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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Anonymous's picture
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Creative Proteomics provides protein label-free quantification methods for both relative and absolute quantification, which a rapid and low-cost alternative to other quantitative proteomic approaches.

Label-free quantification is a method in mass spectrometry that aims to determine the relative amount of proteins in two or more biological samples. Unlike other methods for protein quantification, label-free quantification does not use a stable isotope containing compound to chemically bind to and thus label the protein.

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snow white's picture
Replies 5
Last reply 10/12/2016 - 7:31am

Dad had his Gamma Knife on Thursday.  On Sat. he started having a hard time walking.  On Sunday, he felt like he was spinning.  Yesterday, he still could barely walk.  Called doc today because he seemed worse.  Doc. believes he has a brain bleed and has scheduled a MRI later today and do a Crainiectomy tomorrow.

The Roller coaster ride begins.



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Hukill's picture
Replies 4
Last reply 10/12/2016 - 10:06am

On friday, 10/14 i get my scan at 14 weeks of ipi/nivo combo. I hope to not see the 7 mets in my lungs.

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Pcarpent's picture
Replies 1
Last reply 10/12/2016 - 7:43am
Replies by: debwray

Anyone have this happen while on opdivo and what ended up being the problem? Scared for my husband.



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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
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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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Lizz's picture
Replies 5
Last reply 10/19/2016 - 5:19am

HI can anyone recommend a melanoma oncologist specialist. Diagnosed recently, sentinel lymph node biospy and wide local excision on my arm last week.  I am now awaiting my results of the sentinel which will be available in 2-3 weeks.  I live in England.  Thank you. 

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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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Rita and Charles's picture
Replies 5
Last reply 10/11/2016 - 10:50pm

Wow - side effects were horrible BUT another great scan!  NED except 11mm spot near intestines but Onc not worried. So we won't either. Next scan January-  staying strong!!!


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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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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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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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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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Samsmom's picture
Replies 7
Last reply 10/13/2016 - 3:57am
Replies by: Anonymous, Samsmom, ilikepralinen, debwray, Ed Williams

Hi everyone. I am new and just last week was told I have melanoma. I went to a dermatologist to have a mole looked at and they immediately removed it that very day. I got the results of the biopsy back and was told it was Melanoma and that they would be removing an extra cm from both sides of my original site. They said that it was likely that it was completely removed and this sample would probably indicate there are no cancerous cells in the surrounding tissue. However, how would they know for sure that nothing had spread to the lymph nodes? 

I live in Germany and have only been here for a year, so my German is not as good as I would like it to be. My doctor speaks great English and is very kind and thorough and is supposedly one of the best around, so I trust her. However, I didn't even know what she was talking about as far is it being melanoma and what any of it meant. I feel stupid for not reading up on it beforehand, but was only expecting to turn up to get my stitches out, not to have another biopsy done. 

They sat me down and asked what questions I had, but I didn't even know what to ask! I also didn't even ask to see my findings because they were in German and I knew I wouldn't be able to read them correctly. 

I feel lost and silly for not knowing what to say or to even comprehend what was happening. I go in for a bandage change tomorrow and then to have the stitches removed in 2 weeks. Is there anything I should ask? Do i need to have any further tests done? Is there a chance that it could have spread to the lymph nodes? What should I look for?

I'm continuing to do research, but I am being careful not to google to many things for fear of freaking myself out. Any advice or help would be so greatly appreciated!

Thank you!


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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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