me outthere besides radio-quimo?

Thanks

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Hi

I have read many post from people wondering when Merck PD1 will get FDA approval. Sadly, it seems like a long time to wait till 2015.

In this article Merck is stating the following:

"Merck said Sunday it plans to start late-stage clinical trials testing lambrolizumab in patients with a deadly form of skin cancer, melanoma, as well as non-small-cell lung cancer, in the third quarter. If all goes well, the company could file for regulatory approval in 2015."

http://www.marketwatch.com/story/merck-drug-shrinks-tumors-in-melanoma-p...

Denise, I know that you need this drug NOW! I would contact BMS & Merck.

I read in this article and other articles the names of some key Merck personnel working with the PD1 trial so maybe you can contact them for compassionate use.

I would mention in your email that you are aware of Nick Auden's petition requesting PD1 compassionate use and you want the SAME consideration for PD1 under compassionate use. I would also get your Doctors to support your request that you can benefit from PD1.

I am NOT sure that these are valid emails but you can try them.Here is the contact information that I found for these key Merck personnel working with the PD1 trial:

Merck Research Doctor-Dr. Scot Ebbinghaus    email:scot_ebbinghaus@merck.com

Merck VP-Gary Gilliland  email: gary_gilliland@merck.com

address:

Roger Perlmutter-President

Merck Research Laboratories
126 East Lincoln Ave
Rahway, NJ 07065-0900

 

Here is the contact for BMS:

Dr. Michael Giordano - michael.giordano@bms.com

 Les Enterline: les.enterline@bms.com

sarah.koenig@bms.com

 

Good Luck

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/6/2013 - 9:29pm
Replies by: NYKaren, casagrayson

Hey Everyone,
I had a pet scan last week and an MRI today. The pet scan showed several new lesions and growth of old ones. I was hoping the brain mri was at least stable so I could go into a trial but bad newsthere as well, I have 6 new lesions and some are bleeding. Since the mekinist/dabrafenib iisn't working its on to next treatment.....temodar. I asked if I could get gamma knife again and they said only if I'm having symptoms. Well of course I'm having symptoms, dizziness and headaches. My oncologist said its not reccommended to have gamma knife more than once. I thought that was WBR? Does anybody know how often you can have gamma knife?
Thanks for your help, I'm running out of options.
Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/6/2013 - 9:06pm
Replies by: DebbieH

I'm going to sit in the chat room for a while if anyone wants to chat about melanoma, or anything for that matter!

DebbieH

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arthurjedi007's picture
Replies 2
Last reply 11/6/2013 - 4:38pm
Replies by: arthurjedi007, Mat

I've been on Zelboraf for 8 weeks. The full dose 8 pills a day. I just had my first PET scan since starting it and everything is pretty much the same which is lots of cancer in my bones of either the same or a little worse intensity. Anyone else experience this bad Zelboraf result? My doctor is trying to figure out what to do next. According to the biopsy of my t10 vertebrae I'm BRAF V600E. The first PET scan done shortly after starting radiation showed cancer in several bones but nowhere else. They did pallative radiation of that area which the second PET scan showed a 20% shrinkage but growth in other tumors during those 6 weeks that weren't part of the radiation but still the same bones and nowhere else. Then they put me on zelboraf but this 3rd PET scan has no shrinkage and a little growth plus 2 skin cancer spots. My white blood cells were great everywhere except the one for the bones. Now they are less everywhere. The doctor was quite surprised with the PET results because this only happens like 10% of the time he said. Any advice would be appreciated on how to best beat this cancer. I believe they will probably start me on ipilimumab or maybe the trial that combines that with nivolumab since my doctor is part of that. I'm starting to be concerned if their biopsy was correct. Anyone have a biopsy diagnosed melanoma but it is some other type of cancer? As far as Zelboraf symptoms I've had about a dozen or more. The most noticable is the rash from neck to ankles which is slowly going away. Also a couple cancer spots appeared on my skin and PET scan although I've stayed mostly out of the sun and had the uv clothing and stuff on. Not sure what type they are but one is believe to be the squamish. Also my hemroids have starting bleeding way more than ever and may be more to it so getting a colonoscopy. Also my left side hurts quite a lot but nothing showed on the PET/CT scan. Dunno what else to say. I'm quite at a loss expecting the good results the doctor expected only to have gone through all this with no shrinkage.

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Hi all,

I am a melanoma stage 3 survivor. I started a cancer awareness company called WEAR AWARENESS to give back to those that are still fighting their cancer. Proceeds of every shirt sold goes to current cancer fighters for everyday expenses not covered by insurance. Things like co-pays, traveling expenses for long distance doctor appointments, etc. 

If you or someone you know is currently battling melanoma, go to www.wear-awareness.com and NOMINATE them. We need cancer fighters to give back to, and are excited to do so!

We have a melanoma designed t-shirt that is really cool. Our shirts are soft and durable. Check it out www.wear-awareness.com Below is a brief story of my melanoma, but you can find a longer version on my website. 

I was diagnosed a week after I graduated from college. I was 22. I had an immediate surgery to remove my melanoma which was on my back. The doctors biopsied a few lymph nodes in my right groin. I was devastated when they came back postive with cancer. I then had a surgery to remove all lymph nodes in my right groin. They had to cut a leg muscle and move it, then reattach it to reach all of my nodes. This caused my to not be able to walk for a month. I then did interferon for a month. I was the few 10 percent that lost over half of my hair from this treatment. I then decided not to continue with the 11 month treatment program.

THANKFULLY I have been cancer free for 20 months.

Thanks for reading! Prayers go out to everyone going through melanoma. I have been there...you will get through it and be stronger for that!

Casie 

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Michelem's picture
Replies 5
Last reply 11/5/2013 - 12:35pm
Replies by: Michelem, Zan, DonnaK, Cooper

Our surgical oncologist has just referred us to a medical oncologist - Dr. Vijay Suhag who is based at Sutter Roseville.  He is board certified in medical oncology, and the bionotes I can find list several types of cancer he treats, but make no specific reference to melanoma.

I did ask the surgical oncologist if he would be referring us to someone who specializes in melanoma and he said yes, "this is who I work with all the time".

I see a lot of traffic here about the importance of working with someone who specializes in melanoma, and I would appreciate your thoughts.  My husband is Stage IIIB. 

MicheleM

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Replies by: LuckyMan51, awillett1991, Anonymous

So yesterday I received bad news from my oncologist.  I was first diagnosed with a melanoma on my leg in June of 2011.  It was removed with no lymphnode removal and I was great for 2 years.  In June of this year - the melanoma returned in the same spot - this time at a stage IV. I have a tumor on my leg and tiny tumors in my lungs and abdomen.  I was placed on a clinical trial that uses Ipi - Yervoy and Novumulab? PD1.  I just finished the Yervoy and went for scans and there is now a spot on my brain.  The CT scans showed shrinkage in the other tumors - but the spot on the brain could disqualify me from the trial.  If the Neurosurgeon thinks it will help - they are planning some type of radiology to target the spot on my brain.  Has anyone else gone through this?  I need some support.  I felt like I was doing everything right - and now this.  Thanks.

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Germer's picture
Replies 3
Last reply 11/5/2013 - 9:27am
Replies by: Germer, Janner, Anonymous

I was reading on BBC about a blood test that could potentialy detect the spread of Melanoma by looking for TFP12 markers. Has anyone heard of this or know anything about it? Does anyone know when it might be available either in trial or in the mainstream?

http://www.bbc.co.uk/news/health-24770207

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