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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michaelinsocal's picture
Replies 3
Last reply 9/18/2015 - 3:43pm

Dx Nov 2013 stage 3A

Second annual scan results in..... I'm happy to report NED. I am blessed. 

The one thing I wasn't happy about is that the doctor only ordered a CT of my pelvic and chest. I wanted a full body, especially the head. I'm sure my DR is following guidelines but those are often influenced by Insurance companies. The thinking behind the decision to scan only the pelvic/chest is since my primary was on my outer left foot, if there was progression it would appear first somewhere chest down. That's not always the case as I've read.

For now, I'm going to count my lucky stars. I will follow up with Dr Michael Wong at USC for a full review of treatment and scans so far.

Keep the faith!


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Hi all,

Since the MRF’s website redesign in late 2013, we have continued to explore ways to make and MPIP more efficient and user-friendly for the online melanoma community. We appreciate the feedback many of you have provided over the years!

Because the “Off-Topic Forum” receives very little traffic and there continues to be a very active and engaged community on the 'regular' MPIP forum, we will be removing the Off-Topic Forum from the website by October 16, 2015. As part of this change, we will redirect people to the MPIP community. We believe the few individuals who have posted melanoma-related questions in the Off-Topic Forum will appreciate being redirected to MPIP and will receive better support and information.

Let us know if you have any questions!

Shelby - MRF

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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."

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Christine.P's picture
Replies 5
Last reply 9/17/2015 - 11:52pm

I recently had two malignant melanomas removed, a SLN biopsy in my right groin, and what turned out to be a full dissection of the lymph nodes under my left arm. This was intended to be a biopsy as well, but as soon as they got in, they could see the cancer had spread. In addition, the melanoma on my leg was large and deep enough that I needed a skin graft. I am currently stage 3 but waiting to do an MRI and PET scan once I heal more from the surgeries

My question is this. How have others who have had the full dissection under an arm recover from it? My arm is part numb and part "prickly" - as if my arm was asleep and is waking up to pins and needles. The surgeou says it "might" get better - but it may not. It drives me crazy

Is there somethng I can do to ease the discomfort of the numbness and tingling? . 

Christine P. 

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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.

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Millykamp's picture
Replies 5
Last reply 9/17/2015 - 6:53pm


home resting after my WLE and SLN surgery...    They only remove one sentinel lymph node...  So is that a good sign? 


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Julie in SoCal's picture
Replies 2
Last reply 9/17/2015 - 11:36am
Replies by: KimW, Scooby123

Greetings Friends!

Just wanted to let you know that my last scans came out all fine.  No problems whatsoever!  However, a new piece of funk (in transit met) has popped up in same lymph node basin as all the others.  It is very, very small (smaller than a split pea), and it's possible that we just didn't see it before and it is slow to respond to Pembro.  But it's also possible, highly likely, that it has come up and is not responding, or slowly responding.  Of course this discovery moves me once again from complete responder to partial responder, and now no longer NERD - No Evidence of Recurrent Disease.
I'm disappointed, but not surprised; this is my fourth recurrence.  So the plan is to watch this sucker, keep track of it and see if it's just slowly going away (and we missed it before- it is very, very small) or if it is a new and unresponsive met.  And gratefully, this really doesn't change anything in the short term.  I'll continue Pembro treatment for at least another 8 infusions unless something drastically chances with the stupid intransit, or it becomes obvious that Pembro has stopped working.


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ET-SF's picture
Replies 10
Last reply 9/17/2015 - 10:25am

Hi all,

Good news!  The path reports have come back, and it appears ET dodged a bullet for now.  Her SLN biopsy came back negative, and the WAE margins were confirmed clean.  We still haven't gotten to the PET/CT full body scan, which has to be ordered up by an oncologist.  We don't even have an oncologist yet, but we're trying to set up wit the ONLY melanoma specialist/program/clinic on our insurance plan.  Meanwhile, we're wrapping our heads around some big questions.  Among these....

INTERFERON THERAPY!  Considering the size of the tumor (Breslow 9mm) and other findings of the initial path (microsatellitosis, lymphatic invasion, perineural invasion), I think ET would qualify.  There's also a Phase III clinical trial for a multi-antigen vaccine, but I can't find info as to its efficacy so far, and ET could end up in the control group, getting nothing.  Interferon would be something she'd be guaranteed to receive, with limited improvement of her odds.  My question to all of you who have undergone this therapy is...

Would you do it again?

Or would you take a stab at the vaccine trial, knowing that you might end up in the control group?

(I believe it's either/or, as interferon would disqualify a person for the vaccine trial.)

Thanks for any input/insight you can offer!

SF and ET


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arthurjedi007's picture
Replies 19
Last reply 9/17/2015 - 12:39am

I see Dr Adi Diab this Friday at md anderson. From what I read he seems like he should be an ok doc and has lots of experience at Msk.

I was wondering if anyone knows what to expect there? I assume they'll have several systemic treatments in mind. I know they have the pd1 combo I almost started in Nashville and til of course plus who knows what else.

Im also wondering what if anything they do for specific tumors that are at the crossroads of becoming somewhat critical? For example I found out last week I have a baseball size tumor in each kidney but the blood work shows my kidneys are ok for now. That's really the main reason I switched to go here instead of Nashville. I know others are worse off and it may be selfish but I would like to keep my kidneys while there is the chance to do so. Surgery, internal radiation, embolism, ablation, external radiation are some of the things I'm aware that could be done. Here in saint Louis they don't want to do anything because the kidneys are functioning fine for now.

Also there's always the ever present need to keep an eye on my spine to make sure there's no narrowing of the spinal canal again. Also the keeping an eye on the 3cm ish tumor pressing on my brain.

So I dunno. We'll be staying at their hotel although they are doing renovations. I'm also getting mentally prepared to just rent a place there to stay long term. I also chose mda over Msk because the winter should be more mild than ny assuming I'm still plugging along then. I hope so. I have a new Star Wars movie to watch in December. But thoughts of Jerry Ellis sure bring it home that this disease can get even the smartest and toughest.


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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?

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mkirkland's picture
Replies 16
Last reply 9/16/2015 - 4:33pm

Hi - I have stage 3 nodular melanoma. I am scheduled for lymph node dissection of the right groin this Friday along with another wide excision in my foot. Any tips on an easier recovery? Pretty nervous about the pain and down time.

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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"

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pmeyers's picture
Replies 2
Last reply 9/16/2015 - 3:37pm
Replies by: Bubbles, Jubes

My mom was diagnosed with stage 4 melanoma at the end of August. Most of the tumors are in her liver and lungs and one behind her left eye. 

She received her first dose of Keytruda about 10 days ago. She went home from the hospital two days after receving the treatment but went back into the hospital 3 days later with severe abdominal pain. They were able to manage the pain but she has grown very weak and now needs oxygen to help her breath.

The doctors aren't sure if it is a reaction to the treatment - if so it seems quite severe and sudden - or just the cancer getting more aggressive. The doctors want to get her well enough to receive her next dose of Keytruda the end of next week. 

Does anyone know if her worsening condition could be related to the Keytruda? I'm trying to remain hopeful that it could just be getting worse before it gets better?


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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

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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!


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