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
MelissaCK's picture
Replies 5
Last reply 6/29/2016 - 8:19pm

Hi everyone,

A couple weeks ago I went to the dermatologist for a routine body scan, simply because I hadn't been in awhile. She removed two moles from my back and a few days later called and said they were atypical, and one was pre-melanoma (I think those were her words, my head was sort of spinning at that point). She had me come back in for a larger excision so today I went in and she removed the area of skin surrounding the mole. I wish I could recall the size of both the mole and the incision but at this time I can not (I am planning on requesting the pathology report tomorrow).

I asked if this made it more likely that I would get melanoma and she said that No, it's all gone--that it was just in the mole and surrounding tissue and since it's removed, there is no longer a problem. Is this true, that I am good to go now? Are there instances where they run a report on the surrounding skin and find that there is more cancer and that it's spread? What's been your experience?

I go back in two weeks to get the stitches removed so I am hoping to have more answers then. I was feeling okay about this but the more I read the more I realize this could be bigger than I thought. The doctor was really encouraging and didn't seemed worried about anything, but I'm still worried about potential outcomes. My husband is deployed and closest family is about 4 hours away, so I'm just looking for support from people who have been there before.

Thanks to everyone.


Login or register to post replies.

Chance16's picture
Replies 11
Last reply 6/29/2016 - 9:40am
Replies by: Chance16, jennunicorn, Anonymous, Ed Williams, Gene_S, jvictoria

Hello,  I'm new to the forum.....In May I had my annual skin exam which they found a mole on my left ankle to be positive for melanoma (1.1 mm). In June I had WLE and SNLB; margins were clear but the sentinel node was positive.  My PET/CT scans and MRI were negative for mets to organs but there were some nodes but doc was not concerned and felt good with results.  My surgical oncologists wants to do a CLND which I do not want (no nodes lit up in my left groin). He also said there was no drug therapy for me (Stage 3C). I am going to Moffitt Cancer Center in Tampa for a second opinion.  I would appreciate any thoughts, suggestions or experiences.  Thank you.

Login or register to post replies.

Replies by: geriakt

Hello all... I haven't posted on the forum in a while pretty much because there wasn't much to say while I was on the clinical trial.

First a bit of history...

Original site right thumb, under nail, colorless melanoma, originally misdiagnosed 06/2014, positive diagnosis 05/2015. 06/2015 Distal amputation to remove the primary site, SNB to identify spread, SNB positive, complete disection performed 07/2015.

Began Clinical trial CA209-238 10/2015 CT scans, infusions, etc., etc.

Today... 7 months later, went from no side effects to all side effects for Nivo, trial suspended, put on steroids... next, 2cm nodule near the original SNB site (left elbow) identified plus a 10mm nodule in the left lung.

06/2015 2cm nodule removed, positive; lung biopsy tomorrow

Will keep you all posted on next steps... most probably, Moffitt, NYU and MSK for second opinions on what to do next.



Login or register to post replies.

Aaron's picture
Replies 1
Last reply 7/2/2016 - 3:05pm
Replies by: debwray

So i am sitting here getting my drips and looking over my bloodwork. I see that my red blood cell volume is low again and continues to slightly drop the last three times my bloodwork was taken.  Just curious if anyone else recalls their MCV or MCHC being low.  Granted it is not that low but like I said there seems to be a trend where every time I get bloodwork done it is slightly lower. 

Login or register to post replies.

Kimba67's picture
Replies 6
Last reply 6/30/2016 - 5:53am

I had my surgery Wed, My BF, Sister, and both sets of parents came to support me.  I didn't know if they would operate becasue I was having hypertension issues that could have stopped the process.  I waited one month to have the proceedure and now I have a 7inch scar, 3 inch scar below that and a very sore arm pit. 


I went in for the mapping and boy does that radiation medicine  All I could say was "Dayum"...4 injections and the tech thought the needle was the worse part...HA

I woke up and was ready to go home.  The next couple of days were a little fuzzy, but I was verticle and moving as well as could be expected.  I was standing in line at the store Saturday and this man behind me asked me what happened.  I smiled and told him I was sky didving when I was clipped by a glider.  My mom giggled and he looked at me so strange.  They he said "noooo", I smiled and said "no"...I had cancer removed. 


It's funny how making someone else smile, made three other people smile.  My amazing physician and his team did a great job, He feels he got it all, but now I am waiting on the pathology report from my lymph.  No matter what we go through, we are never alone.  God is good.

Login or register to post replies.

laulamb's picture
Replies 2
Last reply 7/13/2016 - 11:03pm
Replies by: desertsun, Janner

Can someone help me understand what this means?  No mutuations or BRAF?











Login or register to post replies.

Rita and Charles's picture
Replies 7
Last reply 6/29/2016 - 9:38pm

Has anyone experienced patches of their skin turning into white blotches??  Charles' arms and part of chest have now gotton white splotches instead of his normal skin tone.  I assume it is lack of melanon??  Any feedback or experience shared is great, thank you.



Login or register to post replies.

Janner's picture
Replies 7
Last reply 6/30/2016 - 12:23am

I have ignored my website for a long time,  I'm attempting a revamp of the website - moving the domain to in the next month or two.  I'm sure I have many broken links and lots of links need to be updated reflecting more current info.

I am looking for links that have been particularly helpful to you - that may be helpful to others.  My website currently has the categories listed below.  I am willing to add/delete based on input.  And if anyone wants to spend a little time helping me check links and decide which are out to date, I'd appreciate any input!  smiley  I either need to update the site or trash it, and I've decided to give it one more attempt to bring it up to date.  This is only a sideline for me nowadays (and I still have a real job) so INPUT IS WELCOME.

Categories I'm currently using:

Newly Diagnosed
Educational Material
Treatment Options by stage
Patient Perspectives
Lymphatic System
Medical Terminology
Wound Care
Cancer Care
Psychology of Cancer
Cancer Myths
Recurrent Melanoma
Multiple Primaries
Unknown Primaries
Atypical Nevi
Mole Mapping
Melanoma Items
Sideline Issues

Login or register to post replies.

Aaron's picture
Replies 4
Last reply 6/27/2016 - 2:29am
Replies by: MoiraM, geriakt, youngann, Aaron

Tomorrow I go in for my second nivo/ipi combo treatment. So far my side effects have been minimal. I have had two separate days about 8 days apart where I experienced pressure in my lower abdomen, I have had acne onsets where pimples have been appearing, I had two days of a very light rash on my forearms, and strangely I have experienced some sort of immunity to my allergies. 

Previously I was experiencing a feeling of the onset of sciatica but this has largely subsided to where I now feel like I need my lower back popped or sometimes it is unnoticeable altogether. 

I am anxious for my first scan to see if/what my results are. I realize I have some time before that but it is still in the back of my mind.  

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 6/27/2016 - 2:35am
Replies by: MoiraM, Anonymous, Jennab0525

I noticed in about a month ago or so. The last 2 weeks I've been itching in that spot quote a lot and it's starting to concern me. It's under 2mm I think.

Here's a picture

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 6/26/2016 - 3:16pm
Replies by: Janner

I was wondering what the criteria is for this syndrome? I  have a good amount of moles, probably 150 of them but most of them are tiny. Some of them look irregular but that's just the borders.  I have been seen by several dermatologists and none of them ever mentioned the syndrome.  I did have one low grade atypical mole removed but that was it. 

Login or register to post replies.

ecc26's picture
Replies 16
Last reply 7/7/2016 - 10:31pm

With Roswell Park's relatively new frameless Gamma Knife system, they treated 19 brain mets over the course of about 2 hrs. I have to say, having had 4 procedures with the frame, I can't imagine why anyone would choose that method- I have permanent dents in my skull and each time when the frame came off it took me a long time and a lot of medication to get over what I can only describe as the worst migrane you can possibly imagine (nausea and vomiting inclued) despite some pretty significant pain medication intened to combat that.

I had to get up about half way through because my back doesn't appreciate being in that position and not moving, but so much better, and for anyone that doesn't have that many mets, I expect it would be much easier. They said there was only one other person who had had as long a treatment as I had- drove up from NYC specifically for the frame free for the same reason I was so happy it was available- many mets and many previous treatments. Personal choice, but I am certainly glad I had the frame free option.

Otherwise, starting today steroids are being reduced, though I'll keep the Keppra for a few more weeks. First infusion of the combo Monday morning, so we'll see how that goes, but very happy to have something done about the brain mets. Always worked well for me in the past, hoping it does this time as well.

Good luck to all of you who are in the midst of, or just starting your fight. Please try and take some comfort in the fact that I've been fighting since 2011, have had whole brain radiation and now 5 rounds of Gamma Knife in addition to every FDA approved treatment (one right after the other- often as they became approved). I've never had an any time since the start where I was "in remission" or even "stable" and off meds, but I'm still going. It took me a very long time to come to terms with my disease and be comfortable enough to talk about it with anyone, so you will not get any judgement from me as far as how you come to terms, or what you share/when or what decisions you make for yourself regarding treatment.

I am well aware that every person and their case is different and I've been lucky, but keep fighting, keep looking for the next thing. It's ok to be upset and confused and feel down for a while with new diagnoses and setbacks, just don't stay stuck there. Use this forum, and any other support systems you can fine and lean on them to help keep you going, but don't give up. It's hard, but keep going, get yourself as much time as possible and don't look back and say "I wish..." or "I should have...", just keep looking forward, even when it's hard. We all have a good reason to fight- find that and keep going.


Login or register to post replies.

I am 47 years old; mother of 3; my youngest being almost 8 years old. Just looking for advice from anyone who is undergoing targeted therapy ( Zelboraf & Cotellic). I am Stage January my yearly scan showed 2 masses in my leg where the cancer originated in 2006. Between January and now, shortly after starting immunotherapy, which I had to stop after 2 infusions because of elevated liver studies, the cancer spread to my right kidney. A month after spreading to my kidney, it spread to my stomach. I finally was given the go ahead to start the targeted therapy....had to wait for liver studies to be normal again.....which seemed like it took an eternity! Now I'm scared to death that that I'm going to eventually have to stop this treatment if my liver studies become elevated again. Any suggestions on how to get your liver to cooperate with the meds? I'm trying to eat as healthy as possible but if anyone else is going through the same treatment, I would love to hear from you. Even if it's to compare side effects. Right now I'm going into my second week and nausea and some vomitting have been my main side effects; along with extreme fatigue. This morning, however I woke up with the raised, red rash that's super itchy under both armpits and on my kneecaps. Everything I've read so far is the oatmeal baths help the best. Anxious to hear from someone....I feel very alone in all of this...even though I'm constantly surrounded by family members who want to help. I just know I would feel so much better to connect with others who are going through what I'm going through. Hope to hear from someone soon! 

Login or register to post replies.

Ajwells's picture
Replies 5
Last reply 6/29/2016 - 9:54pm
Replies by: landlover, kathycmc, Gene_S, desertsun, Anonymous

I know that some temporary nerve damage was going to happen, and the risk for permanent was there. I'm just a little surprised about some of the things that were affected. 

My neck dissection was Monday.  Boy was that a lot worse than I had originally expected. Large incision down my neck, about 10 inches from my ear to my collar bone.  

They took out 27 lymph nodes. And I should probably note that my labs came back CLEAR!!  Not a single little node had any cancer in them!  So no more surgery and I'll be ready for immunotherapy once I'm all healed up!  

But back to the point.  I woke up from the surgery with very little control over the left side of my face. Doctors weren't worried about the facial paralysis being permanent. Every time they came in they made me make a kissy face and every time they did they were happy with whatever happened. My smile looks like popeye right now. Just the left half of my bottom lip won't move at all. It's really strange.  They did note that the numbness in my left ear is very possibly permanent. They had to peel s lymph node off of that nerve. Of course my neck is stiff. I can't really move it side to side and I can't turn my head to the left at all. It isn't particularly painful, my neck just won't let me turn it.

and now for the weird part.  The range of motion in my left shoulder is terrible. I can't lift it past like 80 degrees up. I can't reach for things. I can't lift it to tie my hair up. I try and stretch and loosen it up, which helps out some, especially right away in the morning.  

My doctor never mentioned the possibility of having to do physical therapy for anything like this, but this seems like the type of thing that would require some. My mom just went through some shoulder surgery and she was having the same range of motion issues I'm having now and she goes twice a week for PT.  

has anyone else dealt with weird spread out nerve damage from surgery? especially in the neck.  

Also one more time: MY LABS WERE CLEAR!!!!!!!  

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

Login or register to post replies.

landlover's picture
Replies 16
Last reply 6/30/2016 - 12:31pm

Hi-  I am currently weighing my options for my stage 3C melanoma which I recently posted about.  One thing that surprised me was my Onc (Dr. Lao U of Michigan) said that he would get scans "every so often" vaguely and stated he'd do a brain MRI about once a year.  That seems too long to go to me.  What are other people experiencing as the standard for stage 3?

I am getting a little overwhlemed by all of the unknows, guessing, worrying, and not great options.  I want to have faith in my doctors and care, but I am worried.


Login or register to post replies.