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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slh4448's picture
Replies 10
Last reply 10/15/2016 - 11:12am

Hello All,

I just wanted to throw out an ongoing issue to the group here. I had my second ipi 10mg dose back on 9/20. Went pretty well. About a week later w/o 9/26th to now, I have been battling a lot of nausea and episodic diarrhea. Quite a bit of diarrhea too. And not everyday, but there are some days that I am having unbelievable amounts of gas and very raunchy at that. I am in daily communication with my providers. On the 29th they brought me in for iv fluids, worried about my dehydration. On the 30th, I started on 80mg of predisone daily and 30mg of a ppi daily as well. Taking imodium but not more than label. Also taking zofram for the nausea per label. In the last week I went in to my clinic five days apart for blood work and everthing is basically good. WBC a little high, but the doctors believe that is due to my treatments more than anything else. They discussed with me about a possible gi infection, specifically c. diff so I was able to provide a stool sample on Friday and I should hear about those results tomorrow sometime. They also discussed sending me in for a colonoscopy.

I'm eating a very bland diet, don't drink alcohol and limit my caffeine to one 12oz can in the morning when I wake up, that's it. Drinking water, gatorade low in sugar, etc. My providers are very concerned about an infection...something appears to be going on???

My third treatment was scheduled for this coming Thursday, the 13th but they have cancelled that as we need to figure my intestines out first. Wondering about colitis??

So I was curious if anyone has any personal experience or knows of someone that may have or possibly going through this like I am and if so, would you you be comfortable in sharing that with me??

Anyway, hope everybody is as good as they can be!!!!!!!!!!



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Scooby123's picture
Replies 6
Last reply 10/15/2016 - 2:54am
Replies by: Scooby123, Bubbles, BrianP, JoshF

Hi guys not been on for a while due to my mum passing and having to sort out things.
I went for my 3 month check today and was also expecting consultant to book 3 month scans as they are due. I have had a back issue which is causing me pain in both legs. I do suffer from back issues but this id not settling down. When i went today i explained about my back which they are going to do MRI to check. I was very concerned when they said for me to have brain scan and body scan in anothet 3 months time. That would be 6 months not 3 month scan. I had a tumour in brain had treatment last scan showed shrunk and liver lungs stable. I am worried that leaving me another 3 months is too long to check things still ok.
Do any of you guys have 6 month scans with liver lungs and brain activity.

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BrianP's picture
Replies 2
Last reply 10/14/2016 - 10:04pm
Replies by: Polymath, stotesbery

A minute and a half explanation of how Anti-PD1 and IDO work together.

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stotesbery's picture
Replies 5
Last reply 10/14/2016 - 6:16pm
Replies by: stotesbery, Bubbles, debwray


i have had my BRAF status tested twice since January 2016 and it has come back negative both times.  One of my Oncologists recently ordered genomic testing when I progressed from stage lllC to stage IV (had a subcutaneous nodule removed and found to be melanoma).  The testing results (the subcutaneous nodule was the tumor that was tested) came back with  a BRAF V600D mutation but for only 20% of the cells.  Has anyone ever heard of this mutation or had a a similar type of result with only some of the cells being positive?  Any info would be appreciated!  I am currently on Opdivo and have had my third infusion but I swear the tumor (that I still have on my right butt muscle) is growing as it feels inflamed and painful which it did not before.  I just feel like nothing is working but I am so determined to beat this.  I just keep searching for the next thing to try.  I have already progressed while taking ipi at the 3mg dose and if Opdivo does not work either does it make any sense to try the combo?  I guess that is a lot of questions but trying to think of my options.  Thank you!

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Ross's.Mom's picture
Replies 9
Last reply 10/14/2016 - 6:10pm

Our 11-year old son, Ross, was diagnosed on 9/14/16 with melanoma on his ear. His slide has been seen at Mayo and UCSF and he is currently being treated at University of Iowa Children's Hospital. We met with Dr.Mo today- melanoma specialist in Iowa. Here's what I know from path report: Breslows thickness 2.4mm, Clark's level IV, mitotic index 5/mm(2), margins positive (melanoma focally present at deep margins), stage T3a. He is scheduled for wide excision and SLNB this coming Tuesday, 10/4. I'm deeply concerned about the lack of research on melanoma in children. Dr. Mo said about 10 cases/year in the US- that cannot be right!!?? We're still sort of in disbelief. Can this be happening??

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snow white's picture
Replies 10
Last reply 10/14/2016 - 5:39pm

So Dad is going to City of Hope tomorrow.  But, I don't know if its with a Melanoma Specialist.  Can anyone recommend an excellent doc in the LA area?

Much Appreciated!!!!!


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Woodrow's picture
Replies 4
Last reply 10/14/2016 - 5:33pm
Replies by: Anonymous, Woodrow, debwray

My husband was diagnosed w stage 1 melanoma this week. His derm called and set him w a surgeon in the same town the dr lives in (90 miles away). We have a cancer center we could go to in St Louis (150 miles away). My question is should we go to a regular surgeon or to Siteman Cancer Center? The melanoma is located on his abdomen and requires general anesthesia and possibly sentinel node biopsy. Am I being too paranoid about this.  

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Anonymous's picture
Replies 4
Last reply 10/14/2016 - 4:28pm
Replies by: Francyn, Anonymous, Tim--MRF, joelcairo

Can anyone tell me anything about Avastin?  My father's oncologist suggested he be part of a study combining Yervoy with Avastin.  He has stage 4 melanoma.  I've read a lot about Yervoy but nothing on Avastin.  Thank you.

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Alce123's picture
Replies 3
Last reply 10/14/2016 - 4:06pm
Replies by: Alce123, ldub, debwray

I had a stage 1a melanoma removed in 07/2016. I have had follow up appointments with my surgeon (a few too many due to graft failure and what he believes to be some sort of hypersensitivity reaction... but that's another story) and a skin check complete with full body photography. However, no one has checked my lymph nodes.

Checking them myself makes me super anxious plus... someone should be doing this, right?

So, who checks your lymph nodes? Pcp? Dermatologist? I just watched to make sure I'm following up appropriately.

Thank you!


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Anonymous's picture
Replies 0

Quick query...was on ipi/nivo 2 yrs (last infusion 12.2015) and up to last scan, remain NED...had low tumor burdent with nodules in lungs only...scans every 3 months (last 8.22.16)...did experience hypophysitis/adrenal insufficiency after ipi portion completed so on pred every day...blood work showed expected increase in %neuts; WBC has been high normal; as has Calcium; total protein...HOWEVER, since last scan and blood work, my neut % is way back down to pre-treatment/steroid levels; CA and total protein are low, WBC is back to pre-treatment, low levels; eosinophils really elevated for me, to 4 (had run .3 thereabouts for 2 yrs)...waiting for 'answers' but has anyone else experienced fairly significant changes in some of these areas?

Thank you so much...


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chalroad5's picture
Replies 8
Last reply 10/14/2016 - 9:02am

Hi, I've been lurking here since my diagnosis in January 2015, stage IV, unknown primary, soft tissue mets throughout my body. I underwent only a very brief course of immunotherapy treatment at UCSF that involved 1 infusion of Nivo followed by 2 infusions of Ipi-Nivo. My last two PET scans were all clear with no visible uptake and an excisional biopsy of a lingering nodule revealed "no viable melanoma." So I feel extremely fortunate about my course of treatment and marked response, especially when reading and thinking about everyone's experiences on this board.

But with the good came the bad. After my third infusion, I had elevated liver enzymes that didn't resolve on their own, requiring a halt to treatment followed by several months' worth of high dose prednisone. For a few weeks, I was taking 80mg a day and going completely loopy. About a month ago, I finally tapered down to 0 and haven't been on any medication since.

The problem is that now I have very low cortisol levels, barely above the normal range. Generally, I feel pretty tired, especially in the morning. I was never a morning person but now I'm a complete zombie. And more recently, I've had achy joints (shoulders, hips, feet) that make me feel far older than the 30yo active, fit person I was before treatment. My understanding is that, after a prolonged period of prednisone oversaturation, it could take the adrenals a lot of time to "wake up" and increase cortisol production. It's also possible that the Ipi-Nivo treatment has irreversibly limited my adrenal function.

Has anyone experienced anything similar? How long did it take for you to regain your pre-treatment adrenal function? Thanks for reading all the way through.

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Charlie S's picture
Replies 4
Last reply 10/14/2016 - 8:04am

So, it was ten years:  one hundred and twenty months ago that Kim Hanley died in my arms due to compllications  of melanoma alongside her best friend Mary.

Kim and I were star crossed.   We chatted here in the days when MPIP was rockin' and ended up meeting in person .

We traveled from Des Moines tto the Mayo Clinic to MD 
Anderson to work her problem; which ended up being lung and brain mets.

When her scans looked good, on Monday,  we slapped hands because the lung mets were gone and the brain mets were shrinking.

Friday, she was constipated; ended up getting local scans on Saturday and seeing her local onc on Monday.

Her liver was ate up with melanoma....just in a week.

One week later she wad dead in my arms.

Kim was the best,  I have no doubt that she knew she was dying and dying soon, but she did it with class.

I love her and I miss her, but I am better for the experience.


Charlie S

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Anonymous's picture
Replies 1
Last reply 10/14/2016 - 5:24am
Replies by: Anonymous

Previous Stage 1 Mel was removed nearly 1 year ago.

I noticed an eclipse-like nevus appear on my forehead around 5-6 months back. I first brought it to my Dr's attention 3 months ago (at my 3 monthly check).. He didn't like it then, though we took the wait and see approach. 

Size is quite small, though edges are very patchy, one very dark spot and a white circle for centre.

Went back this week for my check and the mole is to be removed next week as my Dr doesn't want to risk it.

I can't find many photos online, the only thing it appears to resemble may be an Eclipse Nevus.. Although they seem to be common only in children? Does anyone know if these are common amongst adults too, or if they seldom become malignant etc?

Dr's words were "looks like there may be melanocytic activity" - Perhaps that just means there looks like something is changing in it.

Any info would be appreciated!

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Amanda's picture
Replies 4
Last reply 10/13/2016 - 10:54pm
Replies by: BrianP, Amanda, Bubbles, Jubes

So my boyfriend randy was on clinical trial of now approved keytruda for 3 1/2 years before having progression of two new tumors in his thighs. We signed consent and are doing scans and blood work tomorrow in anticipation for starting a new trial combining the keytruda with an agent called sd-101 by dynavex where the agent is injected directly into one tumor one a week for the first 3 weeks followed by the keytruda and injection together every 3 weeks. Hopefully the sd-101 will introduce more killer cells to attack the tumors. This is done at ucla by Dr. Ribas and I'll keep you all posted on results.

Anyone here had experience or heard of the dynavex sd-101 combined with keytruda?

Best wishes. Amanda.

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stephlovins621's picture
Replies 3
Last reply 10/13/2016 - 9:55pm

Back in 2013, I noticed a mole on the left upper side of my back. Being an ignorant fool, I disregarded the fact that it was growing and continuing to look suspicious up until July of 2016 when I finally had it removed. The look on the dermatologist's face said it all, and being a nurse myself I knew ultimately what I was up against. Needless to say, she removed the entire mole for good measure and confirmed that it was in fact melanoma. 

I'm currently 29 years old with a 6 month old baby girl so hearing this sent me into a full blown panic. I felt such anger towards myself for feeling invisible to sickness; I should know that in my line of work, I see people of different ailments at different ages every day! Why didn't I get this taken care of earlier? 2016 blessed me with my daughter, but now is the year I'm reminded of how health isn't something to take for granted. 

I met with the Melanoma Cancer Center at the University of Michigan in August and was told my mole was 0.81mm Breslow thickness, however the way the mole was presenting, they suggested performing a wide excision as well as a SLNB to rule out any lymph node involvement. Of course I was given a 5-6% chance that it spread so of couse I felt relieved! 

Guess luck wasn't on my side...the wide excision showed no traces of melanoma (which was to be expected) however the SLNB showed that THREE nodes in my left axillary lit up and had 1% of melanoma. If it had been a 1% spread to one lymph node, they said they wouldn't have given much thought to it, but the fact that three nodes lit up changed the treatment plan. Again, I felt like a fool thinking "of course it'll come back negative and all I'll need to do is skin checks for the rest of my life! No big deal!"

I'm awaiting the call to schedule my CLND to see what exactly we're dealing with. I'm not going to sugar coat it--I'm terrified. Regardless of the results of the CLND, they're referring me for further treatment where they'll suggest either Interferon or "waiting it out". I'm trying my best to stay off the internet, it only makes me more fearful, but it's the planner in me that wants to be two steps ahead already prepared. It's scary to think about cancer cells potentially floating around, having absolutely no control over them. I pray that perhaps the 1% is on my side? To give me some glimmer of hope? 

Regardless, my heart and prayers go out to the victims of melanoma fighting the good fight. I thank you for your time in reading my message and please know that even though we have never met, I'm thinking of you and praying for you. I'm thankful for this site to use as both a resource as well as a support system and I'm thankful for any tips or advice from you all :) 



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