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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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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Rita and Charles's picture
Replies 32
Last reply 6/29/2015 - 2:39pm

Met with Dr. Greg Daniels today, Charles seeking second opinion.......I think that part of me hoped that seeing a melanoma specialist, he would give a better news story......and this whole journey would be over.  First off, Dr. Daniels spent so long with us - he is an amazing doctor, very knowledgeable and truly went through so much with us.....and yet we still come home reeling, trying to recap, listening ot the tape and make a game plan.  We walked away with more questions, more to think about but closer to making decisions. 

It seems the more we learn, the more we veer away from the lung surgery/lymph node removal.  We still need to have the results of a brain MRI, and areas of the most recent PET scan that need to be followed up on - Dr. Daniels was concerned about activity on the leg.  

I am finding that this forum is such a great resource to help us understand.  All of the stats and the percentages blend and blur together.  From both Dr. Daniels and our oncologist Dr. Kosty, leaning heavy towards immune therapy.   

Ipi alone - from my notes, 10% of people respond to Ipi and the length of time that you can be on it before tumors become resistant is 10 mos?  Once Ipi stops working, you advance to Nivo or Keytruda?

Nivo or Keytruda alone - better response rate 30% and can be tolerated for 2 years?

Ipi + Nivo Combo - even higher response rate and 88% of those that resopnd 2 years?

Side effects for all sometimes are too toxic and need to come off.....

Having the 3 choices - What would you do?  

Or, if he has no symptoms right you wait until there are symptoms?

Thanks for your help in explaining things to me!


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Anonymous's picture
Replies 5
Last reply 6/29/2015 - 11:29am
Replies by: Anonymous, BrianP, kylez, arthurjedi007

Has anyone had success on Keytruda even after being diagonised with leptomeningeal metastases/ spread of melanoma?  My loved one is to start Keytruda on Monday 12/15.  Wondering if it is going to help the LM?  Thank you for any information.

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Anonymous's picture
Replies 2
Last reply 6/29/2015 - 11:05am
Replies by: Jenncat0402, Happy_girl

My dermatologist sent my tissue biopsy to Castle Bioscience for them to run the Decision DX-Melanoma test.  It came back as a class 1.  Haven't had my SLNB yet.  Anyone have experience with this gene expression profile test?  Is it reliable?

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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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eturner82's picture
Replies 4
Last reply 6/29/2015 - 10:58am

Hey Guys I've been MIA for a little while. Here is my Adam update... The nurse that is in charge of things at NIH was so so so nice she went above and beyond to help me!! ( I would so recommend NIH due to her kindness alone!) sadly Adam was turned down after they looked at his MRI and they saw the Lepto. Adam is on a chemo combo right now ( he had one dose while in UVA 4weeks ago) we are waiting for his platelets to go up for his second dose. He's on 4mg of dexametazone every 6 hours and that mixed with the morphine has GREATLY decreased his pain!! He can still get up to go to the bathroom but walking is very tiring for him. I feel that we are truly taking each day as it comes and as long as pain is not a problem each day is truly a blessing. 



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Kim K's picture
Replies 8
Last reply 6/28/2015 - 9:40pm

Just wanted to let everyone know.  IL-2 is "old" but for those who respond, there is a chance to die from old age instead of mel.  I am one of those people cool

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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pamela's picture
Replies 3
Last reply 6/28/2015 - 8:55pm
Replies by: aquamak, pamela

looking to put together a local support group

Pam stage IIIa diagnosis 7/2009

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purley123's picture
Replies 10
Last reply 6/28/2015 - 11:56am
Replies by: Rcmcd09, purley123, Janner, Anonymous, casagrayson

Hey guys.

About three weeks ago i had two suspicious moles removed from my back and front. Carrying on to this present day, I felt a tingling sensation on the side of my foot. At first i thought it was nothing as this was a common occurace for the past 1-2 months, but when i closely investigated it, I was surprised to see a dark mole there (the tingling sensation was at the exact same place as the mole).

So i ended up researching on the internet (worst thing you can do) and found out that a tingling/burning sensation is an early symptom of Melanoma. As you can guess, I'm terrified. I don't know if the Melanoma has spread if it's changed or anything.

I have a dermatologist appointment booked previously for the 27th of september.. But i don't know how I'm going to cope till then.

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I started the combo today. I took the mekinist with the tafinlar this morning.  I am wondering if taking it with the evening dose would be easier..maybe sleep through side effects?  I have been very tired today..a bit shaky...slight headache and my face flushed. No fever yet... Has anyone had a red face or noticed that the timing of taking mekinist made a difference?  I read the side effects that are possible and just need some input.  Thank you!

One voice can make a song; one life can change the world.

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las630's picture
Replies 2
Last reply 6/28/2015 - 7:36am
Replies by: las630, BrianP

Hey there!  Just wanted to post my great results so that people who are newly diagnosed can know that they too can have some great news to look forward to!  :)

I had a suspicious mole removed from my left inner knee back on May 13th.  My dermatologist called me on May 19th and said I had malignant melanoma and had to see a surgical oncologist due to the path report.

I had my appt with the surgical oncologist on May 21st and was scheduled for a Wide Local Exicision with Sentinel Lymph Node Biopsy for June 19th. 

I had my surgery on June 19th and had a fairly large chunk taken out of my left inner leg by my knee, and had 1 lymph node removed during surgery from my left groin. I have about a 3 1/2 inch incision on my leg and a 2 inch incision on my groin.

I was very anxious for the test results because I had a 1.2 Breslow, ulcerated, high mitotic activility path report from the originial biopsy that was taken on May 13th.

I had my post-op appt with my surgical oncologist on June 25th and was very very very pleased to hear that there was NO lymph node involvement!!!  wahoooo  praise the Lord!!  The surgical oncologist did say that there was some residual tumor left over from my original biopsy which is why they had to take so much tissue out, and that I was upgraded to a Stage T2b, but most importantly, I am an N0!!  :)

I do need to do physical therapy due to loss of strength and sensation in my left leg, but none of that matters when you hear you are now NED (no evidence of disease)!!!  :)

So prayers work my friends, and I will be more than happy to pray for all of you!

Lots of love and hope to yinz all!!

xoxo- Lisa

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sunshinecoll's picture
Replies 1
Last reply 6/27/2015 - 9:30pm
Replies by: 273c

Had stage 3b. did tumor removal off my leg. Removed all lymph nodes on my right groin. A month after I have developed Vitiglio. I have not had the treatment yet and got the Vitiglio. Has this happened to anybody. I have read people get it after the Novo treatment but I dont start that until next week.

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buffcody's picture
Replies 5
Last reply 6/27/2015 - 1:00pm

I just got a detailed endoscopic procedure yesterday to answer the mystery of a growth/lesion that has been getting bigger over the last few months in the area of the pancreas and duodenum. The experienced doctor who did the scope reported after the procedure that it was located in the duodenum and was metastatic melanoma.  My first metastatic diagnois was in early 2012.  Since then, I have had brain radiation and a lung lobectomy as well as two craniotomies.  The new metastasis is the only sign of cancer in my body now.  I will be meeting with my oncologist about this soon, but I am interested in hearing from anyone who has had metastasis to the duodenum and what the treatment has been.  I have not yet had anti-PD 1.  Based on the pre-scope conversation with my oncologist, I presume he will be recommending a course of Keytruda.  He also wanted to explore surgery, but the gastroenterologist wsa pessimistic about that course for a variety of reasons foremost probably my age, though I do have excellent performance status.  Thank you.



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