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.

Expand/ Collapse Topic
Replies By
View Topic
DonnaK's picture
Replies 1
Last reply 11/8/2013 - 2:11pm
Replies by: Janet Lee

Has anyone had radiation to the spine (low dose)?  What about radiation while taking dabrafenib/tremetinib?  John has a 3cm mass in his spinal canal (ID'd by MRI) but the docs believe it is asymptomatic.  We initially declined the radiation as he had a very poor reaction/response to WBRT but as John's pain increases, I am wondering if it is actually neuropathic pain.  Any successes with spinal radiation?  What about treatment with neurontin or other drugs?



Login or register to post replies.

melissa ann's picture
Replies 5
Last reply 11/1/2013 - 9:10am
Replies by: Tina D, BrianP, Fen, GAngel, Phil S

I am so very sorry to say that I lost my best friend and sweetheart Saturday morning 10/26 at 2:00am. He is no longer in pain and his body is whole again in heaven. Peck taught me so much about faith and our God and it brings me peace to know that he is rejoicing in heaven. We are all very sad and missing him already. We had a beautiful day  with him in the hospital before he left us. He went with a smile and peace on his heart. He fought melanoma for 12 years and lived life as much as possible.  we have wonderful memories.   He is the most amazing husband , father, friend and physician. And I am so lucky to have called him my sweetheart. I appreciate all of you and wish nothing but healing for all.  Peace!

Login or register to post replies.

My husband just returned home from Afghanistan. A few days after his arrival I noticed a black mole on the back of his neck and a suspicious spot on his leg. To make a long story short, he has a biopsy of the neck and was told it was melanoma. He went back and they made a large incision on the back of the neck. That biopsy can back "negative". He wasn't given a stage or depth.

The first time he went in he was told the spot on his leg looked fine. After the second biopsy of his neck, a full body check was performed. The doctor pointed it the leg spot and they scraped it off and sent it in for a biopsy (we are awaiting those results).

What is next? Other than skin protection, are there any other tests that should be performed to make sure it hasn't spread beyond that spot (to the lymph nodes, for example)?

He is acting like it is no big deal but I am slightly worried short the whole thing. Sadly, I don't have a lot of faith in many of the doctors I have seen on the military posts so I just want to make sure we have our bases covered.

Login or register to post replies.

Jamietk's picture
Replies 3
Last reply 11/14/2013 - 8:13am

Just stopping in to drop you all an update and hopefully encourage some people (especially newcomers who may be looking for some positive stories). Had my 8 year checkup at MDA this month. I'm still NED a little more than 8 years from diagnosis of a Clarks IV, Breslow 2.1, mitosis 1 or 2, Stage IIA on my right forearm. Best wishes to all. Always sending prayers for the melanoma community. I'm the 3rd generation in my family (grandma and uncle died from it) so it will always be something I'm passionate about. Take care everyone. I'll be back next year.

Login or register to post replies.

bj63's picture
Replies 17
Last reply 8/8/2014 - 8:07pm

As some of you know, I've been on Zelboraf for a year, NED for at least nine months.  Well, unfortunately I found out last Friday that I have multiple brain mets in all four brain quadrants after waking up that morning with severe neurological double vision problems and nystagmus.  Both the oncologist and the radiologist think there are just too many (and too much edema, currently) for SRS or other targeted prodedures, and fearing I might have a stroke, put me on dexamethazone right away, along with WBR.  I've been doing the treatments and responding well, in that my vision has cleared up for now.  But we know this is only a temporary thing.

But here's the kicker: The Zelboraf apparently is still working on the tumors within my body, as the PET-CT I did last weekend shows NED anywhere outside my skull.  Since there is no decisive data on whether Zelboraf does or does not cross the blood-brain barrier, the Onc wants to try dose escalation, thinking that higher concentrations might help get more of the drug into my brain.  He said that in his searches, he has found two documented cases worldwide where it has been tried.  One was for a person who had stopped responding entirely to Z, and the dose escalation had no effect.  But the other case was a person like me, who had brain mets while the body remained clear, and they were able to elicit a partial response. 

Anybody else here tried any does escalation of Z?  Thoughts?

Sometimes no news is the best news!

Login or register to post replies.

hopeagain's picture
Replies 5
Last reply 10/30/2013 - 1:19pm
Replies by: MaryD, Judy D, sailinjeffnk, doro, Anonymous

Anyone knows of a good melanoma oncologist in the San Francicso area? What treatments does he offer?

Anyone treated by Dr. O'Day? What treatments does he offer?

Login or register to post replies.

hopeagain's picture
Replies 3
Last reply 11/12/2013 - 11:34am

Was stage IV with many mets everyone. Ipilimumab extrememly successful taken initially 6 years ago, and received boosts twice along the way but cannot receive again due to a side effect from the IPI. Now mets to liver and need some update on new treatments (not biochemo/IL-2/interferon) [such as anti-PD1, etc...] and if you had any experience with them.

THank you very much,

Login or register to post replies.


I had this question a while back: where can I find more about the cost of medical procedures across US and finally I found a website that provides the means to access it.

The site allows sharing of previous experiences about medical procedures, doctors, etc. and get free access to similar information when it is launched early next year. All I needed to do was to fill in a 10 minute survey and provided them with an email address where I'll receive my account and password.

I thought this might interest some of you.


a patient like many others

Login or register to post replies.

MattF's picture
Replies 2
Last reply 10/31/2013 - 12:49pm
Replies by: Michelem, BrianP

I signed into the Ipi vs Interferon Trial at UCLA.

It is random trial of either Interferon High Dose or Yervoy (Ipi) Low Dose.

Just doing admin stuff and tetsts soon....told i will be randomized and start within 3 weeks.

I will keep everyone updated.


Login or register to post replies.

shonnat's picture
Replies 6
Last reply 10/28/2013 - 5:03pm
Replies by: shonnat, Anonymous, Janner, POW, Mat
My husband was diagnosed in June with stage 1V mel. 3 tumors in the brain and one lymph node in armpit and one in abdomen. 1 brain tumor was 2.5cm and symptomatic and become 3cm within 2 months. The other 2 smaller and stable and have not changed since diagnosis. Was given wbr immediately and then a decision to have gamma knife surgery about 6 weeks later on the large tumor. Once that was done he started on Zelboraf. He has been on Zel for 2 months with no response in the body or brain. Few side effects from taking it though.
About a month after gamma knife his scan showed slight shrinkage but his presenting neurological symptoms are worse than before surgery. He has lost the use of hand and leg on one side of his body They say its the brain swelling and he is on high dose steroids.
They are not helping either. We will wait and see if it can get better. It takes 3 months they say for radiation to fully work.
We are being treated at the BC cancer agency which I believe is very good.

His medical oncologist is surprised that Zel is not showing results. It usually acts fast. Does anyone have experience of it kicking in later. She is waiting another month to see if there are changes then she is thinking of trying Temador as it crosses the BB and he has hardly any issues with mel anywhere else. Has anyone had any success with it for the brain? We could try IPI but maybe later as it doesn't seem to have a high % of success with brain mets, or am I misinformed.

Its very tough as we have had not much success in any area. 

Any suggestions or positive experiences could really help at this point. :idea: 



Login or register to post replies.

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.

Login or register to post replies.

We are in the process of organizing a market research study amongst Melanoma Stage III and IV patients who are currently taking medication for their melanoma. We are seeking patients and their caregivers/family members.  
Time: Open 
Location: From home - writing answers to the same 6-7 questions for 30 - 45 minutes a day for 1 week
Compensation:  You and your family member/friend/spouse will receive $325 in total for your participation, which can be donated if you so wish. 
All responses will be confidential and aggregated and/or without identifying information.
Please contact Shanon Sitkin at should you be interested.
Thank you,
Jan Mallery-Groom
Clinical Research Support Services

Login or register to post replies.

Haven't seen this article posted on here.  Pretty interesting read on the state of melanoma treatment and the cost associated with in.  Thanks to CherylL for forwarding it to me.

Login or register to post replies.

Very interesting.    Now would this make it safer for me to take IPI (Yervoy) if they would let me keep taking my Gleevec?     Also I am very interested  in how much Curcumin cuts down the colitis if taken when also receiving Ipi treatments.    Sounds like this could make it safer for c-kit melanoma people to receive Ipi.

Researchers Discover Potential New Treatment for Colitis     -     Oct. 23, 2013

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

flvermonter's picture
Replies 3
Last reply 10/26/2013 - 9:28am
Replies by: flvermonter, Tina D, Anonymous


My husband's PETscan was no metastic melanoma.  However, he had some chest pains and in the hospital he is.  They found he was anemic and did a endoscopy.  They found a couple of veins that were bleeding and took care of those.  HOWEVER, they found a growth on the samll intestine and did a biopsy.  I had forgotten that the PETScan does not show any growth below 4mm, or that not active.  (I think)

I was so looking forward to no melanoma for awhile, but we may have to handle this again.



Hugs to all, patients and care givers.

Login or register to post replies.