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
Anonymous's picture
Replies 0

My elderly father was diagnosed with Stage IIB melanoma last October which was treated with a wide excision and removal of 4 lymph nodes around his arm/underarm.  We were told by the surgeon that no trace of the cancer was found in any node or the margins and we were thrilled and no further treatment was ordered.

Unfortunately, fast forward a year later and it appears that he now has several mets to his lung (confirmed via biopsy last week) and, I suspect due to very recent vision changes, mets to his brain.  He is having an MRI of his brain today.  We'll be meeting with his oncologist for the first time on Monday. 

First, I can't believe how quickly this is happening.  Secondly, he is being treated at Memorial Sloan Cancer Center in NYC.  We loved his surgeon, but I'm a little disappointed that he was not assigned to Dr. Wolchok as, at least in my non-medical opinion, he seems to have a very advanced case.  We were told, however, that they wanted us to get the first available appointment, so I guess beggars can't be choosers. 

I'm reaching out partly for some moral support and partly because so many of you have been down this road and know a lot more than I do. 1) What kinds of questions should be asking his onc?  2) what are the possible treatment options? 3) We don't know his BRAF or other gene status yet, but is there a chance that a treatment could buy us some time? 4) Do you think we should waste time getting a second opinion or just go with whatever treatment is recommended by MSKCC.


Login or register to post replies.

Buddy0513's picture
Replies 0

Hello everyone!

It's been a while since I've updated since things have been very hectic with mom.

We started out about 4 weeks ago with carbo/taxol for chemo. A few days after the first infusion her stomach had gone down in size greater than 50%. We saw the doctor and she had lost 8 lbs in one week. The Dr and nurses couldn't believe her response. She has had 3 more infusions of the chemo after that, but only lost 2 lbs since and has been holding steady at her current weight. Her stomach basically isn't hard bloated anymore and is her typical size prior to all of this. She's able to go to the bathroom normally (which Dr originally told us we didn't have time to wait without chemo, the bowel blockage would kill her...) and she can finally lay down in a bed and function by herself. I really don't believe the results myself....

During this time she had her 2nd infusion of ipi/nivo. She really had no side effects of it until this time. 3 days after the ipi/nivo, she became very ill (flu like basically), major joint pains and this redness began to develop. It started small on her neck, a few hours later it was on her leg, the next morning she woke me up in a panic. Her entire body from her neck to her toes was complete red rash. She wasn't really itchy, but was severe red. We called the hospital who told us to come in right away. Having panic attacks and in tears we drove to the hospital. They drew more blood work and we waited.

When our Dr walked in, he took one look at her and said I know this looks bad and you probably think it is...but this is the best thing I could have asked for. Mom and I just sat there. Confused. We didn't understand how a major sunburn skin look was a good thing. The nurse then came in and was all excited as well. She said this is the best news we could have asked for especially since mom showed no other side effects (other than losing hair from chemo...)...

She is currently on steroids to control the rash (Dr said it would go down after first dose...he was right it's basically gone). I'm not entirely sure I understand what's going on...Dr explained her immune system is doing its job and it's basically angry to the point it's attacking on surface now. So I guess we just wait and see. We will be going back first thing next week to see him (he requested we see him Monday which is unusual so we are a bit nervous).

Other than that...Nothing else new to report. Really praying that we get some good news here. I keep seeing stories of people posting how they are responding both to her treatment and keytruda, especially a lot of positive stories lately! Just hoping mom is heading down that path as well.

Thanks for reading! Just wanted to give a quick update :)

Login or register to post replies.


My husband is participating in a clinical trial which includes Keytruda and PEG interferon.  Does anybody have experience with this drug combination?    My husband will bear anything to survive however, I feel it necessary to question interferons effectiveness.  My husband has been sweating profusely since starting the interferon treatment. Is this a normal side effect?  Should we consider omitting or reducing the amount of PEG?

Does anybody have any experience similar or possible information to be shared?  Any input related to PEG interferon and Keytruda combination would be helpful.  

Thanks for the support,


Login or register to post replies.

vickiaa0529's picture
Replies 8
Last reply 10/20/2016 - 3:30pm

Is anyone doing watch and wait after having brain mets 

is not logistically going to work to get to MD Anderson in the next few weeks as my husband is retiring on Friday and we don't won't have a home city to fly out of. Our condo in Seattle got sold and we're in hotels. I was thinking I had two months to get started but my Oncologist said no and said she would suggest close monitoring 



Login or register to post replies.

WithinMySkin's picture
Replies 10
Last reply 10/20/2016 - 12:42pm

Hello fellow fighters! I just got some great news that I wanted to share. Recent PET scan came back clear! I’m suddenly NED! Holy crappola I can’t even believe it. My second (and last) infusion of Ipi/Nivo was waaaay back on May 6th which started the cascade of side effects, steroids, weening, more side effects, and finally that wonderful 3 letter word.

Was the journey worth it?! Absolutely. I’m still dealing with some lymphedema in my leg from the CLND and some lingering endocrine/girlie issues but every day is a blessing. Every day I get to wake up and be grateful for the day ahead. Another day to enjoy the people I love. Another day to make a difference in other people’s lives. Another day to enjoy the life I’ve lived. Another day to dream about tomorrow.

I know everyone on this board has tough days and sometimes it's hard to see the good through all the bad. But there is always tomorrow, and we never know what tomorrow will bring! It may seem miniscule, but tomorrow is the first step in your future. Dream big!! So to help me celebrate my new status (woohoo!) and help your heart smile a little, I want everyone to list what another day means to you. What do you want tomorrow to bring?

OK so I'll start. Tomorrow is another day to...enjoy a glass of wine and a bubble bath. At the same time :)




Login or register to post replies.

Casitas1's picture
Replies 5
Last reply 10/20/2016 - 9:25am

My Dr.(Rock Star Doc) and myself decided to stop Keytruda treatments today. I have been on since Jan. 2016. and have been NED. since July. We will have close follow ups and scans in Jan. I know there are some NED folks that are wondering when to say when in ending treatments. Well,I just jumped ship  and will keep you all posted on my journey post treatment! 

Best, Paul

Login or register to post replies.

Anonymous's picture
Replies 8
Last reply 10/20/2016 - 3:39pm
Replies by: Anonymous, Polymath, Ed Williams, Bubbles, landlover, geriakt

Has anyone else done this?  My doc says it is way more dangerous than interferon and I shouldn't do it. But then another says it is better than interferon.  Why is it 3mg for stage 4?

Login or register to post replies.

slh4448's picture
Replies 5
Last reply 10/20/2016 - 11:52am

Hey all,

I know that many of you have read my posts about what is going on with me with side effects that I have been experiencing with ipi. To recap, I have had the first two infusions with the last one being on September 20th. For the better part of three + weeks after I experienced a lot of nausea and diarrhea.

Since September 30th, I have been on Prednisone 80mg daily, 30mg daily of a ppi. Last week I was in the hospital for two days getting a ct scan and blood work and both came back clear. I had a colonoscopy and it was determined that I have acute moderate colitis, more than likely due to ipi. For the last 10 days I have been taking Budesonide twice daily for the colitis and 10mg of Potassium because those levels were low.

After my release from the hospital I met with my doctor and he is recommending for me to not go further with anymore ipi treatments. Take a watch and see plan of action since I'm stage 3a.

I'm feeling much better, no nausea and no diarrhea and have a pretty good appetite.

So I have a follow up appointment with my doctor tomorrow, will do labs again and discuss everything.

So my thoughts are to discuss with my doctor about having my 3rd infusion maybe by the end of October, beginning of November while I'm still taking the Budesonide and the other meds that I am taking more from a proactive role instead of waiting reactively to any further side effects. I feel like I'm playing with fire with my case of colitis already, but I think that I would like to get through the loading doses. If all went well after the 3rd, have the 4th infusion around mid-December, then get a scan before the end of the year since my deductible will have been met.

I wonder what my dotor will say about my plan???? Any thoughts out there from you on my "possible" plan???




Login or register to post replies.

Aubreesmommy41's picture
Replies 8
Last reply 10/20/2016 - 11:19am
Replies by: Aubreesmommy41, keepthefaith11, laulamb, Janner, Anonymous

My 8 month old got a mole on her knee at about 5 months old.. it's the only one she has but I don't know if I'm being paranoid or not because it scares me.. I was diagnosed with a stage 1a when she was 2 months old.. a mole on the backside of my left arm.. pet scan clear.. long story.. could someone look at this mole on my profile pic and let me know if it's suspicious.. it almost looks like a freckle but it's a tiny bit raised.. thanks Traci 

Login or register to post replies.

Rkaiser's picture
Replies 5
Last reply 10/20/2016 - 12:37pm
Replies by: youngann, Rkaiser, jennunicorn, casagrayson, Anonymous

I recently took off my toenail polish and noticed a large brown spot on my right big toe and another only third toe on the left. I thought at first it must be bruises since they popped up so suddenly (the last time I took off my toenail polish was about 3 or 4 weeks ago) but after looking online I saw that hematomas can look a lot like melanomas under the nails.

I don't remember a specific traumatic event, but does the fact that they showed up so large within a month span and are on two different toes make it more likely a hematoma or melanoma? At what point in time if it's not healing do I consult a dermatologist? I just don't want to sit on this for months and possibly be missing something big. Does anyone have advice on this? Do melanomas under the toes generally show up gradually or can the really show up all of a sudden?

Login or register to post replies.

JoshF's picture
Replies 9
Last reply 10/19/2016 - 10:59pm

I know I haven't been on much lately but I always think about everyone. Been wondering if anyone has heard from Jaime or Lee. Think I'll send Jaimie an email and I believe Lee was looking at trial with Duke. I hope they're well.


Let's work for better treatments....for a cure!!!!

Login or register to post replies.

SOLE's picture
Replies 17
Last reply 10/20/2016 - 3:34pm

Hi everyone

I have come across conflicting evidence concerning sweats and melanoma.

So let me ask you this:

Do you experience day sweats and/or night sweats?

Under immunotherapy or not?

Are those severe sweats like lymphoma cancer patients?

Have you been able to link your sweats to recurrence or met apparitions or else?


I have had mild night sweats for the last two weeks and maybe a few times in september and I wonder if it is linked to the metabolic activity of melanoma

Login or register to post replies.

Hello Everyone,

Thank you to everyone who posted with information and advice before .

We got the results about a week ago from our oncologist in that my mom was BRAF+.

We were told based on his medical opinion that she should be put on Dabrafenib + Trametinib (Pills) 

He knew at this time my mom was barely able to swallow water and could not swallow food. He was unsure weather we could use the feeding tube to administer the treatment but was going to try and find out.

We never heard back and made many calls. 

After reading about that here on the forum and as much research as possible about this treatment. We thought at the speed my mom tumors are growing especially the one behind her upper GI tract that is also pushing on her lung and heart. that this would help things shrink the fastest. 

So after a week of calls and getting this treatment finally ordered, after back and forth with a few pharmacist trying to figure out if we can use the feeding tube for this. We still have no answer other then a call saying that one of the pills says it cant be crushed.

We see our oncologist tomorrow. 

Here is the question. Anyone know any story or information on this treatment for a patient that can't swallow and has sever dysphagia.

Any help or info would be greatly appreciated. I feel like time is crucial and cant wait weeks more to start a treatment.

Thank you


Login or register to post replies.

triciaches's picture
Replies 1
Last reply 10/18/2016 - 8:54pm
Replies by: Anonymous

First melanoma occurance (left shoulder) was in 2009, second was in September 2013.  I am currently classified as T2a NO MO.  I've had several lesions removed, but the most recent biopsy results have me confused.... if anyone can break these down for me, I'd appreciate it.  :)

First Results:


Lentiginous junctional nevus with mild cytologic atypia, approximating lateral margin.  (See Narrative)

Narrative:  The biopsy specimen is significant for an asymmetric proliferation of mildly atypical appearing melanocytes along the dermal-epidermal junction.  These melanocytes are arranged in nests and also proliferate as single cells at the tips and sides of the rete ridges with associated papillary dermal fibroplasia.

Second Results:


Junctional letiginous nevus with architectural disorder and focally moderate cytologic atypia present at one transverse margin.  (See Narrative)

Narrative:  There is letiginous downgrowth of the epidermis populated by single melanocytes and some melanocytic nests at the dermal-epidermal junction and in the dermis.  The melanocytes reside mainly at the sides and tips of the rete ridges with sparing of the suprapapillary plates.  Bridging of melanocytic nests is identified.   No confluence of melanocytes at the juction or pagetoid spread is noted.  The melanocytes exhibit focally moderate cytologic atypia with nuclear enlargement, hyperchromtc and agulated nuclei and prominent nucleoli.  Beneath the epidermis is a zone of concentric dermal fibroplasia.  No dermal component is identified.  The lesion is present at one transverse margin, and recurrence is possible.  


Tricia Chappell - Chesapeake, VA

Login or register to post replies.

Surf Rower's picture
Replies 4
Last reply 10/18/2016 - 4:50pm

I am Stage 1A and preparing for a larger re-excision on my upper arm (with general anesthesia) since the first one didn't get it all. I am seeing a surgical oncologist now for the second one. He mentioned he was going to have the slide reviewed from the first excision, because it might not really be necessary. Preparing to call him back to check on this, I want to know what to ask.  The path report said Melan-A and CD68 were used but in some light googling I found (old) articles saying those were not the best markers, as they also show up in benign nevi. (My dermatologist was "surprised" that his biopsy came back melanoma, as the lesion was a pink/red small bump.) What do you think, and what should I be asking the oncologist, later today when he might call back.  Thank you!

Login or register to post replies.