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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Hi all,

I posted about a week ago regarding my Dad who was recently diagnosed with Stage 4 melanoma in his brain (3-7 mets) and lungs (one tumor).  He started whole brain radiation right away and will finish up the 10-day course of that tomorrow.  The doctors are hoping that this intensive radiation will shrink some of the brain tumors so that we can try gamma knife/SRS on the brain mets later (if they have decreased in size/number).  In any case, we are close to getting the BRAF test results and so I want to make sure that we know our next set of treatment options now that his radiation is almost done.  We did have one visit with Dr. Thompson at SCCA but, without BRAF, we weren't able to settle on a course/sequence of treatment.  And, after reading a number of posts in recent days, I want to ensure that we sequence the treatment as well as we can (especially given that his recent radiation round may help with efficacy of some of the drugs, some of these treatments need to be administered in particular orders per Medicare, some may have different efficacy given his "treatment naive" nature, etc.).  From what I understand, here are our options:

1)  If BRAF +, he should try to get on the Dabrafenib (Tafinlar) plus Trametinib (Mekinist) combo - which he can start right away.  Also, in order to prolong resistance from developing, he can take it episodically, correct?  Are there any other drugs or methods to hold off resistance?  Would you recommend starting with these drugs over ipi/the anti-PD-1 options or delay these to be used as a last resort?  From what I understand (and please correct me), these drugs show results faster than the ipi/anti-PD-1 options, he can continue to take steriods while on them (since he has a bit of swelling in his brain now), etc. - so those are some of the positives.

2) If BRAF -, he would have to try ipi first and have it fail before insurance (Medicare) would allow him to try Nivo or Keytruda.  Or, is there a way to get Nivo or Keytruda as a first line option (similar to what was just approved in the EU)?  Are any of the anti-PD-1 drugs more effective for brain mets?  Or, rather than going for single drug therapy, would it be better to try to get him right into a clinical trial for the ipi/nivo combo if he is BRAF- (given its higher efficacy but yet also worse side effects)?

What else are we missing?  We should hear about BRAF in a few days and so want to best understand our options and the pros/cons of sequencing - in order to be informed of whatever treatment comes recommended next.  What else do we need to be asking the doctors before we figure our treatment plan?  What other factors should we be considering?  For example, the doctors never told us that this whole brain radiation is a one-time deal in his lifetime - that would have been helpful to know upfront.  Had to make the call on that over only a few hours - very tough...   

Any advice and thoughts would be appreciated!  So helpful to have found this community...


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Steph001's picture
Replies 4
Last reply 6/30/2015 - 11:22pm
Replies by: Steph001, Janner

I have been recently diagnosed with superficial spreading melanoma. I had a mole on the back of my arm that my husband thought looked "funny". I also had a black, irregular mole on my temple so I figured I'd get them checked out. The mole on my temple was atypical and the one on my arm was melanoma. It's a Clark level II and the Breslow depth is .47. I see the doctor next week to have the tissue around the biopsy removed. 

I am now super paranoid and there are about 5 other "spots" that I've found that I'm concerned about. Is it common to have more than one primary melanoma at once? I feel like I'm being a crazy person! 

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Lindsay6694's picture
Replies 1
Last reply 6/30/2015 - 6:42pm
Replies by: Janner

Freaking out...Just diagnosed on friday with a clark level 2 melanoma on my thigh. after byopsy the depth is a .19 what exactly does this mean stage wise? I go in on thursday to have it removed, and they said i would just be monitored after removal.

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Polymath's picture
Replies 9
Last reply 7/3/2015 - 10:40pm

Something happened to me recently that I thought was worth sharing.  The short version of my long story is I have progressed through BRAF inhibitors, then yervoy, and was finally thrilled to be qualified for anti-PD-1 treatments.  After 4 infusions, I was feeling like this too was just not working, so thanks to this board's advice, I visted my melanoma specialist who practices several thousand miles away.  I'm always trying to stay one-step ahead with a plan B and only see the specialist occationally. The specialist recomended I discontinue Prednisone, get another scan right away, and then another after about the 7th dose and finally determine if it was doing any good.  Seemed like a good plan except when I got the results of that first scan soon after my 5th dose of Keytruda, they compared it to the prior scan when I came off Yervoy and because it did show progression, my regular onc said insurance would deny any further treatments and just like that, I have been yanked off Keytruda.  Since some would argue that anti-PD-1 takes time to work, I feel a bit cheated out of that opportunity.  The other side of that coin is that if I was not a responder, better to find out sooner than later. Of course the real big problem now is there are no other FDA approved treatments, so my only options going forward are trials.  Just wanted to send out this warning flag as this series of events really caught me by surprise.


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Anonymous's picture
Replies 2
Last reply 7/2/2015 - 1:20am

Hello all - I'm going in tomorrow for a SLNB and WLE on my right outer leg.  Had the initial biopsy a few weeks ago and it as a T3a.  What can I expect for recovery?  Will I be up and moving around right away? Will it take some time before I'm back to regular exercise?  Wishing you well.

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Kelly---11's picture
Replies 8
Last reply 7/5/2015 - 12:34pm
Replies by: Anonymous, las630, paz58, Bubbles, kpcollins31, Kelly---11, mary1233, Nicky

Hi guys 

hope every one is well! Iv been really struggling the last few days I watched one of my best friends get married at the weekend and was an amazing day, I now have got down as I can't even imagine getting married or having kids it's making me really sad. When does this get easier? I'm still so New to this and with new subq still popping up I am loosing faith and I don't want to be like this. What helps you guys? Xx

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Jenncat0402's picture
Replies 2
Last reply 7/6/2015 - 8:36pm
Replies by: Jenncat0402, DZnDef

I am wondering if anyone else had spindle cell melanoma?? It is hard to find any information on it. The mole Igad removed looked like any normal mole and i had had it for years. I was pregnant when I became concerned about it but noone else was. Once my son was 2 months old i made them take it and we dont have any accurate information. This was in Nov 2014. I am currently waiting for my 2nd opinion on my SLNB. First one was negative but I am worried because my original mole went from no mitosis to a mitotic rate of 3 (making me 1B)  with different now i am worried something was missed :( any information on spindle cell melanoma would be greatly appreciated!!


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Rita and Charles's picture
Replies 8
Last reply 7/6/2015 - 7:27pm

Is this better than nivo or ipi ?


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Thumosity's picture
Replies 7
Last reply 7/1/2015 - 9:35pm
Replies by: Thumosity, Colleen66, Squash, Anonymous, Jubes

I was diagnosed(6/17/15) with Amelanotic melanoma on my left forearm.I have a Breslow thickness of at least 1.1 and at least a Clark's Level III.I will have a wide excision surgery on 7/13/15 with Sentinel node biopsy.Also I have Hemophilia Factor VIII so I'm a little more concerned about the surgery(I am definitely having the surgery!)and the potential wound issues.

My dermatologist said that she didn't have any major concerns when she biopsied the round eraser shaped/eraser colored growth on my arm(more of a cosmetic thing I guess)so it came as a pretty strong shock that it was melanoma!Thank God she did the biopsy.I guess until I know what stage I am I need to just's a little hard to relax right now.


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Rcmcd09's picture
Replies 2
Last reply 6/29/2015 - 5:31pm
Replies by: Janner, Rcmcd09

Hi there! I'm sad to say that in my college years I used tanning beds off and on for 3 years. I never tanned before, nor have I since then as I'm too busy. A few years ago I noticed a mole on the side of my foot. Because it's on rough skin it was hard to see the shape, but it looked symmetrical, wasn't changing and was one color. The size was within reason as well. I noticed a few days ago that one small dot of the mole has become darker brown - - change! I know that MANY moles on feet are dangerous as they're many times malignant melanoma. I'm catching the change pretty early, but can't get into my dermatologist for 1 month. I'm so nervous... Could it spread that fast before I can have it biopsied? My Grandpa grew up when sunscreen wasn't a big thing and he struggled with skin cancer for a long time. Thanks!

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Bubbles's picture
Replies 19
Last reply 7/7/2015 - 12:59pm

Hope all goes well with your treatments and treatment options this week!!!  You are such a gift to all of us.  Hang in there! Celeste

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Anonymous's picture
Replies 5
Last reply 7/5/2015 - 6:05pm
Replies by: DZnDef, Bubbles, Anonymous, Ed Williams

Here is a link  about how cannabinoids could inhibits the growth of melanoma.

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Hello all, we meet with our oncologist tomorrow to learn what route Charles will take, he is Stage 4, lung tumor and subcarinal lymph nodes. Also, they need to check activity on his right leg, perineum.  His brain MRI is scheduled next week.........

We have tried to hurry up the learning curve, met with differing doctors.  We have become familiar with Ipi and Nivo, Keytrudo.......but know nothing about the Tafinlar/ Mekinist combo..

Does anyone have insight about this combo? Is it an effective "combo alternative" since Ipi + Nivo is not approved yet?

Thanks Rita


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Jubes's picture
Replies 6
Last reply 6/30/2015 - 5:13pm
Replies by: Jubes, kylez, Kim K, LaurenE

Hi all

i am doing really well. All tumours have disappeared on keytruda except the main one in my lung which has shrunk from 7.9cm at its biggest to 3cm x 1cm now. Just had my pet and it is 4.2 SUV but was 10.2 SUV this time last year. I am on steroids for the side effects from the keytruda. I have really bad arthritis type pain through my body. Much worse in the night and morning. Drs are thinking stay on keytruda and steroids as long as side effects are manageable. But some time in the future resect the lung tumour which is in the right lower lobe. Has anyone had this operation who could give me some advice? ( Drs say that in 50% of cases like this when they resect there is actually no tumour left and the brightness on the pet is the immune system working)



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