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
peppi's picture
Replies 2
Last reply 9/19/2015 - 2:19pm
Replies by: peppi, vivian

I have both Lupus and Melanoma and am finding it difficult ot find treatment options other then surgery as my oncologists will not give me immunotherapy due to the Lupus. Does any one know of other treatment options or trials for those with both Lupus and Melanoma? I am stage iv with my 2nd wide excision on July 11th 2015. My treatment plan is to repeat ct in two weeks with close monitor. I had mets to one node under my right armpit. The idea of monitor and wait to see is not comforting. Any suggestions?


Login or register to post replies.

mikvahnrose's picture
Replies 4
Last reply 9/19/2015 - 1:52am
Replies by: Anonymous, mikvahnrose, sbrooks90, Janner

There's this raised mole that has been on my back for a few years. Never grew in size (2mm) is oval shape but pigment is what bothers me. It's blotchy. Like most of it pink, a few speck of dark brown.

This past week a spot got darker.

I was concerned about it, and one night I was touching the mole and it felt a tad rough. I don't know WHY I decided to do what I did, but for some reason I squeezed it a little bit and then the black spot began to come out? As you see in image, is slightly irritated but that dark spot is like almost out.

Then I brushed my fingers over the spot and it just fell off?? Like, the pigment was under my skin and now it just fell off? Can that even happen??

Sorta distraught as to what or why this happened. I'm gonna get it checked by my derm, last time I went he said it didn't look like anything. I'm just concerned as this past week all this change happened.



Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 9/19/2015 - 1:49am
Replies by: Anonymous, MattF, Karin L, Pekoe

For those of you who have been stage II melanoma 3.2mm(intermediate thickness) and had a neg sentinel nodes what does your doctor do to check lymph node basins? I'm also curious if any of you were stage 1 or 2 and then had recurrence in lymph node and became stage 3 what did that node feel like? My doctor says I have some prominent nodes in my groin where the removed the sentinel node. I know there r many things that cause swollen nodes but have any of you ever had swollen nodes that can be felt about the size of a marble to grape size but hard. Thanks for your input in advance.

Login or register to post replies.

JennerFromIowa's picture
Replies 8
Last reply 9/18/2015 - 9:34pm

Hi everyone.  I haven't been on here for quite some time.  Hope all of you are doing alright and beating the beast.  I've been having some back pain radiating into hip and down my leg.  I have spinal stenosis so that is probably the culprit.  Had an MRI of my hip and all looked fine.  It did show a prominent inguinal lymph node that was borderline in size.  I wouldn't normally think too much about it but this is the hip where I had my WLE and the node basin where I had my Sentinel lymph node dissection and biopsies.  All were clear at that time.  Anyone have a prominent borderline lymph node?  Could use some adviice as to where to go from here.  I don't see my oncologist anymore.  They released me saying it wouldn't come back. We all know they can't determine that.  I was stage IIA with a high mitotic rate 13 years ago.  Thank you so much for any input!

Login or register to post replies.

Dear Patient Community:

I wanted to let you know about  a unique and exciting opportunity with our partner, The Cancer Support Community:

  • Have you or a loved one been affected by melanoma?
  • Would you like to learn more about the risk of melanoma recurrence and have tools to navigate post-treatment survivorship?
  • Would you like to share your experience to help others?
  • Would you like to learn how to become more of an advocate in your own community?

The Cancer Support Community is hosting a two-day inaugural Patient Advocate Summit for people who are at high risk of melanoma recurrence and their caregivers. The Summit will take place in October in Philadelphia, Pennsylvania.  They are seeking approximately 20 volunteers from across the U.S. to participate. The Cancer Support Community will cover volunteer travel, meals and lodging to and from the Summit. If you are interested in participating, please complete the volunteer application at:

If you have any questions, please contact the Cancer Support Community at or call 202-650-5369. This program is in partnership with AIM at Melanoma, Melanoma International Foundation, the Melanoma Research Alliance and Melanoma Research Foundation.

The program is sponsored by Bristol-Myers Squibb. 


Shelby - MRF


Login or register to post replies.

mrsaxde's picture
Replies 15
Last reply 9/18/2015 - 3:49pm

I saw my oncologist, Dr. Melnyk, this morning. She went over the finding from the CT scan I had done on Tuesday. I couldn't have asked for much better results.

I've had three cycles of Keytruda. We noticed some changes for the better in some spots on my skin after just the first infusion. The CT scan confirms that things are moving in the right direction. Here are the most important parts of the radiologist's report:

"Previous studies have shown several nodules in the right lung. The largest of these is in the right lower lobe. This nodule was not demonstrated on a chest CT dated 1/6/2014. On a PET/CT dated 2/20/2015 the nodule measured 7.9 mm. In May this nodule mesaured 7.1 x 4.8 mm. It has now further shown a mild decrease in size, now measuring 5.9 x 3.5 mm. Other nodules in the right lung described on the previous examination in May are again seen on images 89 and 110. These also appear slightly smaller than on the previous study. There are no other lung nodules.

1. 3 subcentimeter nodules in the right lung described on studies from earlier this year appear to be slowly decreasing in size.

2. There has been a significant decrease in size of a previously described hypermetabolic cutaneous nodule involving the left chest wall posteriorly."

This is turning out to be a very good day. :-)


Login or register to post replies.

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!


Login or register to post replies.

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

Login or register to post replies.

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.

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. 

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.

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? 


Login or register to post replies.

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.


Login or register to post replies.

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


Login or register to post replies.

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.


Login or register to post replies.