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
Replies 4
Last reply 10/11/2016 - 10:49pm
Replies by: williez, Capt jack, Patrisa

For those that have gotten a response from Keytruda, how long did it take for shrinkage of tumors?  I have in transit tumors and can feel them under the skin.  The area around the tumors turns red at times so I am assuming it is some type of inflammation.  Have any of you experienced redness of the skin around subcutaneous in transit melanoma tumors?  I am not sure if this is from Keytruda and is a good sign that it might be working or if it is common and something that happens in the lmphatic system when fluid is blocked by tumors.  It does not appear that the tumor has shrunk any after 2 infusions.  Thank you for any responses. Take care everyone.

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Fressia's picture
Replies 3
Last reply 10/11/2016 - 10:48pm
Replies by: WithinMySkin, debwray

After what seemed like an endless ordeal, I am finally scheduled for surgery (was overseas but now back in the states). My surgery will be this Friday and I'll be having the wide excision with sentinel lymph node biopsy. Getting nervous about it but anxious for the day arrive! I've never had surgery before so this is all new to me and wanted to gather as much information as I can as far as what I may experience after the procedure. Oh and my primary is located on my lower left back, next to my tail bone. 

Is recovery painful really? How much did It affect your mobility? 

I will be under general anesthesia, kind of creeps me out but I've read it's actually safer than people believe it to be. For those who had general anesthesia, approximately how long does it linger in your system?

I know it depends on each person and doctor, but approximately how soon after can we resume excerising.... weightlifting to be specific?  

Any tips and/or suggestions in general are appreciated! New to melanoma and surgeries, so this all a whole new experience for me!



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JoshF's picture
Replies 16
Last reply 10/11/2016 - 9:26pm

Hi everyone! It's been a bit since I posted. August and beginning of Sept was rough. Liver all out of whack, bunch more tumors. Needless to say, I made it down to Houston and did all the baseline scans and qualified for trial. Thank you God!! Unfortunately my disease didn't slow down. It's upsetting because I had such a stretch of years with low tumor burden. None of the docs can explain it. Anyway I have days of feeling good and days like today where I can't get out of bed and believe this crap is killing me. My heart is broken because I know realize how ugly this can be. Just hate people suffering. Enough of that!

i received 22.4B cells back into my body. Everything went well with that. A couple hours later I started on low dose IL-2 injections. Finished my 28th and final dose yesterday. Thinking this is part of why I feel least hoping. The next night I received 1st dose of ipi. So apparently my cells tested well against Mart-1 positive melanoma tumor. How the pertri dish translates to body will tell that story. But basically, the PI said the cells are the army, Ipi is a weapon we give the army and the IL-2 is for cell proliferation. My concern was doing ipi again since I responded once and clearly not this last time. Cells are primed so hopefully ipi is useful army!!! Amazing research down there...fighting to be optimistic but feeling crappy. It was nice to personally meet Brian! Hope everyone is well! 


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

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BrianP's picture
Replies 7
Last reply 10/11/2016 - 5:28pm

Warning:  Long winded post may cause narcolepsy.  Recommend placing pillow near keyboard.

I really enjoyed Julie’s “Update & Plan A & B” post and found it quite helpful.  I was pleased to find our methods were very similar.  Here’s my update and lesson’s learned over the last couple months.  A quick summary for those unfamiliar, I completed a 2 year sequential ipi/nivo combo trial in Aug 15.  At the completion of the trial I had two tumors that had been stable for the last 18 months of the trial and for one year post treatment.  A Petscan on 3 August showed a couple new suspicious nodes with mild uptake.  Due to location of the tumors and some other factors I made the decision not to biopsy and rescan in 8 weeks.  I did that scan last Wednesday which showed increased uptake on those nodes and confirmed my recurrence. 

Waiting the 8 weeks for the second scan was tough mentally but it did allow me some time to see several experts in the field.  Like Julie I did as much research into the science and did a lot of searching on  Here’s a little trick on I found very helpful.  Go to Advanced Search and type in “melanoma” in Search Terms.  Under Recruitment select “Open Studies”.  Select Adult under Eligibility Criteria.  For location select United States (or as appropriate) or you could select between 1 and 3 states near your location.  Under Additional Criteria you could select the Phase trial you are interested in or leave it blank.  Click search and depending on your location criteria you will get 2 or 3+ hundred results.  What I discovered is the “Search Details” tab near the top.  If you open that tab you can then usefully filter your search.  For instance if you are looking for an anti-PD1 trial click the “PD-1” term and it will filter down to only the trials with anti-PD1.  If you are a Stage IVer you can click the “Stage IV melanoma” term and find the trials for stage IV patients.  Maybe I’m the only one that didn’t know that but I’ve been using for a long time and never knew that.

Another lesson I keep relearning is how to prepare for meeting with the melanoma experts.  When I go there with specific questions and objectives for the consult I always come away with more useful information.  If I go there “hoping” they are going to tell me what I need to know I am usually disappointed.  Sometimes after a consult I realize that I’ve received lots of information but the doctor never really said what I should do.  I have to remember the question, “What would you do if you were in my shoes?” question.

So in my specific case I struggled through a few competing treatment thoughts.  As a previous anti-PD1 responder there’s no guarantee but a good chance I would respond a second time.  Do I want to go back to a PD1 drug and hope to get another 1 or 2+ years out of it and hope for new and improved treatments to come along in the future.  The other competing thought was do I try something outside the box and keep PD1 in the back pocket.  And the third competing thought was a compromise between the two where I look for a PD1 + experimental drug combo trial.  I will say I was impressed with the amount of phase I and II trials with PD1 combo.  I think it was Tim Turnham after ASCO 2016 who said we are 1 or 2 years out from the next “big PD-1 like” announcement.  If the number of Phase I and II trials on is any indication I think he is right.

I struggled with the decision but have decided to go with the outside the box option and try the” Cellular Adoptive Immunotherapy Using Autologous CD8+ Antigen-Specific T Cells and Anti-CTLA4” (Josh’s trial).  There’s a few beliefs I’ve had from the beginning of my melanoma journey.  One of those was that I was going to try as many things as I could while I have the ability.  I’ve read so many stories of patients not having success with their first, second, or even third treatment but eventually something worked before they ran out of time.  That also formed one of my other beliefs in the cumulative effects of treatments.  One treatment may not be your solution but it provides just the right amount of impact on your immune system for the next treatment to finish the job.  I also figured this was a good time to try a trial like this where you have to wait up to 8 weeks to start while I still have slow disease progression and low tumor burden. 

Well that’s it for now.  If you made it this far I salute you!



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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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