MPIP: Melanoma Patients Information Page

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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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Kim K's picture
Replies 6
Last reply 7/1/2020 - 12:59pm

Hi all, it has been a while since I posted. I am still NED and insurance has long refused to pay for any more follow up. My oldest is now a sophomore and youngest starting middle school. Mom passed away and I have been with a wonderful man for the past 3 years. We are postponing our wedding until there is a vaccine for Covid but will have one heck of a party. (Yes we are doing a justice of the peace thing until then). My brother bought me out of our childhood home after Mom passed and I purchased a 45 acre parcel to move and expand our farm. Best part, no neighbors! It is also in lava zone 3 and only 12 miles from Hawaii Volcanos Natl. park where it is nice an cool most of the time. Once and a while I check in and hope to see my old-timer friends like Carole Kelley! Aloha All!

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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Lrazski's picture
Replies 5
Last reply 6/30/2020 - 7:14am

Hello all,

This is my first post here, however in the past few weeks I have visited quite frequently to learn from all of your helpful posts and comments!
I am currently considering participating in the Keynote 716 trial, which is testing the effectiveness of treating stage 2B/2C patients with Pembrolizumab(Keytruda) adjuvant therapy. I haven’t seen much on here about this trial so I wanted to see if there are others out there considering this for their “high risk” stage 2 melanoma. Some background on me is below. I also would love any input from those of you who have been treated with Pembrolizumab in terms of side effects and things like that. I welcome any of your opinions! Thank you :-)

About a month ago I was diagnosed with superficial spreading Melanoma on my back, biopsy revealed it was Breslow thickness of 3.2mm with ulceration, making it stage 2B. WLE had clear margins and SLNB came back negative, confirming the stage 2B diagnosis. I also had the decisiondx castle testing done which classified it as class 2B, the highest risk of recurrence (50% chance of recurrence within 5 years). I am 26 years old so I am also trying to weigh the infertility risks of the adjuvant treatment since there is not much data on those risks yet.

More about the trial.. 50% of patients will receive Pembrolizumab and 50% will receive a placebo. It is a double blind study so neither doctor nor patient will know if they are receiving the drug or placebo. Treatment will be about every 3 weeks for a year.

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TimCT's picture
Replies 5
Last reply 6/29/2020 - 5:56pm

Hi Guys.

In my never ending quest to find good news about my health, I'm wondering about vitiligo, and whether or not it's showing up on my skin.

A few weeks ago, after spending some time in the sun, I noticed white blotches or various sizes on my forearms. At the time, I chalked it up to scarring from a particularly bad case of poison ivy I had about 2.5 years ago. The blotches aren't that big, they look like the size of a scab that previously occupied that area.

But now I'm wondering if thats 100% the cause, because neither I or my wife remember seeing these blotches last summer.

Would immunotherapy triggered vitiligo go after areas like this first perhaps? I can't seem to find any info specific to this, and my apologies if this is a ridiculous question. I'm going through a tough time of progression 5 months after my first ipi/nivo infusion and looking for any sign of a response. I've noticed a few new grey hairs in my beard too, but that could be from just about anything!

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JackieH's picture
Replies 1
Last reply 6/28/2020 - 8:31pm
Replies by: Mark_DC

I was diagnosed in 2002 stage 2 and have been NED and healthy until this month when a lump I found in my groin was found to be positive for melanoma . I am a week post op ( both inguinal and iliac nodes removed ) and will go on Pembrolizumab (Keytrudra - I live in Uk) for a year.

My oncologist tells me it is rare for it to spread so many years later ,but it happens. He reassured me Melanoma treatments have progressed beyond recognition since my first primary 18 years ago and I feel optimistic. Over the years melanoma sank to the back of my thoughts but I never became complacent( so pleased to find this site is still running and so supportive). I hope my post doesn’t scare anyone but it is a shout out to be vigilant with your body so you recognise changes.

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Tsvetochka's picture
Replies 6
Last reply 6/30/2020 - 7:09am

After going from Stage 4 to NED on Keytruda, what are my chances of reoccurance? There are so many different numbers out there that it's hard to even guess.

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

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sing123's picture
Replies 4
Last reply 6/29/2020 - 9:53am
Replies by: sing123, Bubbles, Johnjk04

Greetings, dear ones. I will be done with the SRS next Wednesday. My local oncologist does not consider the Opdivo that I took for a year to have been a fail since the cancer has not come back in my lymph nodes or for third time on my scalp or at all elsewhere.

My Melanoma Specialist, however, did call it a fall. I am eligible for the BRAF combo and this what he recommends.

But so many other seem to be getting the recommendation that they go on a combo Immuno treatment, and as you have said Celeste it can have a really nice synergistic boost with recent radiation.

I am really at a crossroads. I know that the combo immunotherapy’s can carry a great number of side effects, and I listened with great interest to a podcast by Dr. Jeffrey Weber when he said that they are working on reducing the toxic side effects of them in a therapy given at the start of treatment with what he called an antibody.

This however is not yet available. And as several others have indicated here recently, I also have young children. And not much time to ponder.

Have you any advise? Thanks all.


Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo, finished Opdivo in March 2019

I'm Still Here!!!

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Juan Arias's picture
Replies 9
Last reply 6/30/2020 - 7:07am

Dear all,

Summary; Metastatic agresive BRAF melanoma. 6 months of treatment with targeted therapy Taf-Mek, begun Dec 31 2019.
The good news are melanoma has shirnked about 70% in all my body (Met in liver, lungs, pancreas, kidney, cutaneous, etc. I was really f#$$ed up)

However after a MRI a couple of Indeterminate brain lesions, 2 & 4mm appears (cerebellum)..... Onc says we must to use radio surgery immediately.....Sincerely I'm not comfortable with situation but prefer wait and see again in 1 month with other MRI.
Any suggestions from someone with a similar experience?

Thank you in advance and keep safe.

Juan Arias

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Summer S.'s picture
Replies 4
Last reply 6/27/2020 - 5:47pm
Replies by: MelMel, Joyk, gopher38

Hi everybody,

It is our next cycle of keytruda - and it is combined with the chemotherapy protocol we have been on for 8 cycles (cisplatin + velbe + DTIC)

After the first session, it caused serious fatigue, muscle pain and heavy feet

After the second session, muscle pain/ inflammations got worse and heavy feet became havy legs - problems with walking/ standing and it is started going up to hands, cannot hold thIngs properly

Doctor prescribed dexamethasone and off to hospital for scans and tests

I keep thinking to myself maybe it is the immune system doing its job? Even though it looks scary now

Does anyone have experience with that?

How did you manage? Did you discontinue the medicine or reduce dose?

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MarkR's picture
Replies 12
Last reply 6/30/2020 - 3:17am

I haven’t posted in a while as things have been getting quite difficult and needed a break. Have been on the Ribociclib/ Spartazimulab trial and scans 8 weeks ago showed some growth in groin node, shrinking in lung and stable liver. Went for MRI / CT on Tuesday and unfortunately it showed up 7 brain mets the biggest of which is 1.5cm. Was a bit of a shock!!

We were lining up a TIl trial for me but the brain mets rule that out so not many options for me. I plan to start Temolozimide on Monday and should have a view from the radiologist for what they can do tomorrow. It seems I need a period of stability to join any form of trial so hoping this can all work in combination to give me some results. If it doesn’t they have given me 3-6 months. With young children this is all a bit grim.....

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Hello there, thank you in advance for any help.
My sister had stereotactic radiation for a brain met and is also having Ipi/nivo combo. She is so down, has the driest mouth, is hungry but can’t eat, feels nauseous, she is taking anti nausea meds but can’t tolerate food although she wants it.
Can anyone offer any tips or trick, we have tried sugar free gum, ginger drinks and cortisol ,no help.
She is losing weight, weak and down in herself. I would appreciate any help anyone in a similar situation could offer . Thank you

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sj's picture
Replies 6
Last reply 6/25/2020 - 5:10pm
Replies by: Summer S., Sdmotorcop, sj, Edwin

hi folks,

I was diagnosed with stage 2B back in January. I had melanoma ex cellular blue nevus in my scalp. This was successfully removed via surgery, and my lymph nodes were clear as well.

In April I developed some hip pain. I put this down to not being as active due to COVID-19. I was no longer golfing and was sitting for large periods of the day.

As the months have gone by the pain has gotten worse. At the end of April I bought a Peloton bike, and I've cycled close to 300 miles and lost 16lbs or so.

The hip pain still persists. Actually I played golf a few weeks ago and I noticed the pain was gone for a few days after golfing (and I'm golfing tomorrow again so I'm interested to see how I am afterwards).

I have my 6 month CT scan next week, with results on July 6th. They will be scanning my pelvis so if there are bone mets in my hip they'll be able to see it.

The pain is in my hip flexor which is common for cyclists, but the pain did appear before I got the bike so I'm not sure if cycling is just making it worse or if it actually is bone mets or not. I'll find soon I guess.

My question for anyone that had bone mets - did you have bone mes without any other metastasis? I was under the impression that bone mets were a sign of advanced cancer, and that it would typically end up in your organs first, but perhaps that's not the case.

Also, for anyone with bone mets did it hurt? The pain I feel honestly feels muscular. I only really feel pain when sitting or getting up, but if i'm walking or even cycling I don't feel it at all then.


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Sdmotorcop's picture
Replies 3
Last reply 6/25/2020 - 12:33am
Replies by: MelMel, Sdmotorcop, TimCT

Hello All,
I hope all of you warriors are fighting the good fight! I know I am..

I started ipi after my progression to stage 4. I had been on Nivo since last June and almost made it to the 1 year mark. After my second dose of Ipi, I noticed these transient fevers (the wife says I’m going through menopause). They were short lived and never went higher than 100.2. I received my third dose of Ipi two weeks ago. The fevers seemed to go away for that two week period of time. Last Friday I felt one of those fevers coming on. This time it went to 102.6 and stayed there until I took some Tylenol (500mg). This brought it down to a manageable 100.. The Tylenol only lasted for a couple hours. These fevers start around lunchtime and continue throughout the day. Nights are fun because the fever sort of breaks around midnight. The sweats that come along with the decrease in temperature are a fun way to sleep (can you say soaked. Aside from fever, there is a fairly substantial amount of body aches That comes along with it also. I’m set to receive my 4th dose on Friday.

I did a search and found a couple of postings for fever related side effects for ipi. It did not go into the Tylenol / Motrin Question I was looking for. My oncologist wants me to do 325 Tylenol then 400 Motrin every 4 hours. I tried that combo yesterday and was stuck with a temp around 101.

I was thinking about going with a longer acting ibuprofen like Aleve. The yo-yo effect between the Tylenol and Motrin is pretty hard to regulate.

The posts I located from other warriors were from around 2017. I’m just wondering if there is anyone else going down this road while on ipi.
(All labs came back pretty normal. Liver labs actually went down along with T4 labs)..

Fighting melanoma since 2004..


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tracievh's picture
Replies 10
Last reply 6/27/2020 - 12:01am

I was diagnosed with nodular melanoma Feb 28th 2020. It was on the back of my leg above my knee.
I had a PetScan prior to surgery which was clear.
Had surgery March 13th - WLE and SLNB. WLE had no margins, there was a very small amount of cancer in the lymph-node. It did not exit the lymphnode but I was told that did not matter. This bumped me to Stage 3A. (From 2A)
I am positive for the BRAF mutation.
I started Opvido just one week later from surgery.

I have had 4 treatments so far. I will receive 12 total. No side effects thus far. No new lumps or skin lesions. (I just saw my dermatologist a few weeks ago who did the skin and lymphnode check)
Because of this, my oncologist wants to wait two weeks before my 6h treatment to do a CT Scan.

First Question: Does that sound right on the scan? 6 months if no new concerns?

I am still healing from the surgery. The SLNB site developed into a seroma that got infected. Had a drain a for a while. I had a skin graft about 5 weeks ago now. It is doing okay, but there are two holes that have not filled in and I have another seroma below the wound right in the crease of my knee.. I see my surgeon this week.

My oncologist said that if I tolerate all 12 treatments and have clear scans, he would consider me cancer free. After all the reading I have done, I am struggling to believe that.

Second question: Do most Stage 3 melanoma diagnosis eventually have a recurrence?

Third question: I am terrified to be in the sun now. Can we be in the sun with sunscreen on? I am not talking about baking in it all day.
We live in a location where we have a very short summer, and we like to go boating. I feel like I can't even sit in the sun at all now. (With sunscreen on!) I have on history of a bad sunburn when I was a teenager where I fell asleep on my back. Other that, I have had some sunburn on my shoulders and chest, but nothing like a blistering kind. I DID use tanning beds to get base tan because I am fair skinned - which I will never do that again.

Thank you in advance for any help!

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THMoore's picture
Replies 13
Last reply 6/27/2020 - 4:22pm
Replies by: MelMel, Mark_DC, THMoore, Bubbles

I had a reoccurrence in my neck just two weeks post radiation and surgery. I have 5 extremely small active nodes that can’t be felt and 1 node that is pea size. I just received my second monthly infusion of Opdivo. So it’s been once month exactly since starting. I have no side effects except a little tired. I keep feeling my neck to see if the node is getting smaller. I was wondering how long it took any of you on Opdivo or Keytruda started to notice a difference? I asked to be put on TVEC or the combo IPI but MDA said to stat the course. Getting very anxious. Thanks everyone


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Scooby123's picture
Replies 8
Last reply 6/19/2020 - 1:04pm

Hi all hope you are well as can be. Just update you my scans back still NED been on treatment nearly 3 years. Oncologist said I can choose to stop but able to re start if returns. Keydruda is treatment I been having. Part of me nervouse but also be nice to have a break. .


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