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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juless1's picture
Replies 8
Last reply 4/11/2013 - 11:35am

My husband is stage 4 metastic melanoma and we have not seen a melanoma specialist.  His oncologist is GREAT and we have alot of confidence in him.  But....now I am wondering if we should be seeing an oncologist that specializes only in melanomas.  From what I have read his treatment is standard protocol  - he is BRAF negative so Yervoy was his drug of choice.  Are we wrong not to go to an oncologist specializing in melanomas?!?!?

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Tim--MRF's picture
Replies 4
Last reply 4/12/2013 - 12:28pm
Replies by: mrsmarilyn, POW, Owl, NYKaren

I have been on the road a lot and am a bit behind on posts with MPIP.  Karen, thank you for flagging your post about the new GSK drugs.

GSK has two drugs for melanoma--one is a BRAF inhibitor like Zelboraf (vemurafenib).  The other blocks the next step down in the MAP kinase pathway--MEK.  The data is complete on these drugs and the FDA is currently reviewing the data.  They have announced June 3 as the PDUFA date on these drugs, or the date by which the FDA response to the application will be made.  Sometimes the PDUFA date is pushed back, as happened with Yervoy (ipi) but this is rather unusual.  More likely the June 3 date will hold, or something will be announced early.

The BRAF drug, dabrafenib, will only be available to people whose tumor has the BRAF mutation.  The MEK inhibitor, trametenib, will likely be used for people who are BRAF wild type but have the NRAS mutation, and may be used more broadly than that.

The best thing about this is that with an approved MEK inhibitor doctors can more readily prescribe the BRAF and MEK drugs on combination.  The data is clear that this is a better approach than a BRAF inhibitor alone.

Since GSK did not apply for approval of the combination it is not clear if payers (insurance companies) will cover the cost of the combination.  This will all need to be worked out, and might be an opportunity for the patient voice to be heard.

By the way, I am in Denver for our bi-annual in-person board meeting.  If you have anything you would like me to convey to our board please send me a note at tturnham@melanoma.org.  We meet this afternoon and tomorrow morning.

Tim--MRF

 

 

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Colleen66's picture
Replies 1
Last reply 4/9/2013 - 8:11am
Replies by: G-Samsa
SD's picture
Replies 3
Last reply 1/8/2016 - 12:21pm
Replies by: Anonymous, SD, vivian

Hello, 

I'm 33 years old male from Delhi India. I've been diagnosed with metastatic Desmoplastic Melanoma  stage 4. It originated at a mole on scalp and metastasized to salivary gland and lymph nodes nearby. All of it was discovered almost simultaneously and was surgically removed (with wide excision). PET CT now shows NED. It has been one month since the surgery and I am now struggling to find sound advice or treatment from doctors in India. I have been to the best ones here. They all say its too rare for them and they are not sure of the best course of action, although they have mentioned interferon -alpha as one of the options.

I have decided to come to US for a month to explore further options. 

My most pressing concerns at the moment are - 

What should be the course of treatment for me now?

Which doctor/hospital should I consult with in US - I'll be travelling to New York first and have friends there. NY and surrounding area will be most comfortable for me. So far I'm leaning towards about Dr Sanjiv aggarwala of St Lukes's UHN, in PA. (based on reference from doctors here, but they dont know him directly). The other frequent recommendation is MD Anderson in Houston. Any other better ideas?

I would be obliged for any guidance/suggestions you all can offer.

Thank you!

SD

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buffcody's picture
Replies 3
Last reply 4/9/2013 - 7:48pm

You will find a link on the site below to a most interesting article about the relative rarity of the BRAF mutation among the Irish, while there are other melanoma-linked mutations more common to us folk.  I'm 7/8 Irish ancestry myself and BRAF-negative. 

http://www.newswise.com/institutions/newsroom/2818/

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tony9511's picture
Replies 10
Last reply 4/13/2013 - 3:35pm

Really enjoy reading some of the posts on this board.  Once I have completed the procedure and am able to get back on this site I will be asking for different experiences with the aftercare.  Radiation, Interferon etc etc.  My surgeon says there will be a variety of options available, so that is a good thing.  But than again its the VA and you never know.  Good Luck everybody in their fight against this pain in the......disease. 

Tony

May 2012 stage 2 Clarke level IV...wx surgery

March 2013 reoccurrence same spot on should wx surgery......positive neck lymph nodes, armpit lymph nodes

April 2013 neck surgery.

May  2013 the real fight begins.

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nancy mary's picture
Replies 5
Last reply 5/2/2013 - 6:57pm
Replies by: ekimap, lou2, buffcody, Anonymous

So they say that melanoma in situ (or Stage 0) is 95% curable with wide local excision......

What about the other 5%?  What would be the mechanism of it advancing  for those cases?  When asking my doctors, they have

offered that the excision may have not been done completely or that there was a delay from initial diagnosis to full WLE? Or that it really wasn't 

a stage 0 at all?  Any comments?

thanks; trying to understand this.

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Jewel's picture
Replies 1
Last reply 4/7/2013 - 9:34pm
Replies by: Sandy11

Hello everyone,

 

My husband and I got the wonderful news that his scans have come back clear, that now makes us 18 months since

last recurrance. On my husbands follow-up visit our Oncologist sees a mark on my husbands scar from his CND on his groin

that he would like to have biopsied. My husband and I have also been watching it but thought it was just a mark from his surgery,

it is brown in color, not dark. Needless to say I am now worried but my husband seems less upset since the scans have come back

clean......this is such a rollercoaster for all of us. I guess my question is this...what did your recurrances look like? My husbands

came in the form of nodular and dark or clear.

 

Thank you

 

Jewel

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Judy D's picture
Replies 9
Last reply 4/8/2013 - 11:19pm

I have been on Zelboraf for 18 mo. Had recent CT and NED, yea! My question is has anyone taken a small break from Z? I want to go on vacation and would like a break from the side effects. I am thinking only for one month. What are your thoghts or experiance in this area?
Thanks, Judy

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

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Jaryllane's picture
Replies 24
Last reply 4/11/2013 - 4:42pm
Replies by: Jaryllane, Kim K, Anonymous, NYKaren, kylez, Amanda, Linny

I had melanoma on my collar bone in 1981 which was removed surgically and I was fine for decades.  Now it has come back in my lungs.  I had one tumor removed last summer, July 2012, and now I have 7 small tumors in my lungs.  My oncologist is recommending a clinical trial of MK-3475.  Has anyone had experience with this drug? 

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buffcody's picture
Replies 8
Last reply 4/8/2013 - 5:35am

My last Yervoy infusion was January 2. Now in April, the itching and rash are worse than ever, though still a very small price to pay if it is doing its job.  So no big complaints but just curiosity in learning what other people's experience has been with this side effect weeks and months after the last infusion.

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Sandy11's picture
Replies 10
Last reply 12/12/2013 - 2:31am

Hi, my husband is stage 4 and finished Ipi treatment 4 months ago. He is still experiencing significant fatigue.  Has anyone had this happen for this length of time? Thyroid and other tests came out fine. On a good note.. have some positive results.. awaiting more tests later this month. Thanks to all the warriors. I look forward to your replies.   Sandy

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joy_'s picture
Replies 5
Last reply 4/6/2013 - 8:35pm
Replies by: Linny, joy_, awillett1991

Hi everyone!  My husband has been on Zelboraf (960mg twice a day) for almost 3 weeks now.  He has the "usual" side effects of body rash, fatique and a little hair loss, but one that he is having that we haven't seen discussed anywhere is lymphedema.  He had a radical LND (groin) almost 3 years ago and has never had much of a problem with lymphedema in that leg.  It has been very mild over the past few years, but since he has been on Zelboraf it is a problem and very uncomfortable.  Compression stocking doesn't even seem to help.  Any thoughts on why this is with Zelboraf?  Just curious if anyone has any insight or experience with that.

He only has 3 more weeks to go on Z and then on to Ipi as part of a trial so I feel certain this is temporary, and we will be trading these side effects for a new ones soon....

Thanks for any feedback and keep up the good fight!!!

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/24/2013 - 1:13pm
Replies by: MeNDave, gabsound, NYKaren, Linny

Hi Julie,

 

I was happy to see you posts today. How are you doing? Are you still on Pd1?

 

I am sending positive thoughts & prayers your way!

 

MaryBeth

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