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
Bruce Davis's picture
Replies 7
Last reply 9/18/2015 - 7:05am
Replies by: Anonymous, DZnDef, uccio2014, mrsaxde, JakeinNY, Jubes

Feel fortunate to have passed 4 years on Vemurafenib. I've had it easy compared to most who post here.

My heart goes out to those who are struggling.

Bruce Davis

Presently it's "Don't give up."

Login or register to post replies.

jamieth29's picture
Replies 4
Last reply 9/15/2015 - 12:59pm

Just wanted to give a update. I have been on the braf drugs for 6 weeks and they seem to have done there job. All of the spots have shrunk to tiny black dots. I saw Dr Luke on sept 8th and he told me the black spots are dead melanoma cells. He said when they die they leave the black pigment behind. All the spots were shrinking after 3 days of starting the drugs. I have a ct on thursday to see if the one 18mm node that showed on my last pet has shrunk also. I now will meet with the surgeon on the 29th to go over surgical plan. I know braf drugs most likely work for only a median of 10-11 months. My question is if these are dead cells and if one spot gets missed in the surgery is the short time i was on braf enough to keep spots from coming back? Not sure anyone can answer that but one of the questions i had. The long term plan is surgery to get lymph node and resection of in transit spots then recover and hopefully start some type of immunotherapy, Not sure what one yet. They are now offering the expanded excess trial of ipi/nivo at uw madison which is pretty close to me. But not sure how this is going to all play out if I'm rendered ned after surgery I dont think I'm eligable for that. If not I'm hoping to start a pd1. We'll see...I'll keep updating this thread.

Login or register to post replies.

surreygirl's picture
Replies 4
Last reply 9/17/2015 - 7:49pm
Replies by: ET-SF, surreygirl, jamieth29

Sorry for the second post, but does anyone know which is the best treatment to have if I have to have treatment! I beleive Immunology is the best but any paricular one!! Any advise would be gratefully received.

Login or register to post replies.

surreygirl's picture
Replies 4
Last reply 9/16/2015 - 3:39pm
Replies by: stars, ET-SF, casagrayson, CHD

I am going to see the Oncologist tomorrow, but I have been able to view my results on the web because I can access my medical reports on line with a "key" and it says MM site unspecified. Any ideas as to what that means, obvioulsy it is not "in situ" which I had hoped it is also 172.9, well I think that, that does mean "site unspecified"

Login or register to post replies.

Rita and Charles's picture
Replies 2
Last reply 9/22/2015 - 8:23pm
Replies by: wasserd, marta010

Hey there, my husband has been having great results on the braf combo trametinib/tafinlar - from his June PET to his late August CT, his lung tuomor shrunk by half, lymph nodes regressed and no new tumors in his lung. Yay!  Recently though his left ey has gone completely fuzzy, he can't see out of it.  After going to his opthamologist today he learned he as Iritus - evidently 1% of people have eye side effects.

He has been prescribed a steroid eye drop, we haven't heard from his oncologist yet if this will in anyway affect his tafinlar usage. We don't want to stop or stall using the combo - it is working.

Any similar findings out there??

Thanks, Rita


Login or register to post replies.

michaelinsocal's picture
Replies 4
Last reply 9/16/2015 - 12:29am
Replies by: Patina, Anonymous

I wrote a separate topic requesting recommendations for a local melanoma specialist in Southern California. The two names that came up repeatedly were Dr Steven O'Day and Dr Michael Wong. My loving wife researched both and came across  a bit of shocking news about Dr O'Day.

As of 2014 he had his certification suspended and he was put on 3 years probation by the California Medical board for abuse of controlled substances. There were other numerous allegations against him dating back to 2011. Complaints were filed against him at his former work location at the Los Angeles cancer clinic which led to him being terminated. 

For anyone who were/is or considering becoming a patient of his I highly recommend  doing your own background check on him. A simple google search of Dr Steven O'Day and probation will return the doctrine and legal case filed in California. It is also outlined on his professional profile at health 

I hate to report such findings as Doctors who specialize in our area of cancer are hard to find but if rather find one that I can have a trusting relationship with then one with a not so good past.


As a side note, I'm chosen Dr Michael Wong. I'm planning on calling him this week to setup an appointment to go over my treatment history and my 2nd annual scans which I just took last Friday. So far in my wife and I research, he has a sparkling resume and is very active in research and treatment of Melanoma.

Again, thank you all who responded and offered your recommendations. The better we're informed, the better we can chose the right path to a long and healthy life.



Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 9/16/2015 - 12:51pm
Replies by: ET-SF, Anonymous, lmhl

My son was dxd in Jan of 2005 stage 3 melanoma, age 21 . Started on top of his head. Lymph glands were involved in right side of neck. He had modified radical neck disection, then a couple of months of GMCFS, another MRND,  radiation to head and neck, 1 month high dose interferon, then 11 months of low dose interferon. He has been NED since 2006. Today as he turned his head I noticed a small lump on his jaw line, same side as melanoma in lymph glands. Are there lymph glands along the jaw bone? He just last week saw his derm, & has been to the dentist within last 3 months and has x-rays on his teeth. How long should he watch and wait? Then where does he go to have it checked, oral sugeon, surgeon who did his neck disection, ENT, oncologist, dermatologist?  I am more then a little concerned!


Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 9/12/2015 - 4:45pm
Replies by: Anonymous

Brief history: 3b amelonotic, positive ulceration, mitotic 18++! . I chose watch and wait, what am I waiting for??  A few inconclusive lymph node biopsies. Now what? I have what feels like a lypoma on my forearm of my effected side, is this what I'm waiting for or is this just part of the 40 pounds I've gained ? Really what am I waiting for, lumps or bumps, I found lump before and surgeon laughed it off, so really what am I waiting for

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 9/12/2015 - 11:58pm
Replies by: stars, ET-SF, Julie in SoCal

I don't want to go to the doctor... Please tell me if they are common moles or melanomas. Thank you! - you can zoom in to see it more clearly

Login or register to post replies.

davidstewart's picture
Replies 4
Last reply 9/13/2015 - 12:46pm
Replies by: kylez, Mat, arthurjedi007, Anonymous

I know it is case by case but is there a rule of thumb?

I was diagnosed with metastatic melanoma August 31. We got in quickly to see the expert at UNC Chapel Hill. We have been encouraged to get a second opinion rather than rush into whatever is offered initially for treatment and I wanted to explore possible clinical trials. So we decided on M.D. Anderson (either of the two Dr. Hwu's). I learned on Friday that it may be 3 to 4 weeks before I can be seen. I asked my local expert to intervene but realistically there is little he can do.

Having to wait so long definitely ups the anxiety even though we have been told that three weeks is not unreasonable. Anyone have any words of wisdom that will help us sort this out?


Thanks, David

Login or register to post replies.

ET-SF's picture
Replies 8
Last reply 9/16/2015 - 12:52pm
Replies by: ET-SF, Never Gonna Stop, tschmith, Anonymous, mrsaxde

Hi everyone,

ET and I have been discussing the future treatments she may need to undergo, now that she has been formally staged at IIIb.  We understand she is at about a 50% risk of recurrence, and we know that systemic treatments can be insanely expensive.  Our discussion quickly turned to our inate distrust of insurance companies, with memories of how they have screwed us in the past.  Of course that was then, and this is now.  I believe the Affordable Care Act gives us a lot of protections we didn't have.

My question to all of you is this:  What sorts of insurance snags might we expect when the insurance company receives a six-figure bill for some treatment?  (I bet someone has written a cancer patients' guide to dealing with insurance.)  Do insurance companies dictate which treatments you may and may not receive (or at least get reimbursed for)?  Do they have policies we should look out for, such as the maximum number of rounds of some immunotherapy you can take (or be reimbursed for)?  Or are they truly on the hook to pay for whatever we need, over and above our maximum out-of-pocket expense?

And what happens when an insurance company breaks the law to avoid paying?  (We've experienced this with life insurance:  Someone dies, and they're supposed to pay... but they refuse... for no reason they can cite....  so we have to take legal action to collect.)


ET and SF

Login or register to post replies.

BuzzBrown's picture
Replies 4
Last reply 9/16/2015 - 5:10pm

I recently had melanoma surgery on my forehead. They did a wide excision and removed a few lymph nodes. My surgeon thought we would get results within a day or two. I am now nine days post surgery and still awaiting results. Is this a normal time frame for results?

Login or register to post replies.

JimsWife's picture
Replies 10
Last reply 9/14/2015 - 3:47pm
Replies by: marta010, Anonymous, Bubbles, casagrayson, JimsWife, ET-SF, khubes

Hello all,

It has been sometime since I've posted but am in a time crunch to make treatment decisions. I am hoping to get some feedback on any experience or thoughts from this very educated group.

Backstory: My husband Jim, 35, primary diagnosis 2007 mole on head, nothing until December 2014 where he presented with headaches and subsequently found innumberable brain tumors, a couple on his lungs and spine; Stage 4 M1c, BRAF and PTEN positive. Did SRS on on largest brian, then WBR alongside Temodar in January/Feburary '15. Started Tafinlar/Mekinist combo with Temodar in March with steroids on and off, and have been on this until present. He had 2 convulsion type seziures, one in April and another in July, put on Keppra. He has a terrible left leg limp due to largest brain tumor on his right side.

He displayed stroke like symptoms Tuesday morning and was admitted to the hospital for tests. Found new brain lesions and determined he had focal seziure. He was getting ready to be discharged and then had a terrible episode where he did not make sense, could not understand commands or answer questions, or knew his family. It took almost 12 hours to get over this and still was not 100% in speech. It was determined he had another focal seziure and has another terrible one where had convulsions and speech/communcation issue again on Thursday evening. He is completely weak, unable to walk, can barely feed himself, is alert but memory is shot, not even knowing the age of his 9 week old daugther or what happened on 9/11 although he is a combat veteran, having served in Iraq and Afghanistan.

His Dr. at MD Anderson communcates with his oncologist here in Louisville, KY and they've determined they want to possibly do SRS on largest brain lesions, wait a little time, then do Keytruda along with Tafinlar/Mek combo, but said if no improvement after 2 doses, that is all they can do for him. Drs believe there is a little to no hope on Keytruda working because of the steriods he is on. However, he is not in a place to stop steriods but possibly wean down.

I am nervous to pursue SRS,as his brain is already completely taxed and inflammed. I am so concerned for his quality of life, what I should do, if he will make it to see Christmas, etc. Thoughts anyone?


Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 9/15/2015 - 2:51pm

I am wondering what is the hospital stay duration and recovery time (e.g., able to do a household activities) after these two procedures. Thanks. 

Login or register to post replies.

phr's picture
Replies 2
Last reply 9/11/2015 - 7:19pm
Replies by: phr, CHD

Hi all, I was diagnosed with melanoma from a mole I spotted in the middle of my back last month. I had had a complete check (all clear) last October by my dermatologist. So it must not have been there in October. SHe removed it , stitched it up and sent it off for a biopsy. Here are the details:      

It is 1mm deep, but only on part of it.  They call this an “Intermediate” depth. It had an in situ component on the remainder. There were no ulcerations present. THere was no mitosis identified. Histology showed superficial spreading (i.e. spreading more on surface than internally).

All of the above are my notes from the followup visit to the derm. The derm referred me to a plastic surgeon at Yale New Haven who specializes in cancer surgery. They want him to cut more out, to make sure there werent any stray cells outside of the area (get a bigger "margin"). Not recommending adjuvant therapy now. The dermatologist is deferring to the surgeon on whether to do a sentinel node biopsy; they seem to think it is on the margin. 

I guess one question from those who've been through it is, if I am on the margin of whether to do a sentinel node biopsy, should I push for it? The derm says no, trust the surgeon, he'e the best and  if he thought i didnt need one, I don't need one. I have read many stories of recurrence, and so it seems to me that with a node biopsy, I could rest a little more compftably going forward. I have great insurance so cost wont be an issue.

I am surprised I am not more freaked out. I am a pretty calm person, and I realize that while this is cancer, it sounds like i got it early and (subject to what the surgeon says ) I am fortunate relative to many others. I feel grateful. And I'd like to hear any thoughts, particularly opinions on whether to push for a SLNB.



Login or register to post replies.