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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Dear friends:

The MRF is part of an exciting collaboration with a new non-profit called SHARE For Cures that was featured by the White House Cancer Moonshot Initiative. This study will help to understand use of immunotherapy drugs outside of clinical trials. We are looking for patients who are taking or have taken immunotherapy drugs (anti-PD-1 or anti-PDL-1 inhibitors), including Opdivo (nivolumab), Keytruda (pembrolizumab), and/or Tencentriq (atezolizumab).  Patients will be asked to share whatever medical and wellness data that they feel comfortable sharing with researchers. You will create a user account on the SHARE For Cures website, securely connect to the patient portals of your medical providers and health and wellness apps that you use, and select to share the data collected for research. There will also be a survey about your immunotherapy use.

To participate, please email and reference "MRFImmuno” to request an invitation code.  We encourage you to participate to help us better understand these drugs and help find more cures for melanoma patients. Your assistance in this research collaboration is very much appreciated.


Shelby - MRF

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slh4448's picture
Replies 6
Last reply 10/21/2016 - 1:40pm

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???




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Buddy0513's picture
Replies 2
Last reply 10/21/2016 - 12:59pm
Replies by: BrianP, snow white

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 :)

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Anonymous's picture
Replies 14
Last reply 10/21/2016 - 12:58pm

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?

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JoshF's picture
Replies 12
Last reply 10/21/2016 - 11:37am

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!!!!

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Anonymous's picture
Replies 3
Last reply 10/21/2016 - 10:47am

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.


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Anonymous's picture
Replies 9
Last reply 10/21/2016 - 10:26am

I am really in a bad way today and don't feel that I can come here- to a community of people who have the same cancer as I do- because I have been reading all of the posts (every day) as a way of trying to learn about melanoma and be supported, yet I have seem too much judgement and  chastising to feel comfortable  sharing.

Please those of you who have all the answers, be patient and kind to those of us who don't and who are just seeking a shoulder to lean on.

There aren't many places we can go.


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vickiaa0529's picture
Replies 11
Last reply 10/21/2016 - 1:18am

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 



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Replies by: Surf Rower, Anonymous, desertsun, Janner, CHRISNYC

Hello all, glad to have found this forum. Please forgive me for not yet knowing the right terms... I promise to study, but my second surgery is coming up soon and maybe someone has feedback for me on my questions. Two weeks ago I had very shallow 0.2mm melanoma removed from outside upper arm, in a wide excision, by a plastic surgeon I was referred to by my dermatologist. Good job 30 mins local anesthesia, not much pain, minimal scar visible on upper arm. Unfortunately the pathology on the excision indicated one lateral edge still has melanoma, so now there has to be a second, larger excision. I switched to a renowned cancer center in my region. The surgical oncologist there says the first surgeon didn't orient the sample so they don't know what side the residual cells are on (!!!!). It could even be a separate melanoma, so tiny it wasn't seen. In any case, he says he has to remove the entire scar area from the surgery two weeks ago, so it doesn't really matter and it will be pretty big. "Puckered" "divot" and "shark bite" were the not-reassuring words. Of course I am super happy this is only a Stage 1A; being high risk for this at age 62 with a life of sun, when I heard they had not gotten it all I had been very worried and working on my bucket list (more train travel). Here is my actual question, though any feedback on this situation is welcome.   - Does it sound like they need to use general anesthesia for this? He drew on my arm and the excision will be football shaped and about 2.5" long. He said they would have to pull on the skin a lot so they were going to use a "light" general. I don't mind the anesthesia, but it suggests that the surgery is kind of a big deal. The first one was so easy and the stitches were internal; these will be external. Thoughts? Have any of you chosen a plastic surgeon over a surgical oncologist for this size excision? I like both of the doctors. It seems better to be treated at a cancer center, regardless of the cosmetics afterwards, right?  Maybe they make it sound worse than it usually is so we are happy with the scar later. At least it is in a good spot for a tattoo.

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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?

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youngann's picture
Replies 7
Last reply 10/20/2016 - 1:44am

I just had my 3rd dose of Ipi 3mg/kg and, so far, in addition to 5 days of constipation with each dose, I’ve had only mild nausea, itchiness and fatigue. However, since starting the Ipi, about 3 or 4 times a week, I’ve had a spell of vertigo when getting into bed at night. It’s only happening after I turn out the light and as my head hits the pillow. I have to force myself to stare at the alarm clock in order to stop the bed from tilting and trying to tip me onto the floor.

My thought is this is something totally unrelated to melanoma or Ipi but I was wondering if anyone else had experienced this dark vertigo thing while under treatment.


Home of the original "Crappy Shirt"

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Anonymous's picture
Replies 3
Last reply 10/20/2016 - 1:25am
Replies by: slouttit, landlover

I am stage IIIa.  I was diagnosed in January 2016 with a 1.5mm melamona on my left ear, no ulceration, 4/sq mm mitotic rate.  I had surgery March 22, 2016 to excise the melamona and complete a SLNB.  2 of the 7 nodes were positive for micrometastatsis melanoma.   I then had a paratidectomy and CNLD on the left side of my neck.  All 54 lymph nodes were negative.  Recent CT scans and Pet Scans were negative.  

Since the CNLD in May,  I still cannot raise my left arm above 90 degrees to the side.  I'm doing daily stretching and exercises but haven't seen a lot of progress.   In addition, my smiile is lobsided as my left lower lip is impaired.  However, this seems to be getting better.

Does anyone have advice for these symptoms? 

My surgeon said the nerves were spared during surgery but were stretched and this weakness in normal.  However he didn't give me a recovery time.

As for next steps, I'm waiting to hear whether I'm eligible for a clinical trial comparing Keytruda to High Dose Interferon.  If I don't do the trial my options are high dose intereferon or watch and wait.  Ipi is not approved in Canada for stage III.

Any thoughts on next steps?






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Samroberts4's picture
Replies 6
Last reply 10/19/2016 - 11:54pm
Replies by: Samroberts4, Surf Rower, casagrayson, youngann, Anonymous

Hello all,

I was diagnosed with melonoma today, which the doctor termed "a particularly nasty one." I am going to the plastic surgeon on Monday (10/17/16) to see if he can remove the melonoma; they are also going to cut into the surrounding areas to see if it has spread.  The melonoma is on the side of my right bicep, and my primary-care physician looked at it several months ago but didn't think it was a grave concern. 

Today, my skin doctor said that she would pray for me, which freaked me out even more than hearing the diagnosis.  I am glad to join this support forum and will give you an update on further develoments, which I will post on Monday.  I am 48 years old and in good health, so I hope this bodes well for me in my fight against this awful form of cancer. 

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Anonymous's picture
Replies 8
Last reply 10/19/2016 - 10:03pm
Replies by: POW, WithinMySkin, BrianP, Janner, Anonymous

A friend of mine was just diagnosted with malignant melanoma Stage 0, which I think is "in situ", right? His doctor just took a punch biopsy and said no further treatment was necessary. Is a wide local excision (WLE) usually ordered for a Stage 0?

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vickiaa0529's picture
Replies 18
Last reply 10/19/2016 - 7:43pm

Hi it's Vicki

I had great news on my Scans the tiny lesion on my brain is gone and the larger one is turning into scar tissue. My CT scan was clear! My oncologist is suggesting high dose ipi due new data with higher overall survival rates. How many have gotten through all 4 doses without severe consequences? 

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