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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snow white's picture
Replies 13
Last reply 10/11/2016 - 12:39am

Hi Warriors- I need some input from you all.  I am finally back home and we are setting up appointments next week for Dad to start figuring out what the plan is for further treatment.

Ok, so he had the Gamma Knife on the Brain (15mets) on Thursday.  The Brain specialist also mentioned that we could look into doing the Cyber knife on his spleen that has the most mets in his body (I believe more than 20).  Also, they has been mention of removing the spleen completely. Any thoughts on this.  Also, in your best opinion what is the first line of defense next? He is BRAF negative.  Specifically what drugs, combo of drugs etc.  I want to be prepared when we speak to the doctors.  Dr. Margolin offered the clinical trial, but we are pretty sure we don't want to go with that to start off.

Another subject, my Mom is very firm about wanting him to take cannabis oil. I advised that I thought it would be good to speak to the doctors about whether or not it would interfere with other treatments and she said that most Doctors would "poo poo" it. Thoughts? She says that she is concerned about the horrible side effects that he is going to experience, I said that I believe that we should try to be positive in thinking that maybe he wont get bad side effects, she did not agree.  Dad is not super comfortable with the canabis, he doesn't like the way it makes him feel.  Mom wants me to "take over" his vitamins, supplements and meds.  Making sure that he takes everything that he should.  Any suggestions on supplements that you believe are helpful?

Any and all comments are welcome.

Thank you in advance.


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ken_k's picture
Replies 4
Last reply 10/11/2016 - 12:08am
Replies by: Momofjake, Anonymous, Bubbles

About 10 days ago I had a mass approx. 7x4 mm removed from my forearm and the biopsy came back as melanoma in situ.  It was removed by excising the mass but not the full skin thickness.  I go back in 5 days to have it resected and evaluate margins.  They indicated the procedure will take approx. 40 mins.  

How are margins typically evaluated in a derm. office setting?

Assuming th biopsy confirms in situ (stage 0), should anything else be done other than annual derm. exams and monthly self exams?

Anything else I need to know?

Thanks in advance for your feedback.


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Toddmichael's picture
Replies 4
Last reply 10/10/2016 - 6:51pm

hello - I had scalp surgery for very thick melonoma in May.  Unfortunately back in 2 nodes behind my right ear and the amazing folks at Moffitt will be doing full node disection on  Oct 24.  I've been told about 1 night in ICU, a drain for a week and a pretty scar.  I'm pretty calm currently, more concerned [because of the pain] about my recent total tear of ACL and partial meniscus surgery that is also needed... but that aside... any suggestions/comments greatly appreciated.

Todd Guzy


Todd Guzy

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Mikers's picture
Replies 3
Last reply 10/10/2016 - 12:19pm
Replies by: debwray, Bubbles


as I've posted before, my wife was diagnosed with leptomeningeal melanoma (LM) on Sept 1st. 
Before that she had lung tumors which have resolved with Braf inhibitors then Gamma-knife for 1 brain met and then Gann-knife for onother 8 brain mets. During last half a year she had pembro+dabra+tram which didn't safe her from last 8 brain mets and LM progression.
Nevertheless we've stopped all medications and started ipilimumab with minor hope for sucess.

She had 2 ipi infusions (second delayed for 1 week). After first infusion she started experiencing serve headaches which were managed with pain killers and diuretics (Diacarb- Acetazolamidum). After 2nd infusion headaches became more serve and frequent and vomiting appeared.

Now she has a constant vomiting and can't eat or drink. Neverheless MRI didn't reveal any progression in brain or remarkable symptmos of high intracranial pressure (like hydrocephalus). 

No signs of Ipilimumab-Induced Hypophysitis also.

I wonder if there can be ipilimumab side effect of disease progression?

I'm trying to find any doctor who can answer this question but here they are not familiar with ipilimumab drug.

If there any possibility to show MRI scans distanly to any expert? Kind of remote second opinion?


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Maria C's picture
Replies 2
Last reply 10/10/2016 - 11:44am
Replies by: Maria C, Johnjk04

Has anyone ever had ringing in their ear after brain mets radiation? My summer-fall has involved brain surgery, cyberknife radiation, and 3 infusions of pembro, and somewhere between the 2nd and 3rd pembro infusion I started getting ringing in the ears on and off. The last 2 weeks it's been constant in the left ear.

My radiation doctor says the ringing is not related to the radiation, my oncologist says it's not related to the pembro but that I should move up my follow-up MRI currently scheduled for the end of this month. They're not worried it's something new but maybe edema, even though none of my treated mets is near the left ear canal. I'm getting nervous...has anyone experienced this side effect?

Also experiencing fatigue, muscle aches, and on & off heat flashes/chills...

Any of this sound familiar??




Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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Anonymous's picture
Replies 0

They come up with possible treatment options for cancer patients who already failed standard therapies. They try to do that by sorting through all of the latest medical journals and trial data, but it is nearly impossible to keep up.   

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Replies by: Cynthia C, Anonymous

I know this is a decision I have to make,  but what would you do? I ship out tomorrow and of course I notice a new spot on my leg. I had a derm appt in May and I do not believe it was there at the time.  It meets the A,B, and D criteria. I am trying to decide if it can wait four weeks. Its super light, my significant other could hardly see it, but the melanoma patient in me is scared.

Here is a link to a picture.

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kensmom's picture
Replies 4
Last reply 10/9/2016 - 8:59pm
Replies by: kensmom, Polymath, debwray

Hi!  My son was recently diagnosed with melanoma.(Sept 12, 2016) We have been given very little information. The initial biopsy was 3.9 mm deep and the mole had been bleeding for several weeks. The surgeon we were referred to performed an excision and sentinal node biopsy on September 21, 2016. It was supposed to be a 2 cm excision and the whole proceedure was supposed to take about 30-45 minutes. instead, it took almost 3 hours for the surgery and he has a 4 inch concave incision on his fore arm. We went for removal of the stitches on Oct 7, 2016 and were told the path reports are not complete. Apparently the pathologist wants an expert opinion on a "funky" node. We were told to come back in 2 weeks. And that is all the info we have. Any thoughts or suggestions.

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Laura-lou's picture
Replies 10
Last reply 10/9/2016 - 4:25pm

Hi all,

I had a biopsy on Monday, and by today, I have decided if I haven't heard anything, it's nothing.

My mole was 7mm with two colours - black and brown - and what looked like a mole, within a mole, within a mole.

Presented total A-E, but I've been using reading some moles do present like melanoma, and they're not.

A good chunk was taken, 9 stitches, or so.

What I'm interested in knowing, is how long did it take for you to be told it was melanoma. I'm thinking if I don't hear, defo by tomorrow, it's fine.

Thank you :)


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keepthefaith11's picture
Replies 2
Last reply 10/9/2016 - 3:51pm
Replies by: keepthefaith11, geriakt

My dad had his second infusion of Opdivo this past Wednesday. Thursday he started feeling really off balance and dizzy, especially in the first part of the day. This went on for three days. Today Sunday, he is completely fine again. Has anyone experienced dizziness from your infusions? Also, if you have side effects from one infusion does that mean you will keep having them after every infusion?


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cancersnewnormal's picture
Replies 26
Last reply 10/9/2016 - 12:32pm

Hi all!

I was on Keytruda for 20 months. It worked quite well for me, including a stoppage of any new brain mets! In July, i began having pancreatic issues, and we stopped/paused infusions. My brain scan as of 4 weeks ago, is clear, so it seems as though the immune response continues. WHEW! Although my pancreatitis cleared up, and the enzyme levels have gone back down, I'm now finding myself with joint/muscle pain, and the ever so annoying sinusitis. I've had a stuffy nose since early August, and I snore like a grizzly bear, even when wearing a breathe right strip! Thus far, the joint pain has been "contollable" with over the counter NSAIDS. There are days though, when the pain is too high for normal daily function. We're blood testing for Lupus and rheumatoid issues. Tests showing inflammation came back as out of range high, but not crazy high. 

My questions...... Has anyone had these same kinds of issues? As for treatment of them... did discontinuing immuno infusions do the trick? Were you able to "spot treat" body areas (ex. knee or nose), or did you have to rely upon systemic steroids? I'm not a fan of how the dex makes me feel, and I am concerned about systemically slowing the immune response, because I absolutely fear the return of brain mets. However... something has got to give.

-- Niki

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Anonymous's picture
Replies 5
Last reply 10/9/2016 - 9:22am
Replies by: Anonymous


My husbands pathology report states the below in the comment section, could someone please help me work out what this means. 

'A difficult meloncytic lesion. There is at least melanoma in situ and in one early level a solitary atypical dermal meloncyte. This is deemed early largely regressed melanoma' 

it is the early large regression which has me confused. 

His report states 0.4mm, no ulceration, mitotic figure 0 per mm2, superficial spreading, radial growth phase, brisk TIL. I know all of these are signs of good prognosis however I can't help but think they aren't true as it had largely regressed therefore could have been deeper/VGP etc

Any advice would be appreciated :-) 

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Rita and Charles's picture
Replies 5
Last reply 10/9/2016 - 1:32am

So........hope is funny.  I have read of those with great blood tests, low ldh, nothing sticking out of the ordinary raising red it dangerous to put to much emphasis on blood work?  Could the Mel still be there even though the blood looks normal?  I know.....impossible question.




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Jango's picture
Replies 9
Last reply 10/9/2016 - 1:26am

Hi everyone I am new here and it is my dad that has melanoma . Or that is what is suspected as they have found a mass near his bowel. He will have to go for ct scans and then biopsies etc. But they are suspecting melanoma as he had stage 1 a few years ago on his abdomen. It was removed successfully with nothing found in the area. He was declared NED and followed up for a few years after. All clear until now. Of course my mind just jumps to the worst that he will not survive this. But maybe some of you have been through similar situations. I am just now starting to read the posts. Please, please give me some hope. I hate that I have to be here or any of you, but just glad there is a community.

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SOLE's picture
Replies 15
Last reply 10/8/2016 - 6:00pm

Hi again!


Can somebody tell me what this equals to? In my readings on the subject on the net (and they are hard to find) it tells me that there was no cluster of cells and that the diameter of those cells is less than 0.1mm.


Is this true? Am I really a stage 2??


BTW, WLE on plantar of my foot came back clear!!!!!!! And I got to keep my toes!!!!

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