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
Gene_S's picture
Replies 1
Last reply 5/19/2014 - 8:57am
Replies by: Anonymous

By a News Reporter-Staff News Editor at Cancer Weekly -- In a groundbreaking effort, 3,500 of the country's top high school students will build the world's largest wiki on melanoma research -- and work toward finding that needle in a haystack to cure melanoma (see also National Academy of Future Physicians and Medical Scientists).

The effort is led by ,which will use crowdsourcing to drive user-generated content related to melanoma cancer research to a wiki site. "The idea is to bypass mainstream medicine and medical research and compile fresh ideas," said Jordan Guernsey, the 29-year-old father of two and Stage IV cancer survivor who is the force behind SaveJordan. …



Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

ray39's picture
Replies 6
Last reply 5/19/2014 - 10:12am
Replies by: ray39, Anonymous, Kim K

The more I read my path report the most questions I have, so here is the complete report:


Cooment:Lateral and deep edges are positive for neoplasm.  The histologicdifferetial diagnosis may include a compound dysplastic melanocytic nevus with severe atypia, however, an early melanoma (0.4 mm in depth) cannot be excluded in these sections.  Re excision is suggested in order to perform additional histologic analysis and ensure the prolifieration has been removed moved from the patient.


I had the wide excision Tuesday and been reading this over and over and l\lateral and deep edges being positive for neoplasm is freaking me out.  The doctor said this was a "soft call" of no melanoma but they they wanted to treat it like an early melanoma?



Login or register to post replies.

Short review:


July 2010 dysplastic nevi left calf

derm exams every 6 months

July 2013 bump lower left calf and enlarged left groin lymph node

August 2013 diagnosed stage 3c, groin lymphadenectomy 

October 2013 - December 2013 ipi Tx 4 cycles total (colitis treated with prednisone and 2 doses remicade)

Ringing in ears. brain MRI clear. February 2014

CT clear jan 2014

April 2014 PET show high SUVs calf , groin and stomach 

April 2014 Endoscopy with biopsy reveals 3.5 cm lesion in stomach that is melanoma

Meet with teams at mskcc and penn. Decide on BMS anti-pd1 and KIR trial.  To be begin this weds may 21st

My Question?

if husband fails trial, would he be eligible for expanded access MK3475? If you were ever on a Merck 3475 trial that would exclude you but would a BMS trial exclude you?

Lastly, when do you think the FDA will approved Anti pd 1?


thanks in advance. Anxious to get treatment moving but don't want to make the wrong move. 



Login or register to post replies.

SamC 23's picture
Replies 8
Last reply 5/19/2014 - 10:14pm

Hello everyone,

I was diagnosed with Melanoma back in March 2011. Surgery was performed to remove it from my back along with a sentinel node from my right armpit.

I 've had two CT scans in two months. The first one indicated a nodule on the lower left lung measuring 15x11. Second scan showed it grew to 28x14. I'm a little nervous for what is about to happen in the next few weeks.... Thank you 

Login or register to post replies.

ErikaHouston2's picture
Replies 4
Last reply 5/19/2014 - 11:45pm

I was just recently diagnosed with Crohn's disease. Curious if anyone else here has experience with both melanoma and crohn's or IBD? My melanoma was early (Stage I, .65MM), but the treatments for the Crohn's disease do concern me since they are all immune system suppressing (steroids, Humira, Remicade, etc). 

Some of you may recall MD Anderson running a bunch of tests as they were concerned that my two severe GI bleeds (hospitalized/transfused) were somehow melanoma related. While Crohn's is not a peach, I'll take this diagnosis over melanoma metastisis any day.  It was very nice to have MD Anderson tell me they wouldn't treat me for this :-).

My Crohn's GI specialist is aware of my melanoma history and the complications for treatment of the Crohn's. She has started me on a mild steroid - Entocort.


Login or register to post replies.

hannahcopeland1's picture
Replies 33
Last reply 5/20/2014 - 9:11am

Has anyone taken the chemo temodar? I am specifically taking it via infusion for 5 days ( but I kno you can also take it orally) with a regular dose of ipi and 10 days of full brain radiation. Apparently temodar can get to the brain so they decided to add it to my treatment because of my situation. 

Recently they found leptomeningeal disease in my brain, so basically there is melanoma in the tissue surrounding and protecting my brain and spinal chord.hasnt gotten to the spinal fluid yet which is good, but they did find two small lesions on the bone of my lower lumbar spine :( it's pretty darn serious and I was kicked out of the PD-1 trial I was to start the next week.

So plan B is just trying to be aggressive, hense my agreement to do chemo. I thought I'd be able to skip that stuff, but you can't always get what you want. I've done 4 out on5 infusions so far and haven't noticed many changes, but I kno that side effects often take time to kick in.

i really dontknow what to expect and am not knowledgeable about chemo (temodar especially) and how to take care of myself while on it. My doctors have not been very informative on the subjuct. When they handed me a mask the other day just to walk outside I was very surprised and when I got to see my 2 year old niece 6felt scared to touch or to hold her.

will I lose my hair? When?

i feel ignorant, which I try to avoid when it comes to my health.

Anyone experienced this particular drug and want share some knowledge with me?


Thanks for listening


Hannah Copeland

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 5/20/2014 - 9:35am
Replies by: ecc26

Expanded Access Program With Nivolumab for Subjects With Histologically Confirmed Stage III (Unresectable) or Stage IV Melanoma Progressing Post Prior Systemic Treatment Containing an Anti_CTLA-4 Monoclonal Antibody

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Login or register to post replies.

OzzieK's picture
Replies 11
Last reply 5/20/2014 - 2:48pm

This board has provided a wealth of information. THANK YOU to all of those that support and educate!

Very brief background: My dad had 4.9mm nodular diagnosed in January, WLE and complete axillary node dissection under left arm (8 of 48 with melanoma). He has had 2 local recurrences since, with the first one removed surgically. The second one is growing on the outside of his WLE scar (from 1st local recurrence) and he has a couple of very small mets in the tissue in the same general area. Organs are clean thus far.

His specialist doc (O'Day from Bevery Hills Cancer Center) started him on Yervoy on Friday and does not believe surgery is necessary/helpful at this time. He wants to see how the mets respond and then, depending on how things go, may continue with the full 4 doses of Yervoy or switch to PD1 expanded access.

My mom spoke with a general surgeon friend and he insists that the mets need to be removed if they can be. Dr. O'Day feels differently and wants us to trust his judgement. We do and understand his reasoning, but can't help but have some doubt about just leaving the mets there indefinitely and risking them growing and spreading further. After all, surgical removed is or used to be best practice right??

Anyone else have a similar experience? Could really used some insight.

Thank you in advance!

Login or register to post replies.

ncdaniel's picture
Replies 1
Last reply 5/20/2014 - 3:09pm
Replies by: Janet Lee

Has anyone had WBR more than once? I know at time this is done but has anyone had experience with a second WBRt?  My wife currently has to small spots 5mm and 7mm plus. Numerous small spots. The current response from medical treatment is wait 4 weeks for new MRI and then plan treatment based on results. This plan makes sense as there is questions on what small spots will do.  My interest is has a second treatment of WBRT had any significant effects. while our med team has not reccomended WBR I am thinking this could be a possibility.  She has already had gamma knife in September followed by WRBt at that time. No issues until last week.



Trust in God - Live one day at a time

Login or register to post replies.

Janet Lee's picture
Replies 4
Last reply 5/20/2014 - 3:26pm
Replies by: Janet Lee, jonakeefe, Jme, BrianP

It's been awhile since I've posted, and not necessarily because "no news is good news." Don's Stage IV Diagnosis was only 16 months ago, out of nowhere and no primary, and what a ride it's been. After brain mets, cyberknife, brain surgery, SRS, and other various complications, his response to Zelboraf was questionable and short-lived (he is V600R, a relatively rare form of the BRAF mutation). Then he had a positive response to IPI according to his doctor (completed last August), but since then has had multiple growths in his abdominal area. Surgery in October and then another surgery last month to remove pelvic-area masses, two rounds of radiation in between for other mets. And these are just the highlights. He's down at least 75 pounds (he could have afforded losing maybe 30 of those 75 pounds) and is quite weak.

He, like so many, has been waiting for the PD1, always missing qualifying for a trial for one reason or another. We were informed yesterday that the PD1 is now available at Mass General (where he is treated) through the EAP program. The only requirement this time is that he cannot start the PD1 until 28 days after his last surgery. We have 1 1/2 weeks more to wait.

In the meantime, his doctor has started him on the Taflinar/MEK combo. Since Don did have something of a response to the Zelboraf about a year ago, his doctors felt this might help in the short-term. First dose was last night. Incidentally, some of you may remember that we had to stage an all-out campaign to get the Zelboraf approved, since he was V600R and not V600E. It took us months. This time, the Taflinar/MEK was also denied, but it only took a week for MGH to appeal it. So I hope this is good news for others who may be BRAF-postive but not with the V600E.

Our granddaughter, Cecilia, is already 5 months old and is quite the charmer! We are really looking forward to a wonderful summer with her.

I continue to be inspired and kept hopeful by most of the people and posts on this forum. My warmest thoughts are with all the Melanoma Warriors and their families. This is quite a war that I never thought we would be waging, but the knowledge and hope gleaned from this website helps keep us focused and positive.

Janet Lee

Login or register to post replies.

aldakota22's picture
Replies 30
Last reply 5/20/2014 - 3:32pm

Results of brain MRI & docs visit not very good from 01/15/14. Told to get affairs in order.Not words anyone really wants to hear who has mel stage 4.Melanoma has traveled to the brain but not as tumors but as mel cells into the cellephane wrapper around it.Meaning WBR would not be of any use cause there will be mel cells in the spinal cord that would only get back in.The thing I am fighting with is the addition of a Mekinist drug with the Tafinlar drug .Dual treatment was just approved this 01/08/14/.Praying that this works.Still have high PMA and faith in healing miracles.Will see Dr Pavlick on 01/29 than brain MRI last week of Feb.Still feel really fine.Major problem is constpation & anything I drink or eat taste really horrible.Force myself to eat.Any ideas of what I should do? Get another opionion or maybe a trial.Appreciate oppions and prayers.We will beat the beast. thanks      aldakota22

Login or register to post replies.

BMS has opened an expanded access protocol for their anti-PD1 drug nivolumab. Details can be found here:

No sites are open yet, but several sites are actively working on opening up this study. Opening a study like this can take some time, with the delay varying considerably from site to site based on their own rules. 

We will provide updates on open sites as soon as we have that information.

The program will be available for patients with Stage IV or unresectable Stage III melanoma, including cutaneous and mucosal melanoma.

Patients must have progressed on Yervoy (ipi) or some other anti-CTLA4 drug. If the patient has a BRAF mutated tumor they must also have progressed on a BRAF inhibitor.

Patients with active brain metastases are excluded. This includes patients with brain mets who are currently in radiation treatment or who are taking steroids following radiation treatment.

The good news is that anti-PD1 therapy will soon be available to more patients. The better news is that we are likely just a few months away from having one or two anti-PD1 drugs approved by the FDA.


Login or register to post replies.