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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Irishone21's picture
Replies 6
Last reply 3/9/2018 - 10:46pm


I was dx with stage 1 melanoma in Sept on my right arm.  I have had a lump on my scalp for a good year or two. The PA I see at the derm office says its just a cyst. I feel like she barely looked at it. 

I was willing to let it be but since the melanoma dx, I'm thinking I should have it biopsied/removed just in case. Has anyone here had anything similar? Is it possible it could be melanoma?

Any thoughts would be appreciated.


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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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Nick C's picture
Replies 6
Last reply 3/6/2018 - 9:03pm

Hey to all you warriors...

Had a scan on Friday...showed "mild progression". Went in for my weekly treatment today, thinking I would be out of the trial (especially when I didn't get called for a blood sample). Took my vitals, and then met with my OC.

Although there is still progression, he said I could finish out the cycle, if I wanted to and we would make a determination after the next scan on the 6th. Of course, I said let's go for it.

Trying to get to Virginia to see my new grandson...trip planned last week was canceled because of my Shingles outbreak (which are clearing up nicely). Now it looks like the second week of April. At least the weather should be nicer.

Take care all and keep fighting.


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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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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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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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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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Ridingaroundwith27Jennifers's picture
Replies 14
Last reply 3/10/2018 - 9:41pm

Hi All,

Just wanted to share that after a very long and intense year and 5 months of very scary ups and downs with this disease my last CT scan showed only ground glass areas.  The oncologist was happy to announce she considers me NED!  She then told me that since I had the brain tumor the last time I was off treatment that we needed to continue with the Opdivo at least another year.  

Despite the great news I'm hesitant to be too happy and reluctant to consider myself in the clear.  I worry that this will not be my last dance with this devil.  I'm still bearing the scars from the brain surgery and radiation.   My right foot is still numb from the crainiotomy.  I'm still not mentally whole.  

Thanks to all of you who have helped me carry on and stay strong.  Your guidance and support have meant the world.  To those who feel like they are in the worst of it please stay strong and keep fighting.  May your NED diagnosis be just around the corner.  

Good wishes to you all,



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TexMelanomex's picture
Replies 11
Last reply 3/7/2018 - 5:45pm

Hey Warriors! Just wanted to give a quick check-in after surgery yesterday...Surgery was completed and no skin graft was necessary much to my delight (quick recap, this was to remove the lymph nodes and tissue destroyed by PV-10). I was thinking this would be a small incision (few incisions), wrong was I! I have about a 10" diagonal scar from my shoulder down into my pec, and in fact a deeper incision was made into my pectoralis major and minor on the left I have this ever so sexy battle scar to compliment my skin graft on my head, lymph node dissection scars on the back of my head and neck, as well as the donor graft site on the back of my leg! I feel like I'm getting pretty good at this surgery thing!

What is a Warrior without plenty of battle scars? :-) The bad heavy lifting, push-ups or much of anything other than stationary bike for about 6 weeks while this heals :-(

Anyway...all is well, resting in the hotel in Houston, doped up on Norco, doing some healing and waiting on round #8 of Pembro on Tuesday. I hope you are all battling hard and staying deep in the fight!

Warrior On!



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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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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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brianm's picture
Replies 3
Last reply 3/14/2018 - 6:34pm
Replies by: jrtufo, Sharon93065, Bubbles


I'm writing this as to give some hope to some people.   I had a mole removed about 6 years ago that was 1A. They followed the lymph drainage down and sampled that node, it was clear.  Had a carefree life for about 6 years until I started an incessant light cough and started to lose weight.

My wife noticed a lump in my chest and I went to the Melanoma clinic I was seeing and they took out the lump and then a week later I was diagnosed with melanoma.   I had a large tumor (12 cm) on my left lung, Two tumors on my pancreas, one on my liver, and then some other places around the heart and within my gut.

My doctor wanted to see if it was B-RAF and we waited a couple of weeks for the results.  During that time (within about 3 weeks), I progressively got worse.  The first thing that happened is that I got really sick and threw up at work.  That pulled a tumor out inside my gut and caused internal bleeding.  I got a follow up CT scan two weeks after the first one and it showed a few tumors had grown 4cm since the first cat scan.  It turned out that one of the tumors was putting presser on a bile duct and I was Jaundice.  They put a stint in the bile duct and that got better and we decided, since the cancer was so aggressive that I would begin a treatment immediately.

They put me on Nivamb and Obdivo together.  A few weeks after the first treatment, I found myself in the hospital again (with another CT scan).  The CT scan showed more growth (and I was feeling it).  I live at 5200 feet and it was getting harder to breathe.   The doctor at that time said it hadn't been enough time for the treatment to work.  I could see in the ER Doctor's eyes (all of them) that they knew I was dying and it was pretty bad (as they reviewed the CT scan).

I noticed a  bump developing on my shoulder about the size of a small marble.  Also one some other places in my groin.

I made it to the second treatment and a week or so after that one I ended up in the ER again.  With another CT Scan.   This CT scan was a breakthrough in my hope as it showed almost no changes in tumor size.  One tumor went up 2 cm, one went down 3 cm.   At that point, I felt that the progression had been slowed and I actually had some hope.   

I took the third treatment (you are only allowed 4) and I ended up in the emergency room again (It turns out I got my first kidney stone!).  Of course, another CT scan.    I had noticed I could not find the lump on my shoulder anymore.  It was gone!  I was joking about it because that was how I could tell if the treatment might be working without a cat scan, by just feeling that lump.   This last CT scan showed significant tumor size reduction.  They said my pancrease was grossly unremarkable (meaning they didn't have much to say).  The lung tumor had reduced to 5cm.  (I was not not coughing)

I had my 4th treatment (sufferring through the side affects) and I'm not sure where I stand.  I won't get a CT scan until May and they put me on an obdivo every two weeks type of thing.   

As I've read here, I am dreading the day when it returns and I know how much fun it was to almost die from it.  I was getting pretty bad.  I lost 70 lbs. since the diagnosis and am normal weight now.  I still have alot of stomach issues, I virtually have no muscles, my thyroid is shot (I will soon take meds for that).  My liver is still healthy and they told me it was unusual for people to make it to the 4th treatment without having to stop because of the liver damage.

I have much to be thankful for.  My hemoglobin (I think that is the measurement) went down to 8.1.  They say they would need to give me a tranfusion if it went lower.  The next treatment 3 weeks later it went back to 12-13.  I consider that a miricle as they were telling me that would take months to recover.

All of this has happened in a 3 month period.  I went from almost being on hospice to being back at work and functioning.  The treatment has bought me more time to prepare my family and get our finances in order, but I just wonder what life will be like now?  I hope my stomach doesn't always hurt, have lots of gas.  I hope I can get strength back to do work around the house......


My hope to others is, that if the immunology works, it may start as early as 4-5 weeks and can work very fast if your body/cancer is responding.   I will study this forum for those who have had reoccurrances and how they deal with it.  Perhaps this is just buying time until they learn more about this cure and can make it less damaging as far as side affects.

One more not about side affects.  They were hard, but I always thought about people who took real chemo and radiation and how sick they became.  I count myself as fortunate not to have to go through that.


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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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Scooby123's picture
Replies 10
Last reply 3/7/2018 - 4:25pm

Hi Guys,

i have got a awful sinus and windpipe issue at moment. I swim and it effects my sinuses . I have struggled for a week taking pain killers to try and help. Due to not helping I went to my GP she checked me over and sats was good apart blood pressed up slightly. She contacted the hospital to ask them what they would like her to do.  With it been a Friday she could not do blood check. They told her to give me antibiotics. If I feel worse call hospital. 


Anyone had atibiotics when on treatment did it effect blood results or did they delay treatment.



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REBECCAW's picture
Replies 1
Last reply 3/2/2018 - 4:19pm
Replies by: sister of patient

I finally went to the GP as I have loads of moles and I have always known a few don't look the same as the rest (different colours and asymetrical). My GP referred under the 2week rule and I was seen by a dermatologist within a week. Two consultants agreed that the moles looked different to the rest and that they should come out. I was told they like to do it quite quickly. I mentioned that I had a trip booked in 10 days time for 2.5 weeks and they said they would try to work around it. I didn't hear back so I phoned and was told I had an appointment for the biopsy whilst I was due to be away. They then offered me an earlier appointment but this was the day before I was due to fly. I queried about the recovery period and they said they would speak to the surgeon and ring back. The next day I got told that they couldn't do it before my trip as I then wouldn't be able to travel so they would book me in for when I get home. The earliest appointment they have is after Easter. I am going crazy thinking of an almost 5 week wait just for the biopsy. I'm considering cancelling my trip, although they didn't seem to advise me to do so. I'm very confused as to what to do next. The consultant didn't say much in the appointment, Just that they looked very different and both recommended not taking a wait and see approach and just to remove them. The wait is driving me crazy. I feel even if I cancel my trip I might not get an appointment sooner.

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