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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Patina's picture
Replies 9
Last reply 3/6/2018 - 8:25pm

My Mom is a total success story when it comes to melanoma and the revolutionarily immunotherapies now available. She was diagnosed on Halloween in 2013 with melanoma. By Thanksgiving we knew she had brain mets too - after a misdiagnosis!  We were lucky enough to eventually find the right doctors and she got the right treatment Yervoy and Gamma Knife Radiation. 

She was lucky for more than one reason. The first being that the 3rd opinion found the brain mets which were missed. She was treated 4 days before starting treatment at USC with Yervoy. The second is because she was a supper responder and the tumors just melted away before our eyes... Finally, when we got an answer we didn't like about a brain MRI we headed to USC for a second opinion. Her new doctor found another misdiagnosis! My Mom was treated successfully for 17 brain mets a week later!  If it weren't for the folks at USC (and a daughters persistence) I am sure my Mom's outcome would not have been as good as it's been.

Here is her story!


Mom's been treated for 28 brain mets!

When in doubt get a second opinion. It can make all the difference sometimes.


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Rob578's picture
Replies 5
Last reply 3/6/2018 - 7:27pm

Your gut microbes may give melanoma treatment a boost
Published Friday 5 January 2018
By Catharine Paddock PhD
Fact checked by Jasmin Collier

Having the right balance between good and bad microbes in the gut may improve the likelihood that immunotherapy successfully treats melanoma, which is the most aggressive and dangerous form of skin cancer.

This was the conclusion that researchers from the University of Chicago, IL, came to after they found much higher levels of specific bacteria in the stool samples of people with melanoma who responded to immunotherapy, compared with those who did not respond to the treatment.
Among the "good" gut bacteria that the team found to be abundant in those individuals who responded to "PD-1 blockade" immunotherapy were Enterococcus faecium, Bifidobacterium longum, and Collinsella aerofaciens.
The scientists found that having higher levels of these strains of bacteria in the gut seemed to increase penetration of immune system T cells into the microenvironment of tumors and boost their ability to kill cancer cells.
In the journal Science, they note how the people who did not respond to the immunotherapy also had an "imbalance in gut flora composition, which correlated with impaired immune cell activity."


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Marcin's picture
Replies 5
Last reply 3/6/2018 - 1:56pm
Replies by: Marcin, Anonymous, Janner

I've been diagnosed with Stage I melanoma (Clark's level III) after my routine derm checkup in February, and had it removed last Thursday (March 1st). After two days, I noticed a big swollen lump in the armpit area, which is tender to touch. Today's Sunday, so I can't call the doc to follow up, but I'm really worried if this is related to the melanoma. Theoretically melanoma should not spread to the nodes at this early stage, but there could be some possiblibity? I had my lymph nodes swollen while sick, but never in that area.

Any thoughts?

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So just a brief history. Had a mole removed Feb 2016, came back Melanoma Stage 0. I have been going to the dermatologist every 3 months since I had that place removed. I have had several places removed on my stomach since then and everything has come back ok. 


Friday I went in for a regular check and he saw a spot on my arm that didnt look good to him. He went ahead and removed it. I am now waiting on the results.....the suspense is killing me. I was going to attach a photo but I am not sure how to do it. 

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jessica492's picture
Replies 2
Last reply 3/6/2018 - 12:27am
Replies by: casagrayson, Anonymous

Hello all,

I want to start by saying you all are awesome warriors! My grandmother on both sides have been battling melanoma for years. 

The reason I'm writing is that I have a large mole. It's kind of in an awkward place (vulva) and it's flat. The edges and blurred and slightly asymmetrical, but the color is consistent. I am making an appointment for a dermatologist - but the thing is, i noticed it years ago. About 9 to be exact. Is it possible that I have had melanoma for years without knowing? I'm just terrified, and that fear has kept me from getting it checked. It's irrational, I know. How long can you have these without any adverse symptoms? Because otherwise, i feel fine.

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Raco's picture
Replies 2
Last reply 3/6/2018 - 12:27am
Replies by: Raco, Bubbles

Need some feed back please. I had stage 2 Melanoma on my left side. had surgery Feb 5th to remove. 7 inch incesion. and a SLNB under left arm which there were two removed as they were showing blue dye. Both LN came back as Microscopic Cancer N2A  (Stage III ? )

Went back to Surgeon who to remove stiches and he said that he may want to take our more LN but wait and see what the Oncologist suggested.  Oncologist apt said that the margins were clear on my side but the LN (2) came back with cancer, so he wanted to do a Brain MRI and PET Scan, which I just had  March 1st and 3rd. I have a followup apt with Onocologist on March 8th.   

If any thing that  lights up from scans, the onocologist said our path will move in a different directio however, if scans come back Neg. than he suggest SLND and some therapy.

Does anyone have any thoughts or suggestioins on what type of therapies may be out there to treat Melanoma.  I know the questions is broad but some insite may be good so I dont go into apt blind.     JUST Want to be prepaired.

Thank in advance for your imput. 


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DZnDef's picture
Replies 11
Last reply 3/5/2018 - 7:35pm

Hi all,

Have not been active on the board much due to a string of great scans, working on physical therapy and wanting to pretend.  I think the last time I posted a status, I was doing quite well with all brain tumors resolved and supposed "remnants" in my lung(oldest tumors).  Well, I had great scans in October and even better on December 26th (not even remnants visible).  I was a super responder to Taf/mek and I was also on Pembro (Keytruda).  The idea being that Taf/mek would get me started, but not likely be a long-term solution given my tumor burden was moderate to lightly heavy when I started it so it was hoped that I would respond to Keytruda in the meantime for a longer-term effect.  After just three infusions of Keytruda at the end of 2016, I was taken off the taf/mek due to adverse effects (fevers, shaking chills).  The Keytruda had not yet taken effect as I immediately began to grow tumors again requiring a craniotomy (which really wasn't bad and went quite well) and a second round of gamma knife (first round was September or October 2016 when brain tumors were discovered.). I had a largish tumor in the right pre-frontal lobe that got angry after the first round of gamma knife and refused to go away.  I started calling it Tenacious T.  So in February of 2017, Tenacious T. got another round of gamma knife as well as a first-time shot for a few new ones at the time.  Back on Tafinlar/Mekinist combo at both the reduced dose of Tafinlar, plus ten mg. prednisone and a new schedule of two weeks on and one week off.  Also continued Keytruda.  Stellar results from July 2017 to December 2017. At that point, my oncologist wanted me off the combo to see if Keytruda was doing its thing.  Given my history of going off it before with rapid growth of a new brain tumor, I was nervous and requested if I could stop the combo closer to my next scans in case anything grew, it wouldn't have time to get too huge was my thinking.  He liked that idea.  So I stopped the combo altogether just over three weeks ago (six weeks before next scheduled scans).  Saw the doc for my three-week Keytruda infusion on February 27th but had developed symptoms making him insist on a head scan that day.  Tenacious T. was back and causing havoc to my left side.  Loads of fluid around the tumor so did not get Keytruda infusion and instead got a Decadron infusion.  Did not have radiologist report finished before I left.  Got a call that there were six more itty bitty ones.  Started Taf/mek again on Wednesday.  Very minor improvement since the visit.  Have an appointment with their brain radiologist this coming Wednesday (my brain guy is out all week).  Not sure if he will recommend gamma, whole brain or craniotomy.  Assuming Taf/mek comes through again, not sure what's next for possible long-term treatment.  What a wild ride.  Frustrating to be back at square one.  I'm sure something will work for me, just not sure what and need to stick around long enough to try the "next thing".  Everyone responds so differently to different things.  This is definitely not one-stop-shopping medicine.

Sorry to be a downer with this update.  I much prefer giving good news.  You might appreciate that I am a huge fan of Tafinlar/MEKINIST.  Hope you all beat this beast for good.

Oh, as an aside, I am in a trial where they try to detect melanoma in the blood.  It's blind so I don't know my specific results but I pretty much do now. They haven't drawn my blood for it since December so I don't know if it ended or I was kicked out or what.  Forgot to ask as this last visit was all about Tenacious T.



Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017

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45_dps's picture
Replies 2
Last reply 3/5/2018 - 7:34pm
Replies by: Bubbles, TexMelanomex

Hi! I’ve read occasionally over the past 9 months but primarily been buried at work and feeling like melanoma was in my rearview mirror. I had an extensive surgery in Feb 2017 (followed by 3 Ipi and the 8 Pembro) with scans every 3 months since. But I just had a scan which showed tumors in my parotid, neck nodes, and lymph nodes behind my ear. It turns out the tumors in my parotid and behind ear have been there all along but only identified by radiology now. So they have been stable all along (I had an unknown primary and I think that’s why they didn’t know where to look).  Now getting a parotidectomy and removing the nodes behind my ear in the same surgery (not doing anything about the neck nodes because they are sub centimeter).

I guess what I’m sayin is that I’m back and look forward to helping others who may experience an unknown primary.


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Anonymous's picture
Replies 4
Last reply 3/5/2018 - 1:42pm
Replies by: TomW, DZnDef, Anonymous, tedtell1

  My husband's last treatment of opdivo/yervoy was in June of 2017.  He had three of the four that he was scheduled to take before the side effects got the best of him and he had to discontinue treatment.  Latest scans showed tumors shrinking and that's great news!  One thing that seems to keep hanging on and actually seems worse now is a "balance" issue.  That's the best way I can describe it--he walks fine and then suddenly it seems as if he is stumbling.  He hasn't fallen but has come close.  He had a brain scan several months ago when this started happening but it was clear. Anyone else experiencing this?  Could it be contributed to something else altogether and we just want to blame everything on what's been happening the past year?  Any help is greatly appreciated---thanks!

Concerned Wife

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Sharon93065's picture
Replies 6
Last reply 3/5/2018 - 11:47am

I took glucosamine chondrotite for years due to osteo arthritis and it helped.  Then last spring i dropped it and everything else going into combo treatment didn't want anything interferring with results.  Dec '17 finally weanted off prednisone and i am on 1mg of opdivo every other week. Since weaned off prednisone the joint paint in my ankels, knees, buttocks is pretty bad.  Hurts to walk, hard time with stairs etc.  I asked dr if i could start back on glucosamine and he said yes.  The Meloxicam prescription i have had, 7.5 mg. He said i could take one or two a day but not to exceep two weeks.  Worrisome for kidney damage.  So i only took for 3 days and quit.  Saving them for bad flareup.

Any advice from others on this subject.  Water aerobics helps.  Can't wait for it to get warmer to use our solar heated pool.  Don't want to use ymca pool, too much chlorine.  

My recent mri had two  new small spots show up, will get new  mri in 3 weeks, but everything else from the brain down is good, the two new nodes in my gut, one is gone and the other shrank.  The mass in my lung gone, and even the groundglass cannot be seen.  

Thank you all for your support...and this forum.  


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Ridingaroundwith27Jennifers's picture
Replies 6
Last reply 3/5/2018 - 9:58am

Hi All,

Overall things are going OK at the moment.  No new tumors.  Brain looks OK.  We are still watching the surgery site.  There is something going on but the Drs can't tell if it is normal healing, radiation injury or tumor regrowth so at this point we just wait.  Still on nivo every two weeks.  CT-scan is Tuesday to check remaining tumors on adrenal glad and liver.

So here's the confession part.  I'm supposed to be taking lovenox twice a day because of the initial stroke.  The oncologists think the stroke was due to hypercoagulated state from the melanoma.  Since my blood is clotting normally I most likely don't need the lovenox.  The injection sites were so sore I just couldn't bare them anymore.  I stopped taking about a year after the initial stroke.  I told the Drs about this and they are all very supportive but won't sing-off on me not having the blood thinner without the vascular neurologist's approval.  So I've got that appointment coming up at the end of March.  

Here's the other thing.  I'm supposed to be taking 750mg of Keppra daily for seizures.  The 500mg dose was managable however I don't feel very well on the 750mg dose so I've not been taking it.  I mentioned that I'd like to go down to the 500mg dose but they haven't made a decision yet.  I've been off it for 3 months with no seizures and thought that maybe I was doing OK and then yesterday - seizure.  I should tell you that these are very minor seizures.  I don't lose consciousnesss.  It's just uncomfortable and of course I get nervous and take the meds.  

I know I should be doing everything they say to the letter (that's my normal mode of operation and my comfort zone) but I want to be normal again.  I want to do the things I used to do and not be tied to all these meds.  I had started back at work last July and got a promotion.  I want to stay working and do my job effectively.  The keppra makes me feel like my brain is numb.  I can't think.  I can't exactly work and think when I'm having seizures either.  Not to mention it isn't safe to drive.  I need to drive to get to work so then I need to be on the meds.  Where is the balance?  I can't seem to find my new normal.  I thought the hard part was behind me.  Looks like I'm wrong, again.

Any tips on staying on blood thinners or anti-seizure meds?  I've hit that point where I'm med averse, and procedure averse.  The thought of Tuesday's scan has me tied in knots.



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Richard_K's picture
Replies 4
Last reply 3/4/2018 - 11:51pm

I thought I would check in with a post about how I am doing. It’s been 8 ½ years since my stage IV diagnosis and 8 years today that I started (and continue) taking vemurafenib.  Having all of the common side effects I only continue with two – mild skin rash and photosensitivity.

I was in the phase 2 clinical trial and then transitioned into a phase 4 rollover study that I still participate in.

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foothillfella's picture
Replies 6
Last reply 3/4/2018 - 10:59am

I'm in the midst of taking Mekinist and Tafinlar, for two weeks, in preparation of Opdivo/Yervoy immunotherapy. The side effects of the pills have been primarily fatigue, fever, extreme chills and shivering, aching joints and muscles, especially hips and lower back, difficulty sleeping. About 5:15 Wed. morning, I was on my knees, with dry heaves.

I'm trepidatious about the potential side efffects of the Opdivo/Yervoy treatment. Most seem to be diarrhea and fatigue, but many others alre all over the place. What is the experience of this group?

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daughter1's picture
Replies 11
Last reply 3/4/2018 - 2:51am

Hi Everyone.  My mom has mestatic melonoma in her liver and spleen.  MSK started her on Yervoy/Opdivo combo but after two doses, she was taken off due to her creatinine levels (forgive me if my spelling is incorrect.)   She then continued every two weeks with just the Opdivo and her scans are showing gradual decrease.  We are so happy that there are no new tumors and the ones that she has are slowly but surely shrinking.   Question:  My mother is complaining of horrible joint pain from her back down to her knees.  She has a difficult time getting up and literally had to stop and take a few breaks while walking to the car from the food store.   Have any of you experienced this?   The doctor seemed to be so happy with the scan results because she is responding so well.   I'm a nervous wreck and I feel badly that she is in pain. 



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Bubbles's picture
Replies 7
Last reply 3/4/2018 - 2:39am

Since many of you recently posed questions and noted your experiences with joint pain and arthralgias while on immunotherapy, I thought it might be helpful to offer information to all of you in one place.  First of all, so very sorry for what you are going through!!!!  Secondly, sadly - joint pain is a very common side effect to immunotherapy.  Like most side effects from these treatments, arthralgias can range from a bit of discomfort to completely debilitating pain.  Most of us on immmunotherapy have dealt with them to some degree.  "Jubes" on this forum certainly endured more than her fair share!  You can use the search bubble above to find her posts and information she shared/attained.

Here are some other related threads from this forum:  

Once again....while folks spamming this site with the promise of pass ports and other goodies can post with impunity...if I share more than two links in one post...even ones from this very forum....I trigger the spam blocker!!!  

More below....

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