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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AmyM's picture
Replies 9
Last reply 7/15/2020 - 4:16am

I had posted in April about my dad who was recently diagnosed with brain mets. I wanted to give an update and also ask further advice.
Dad is on targeted therapy enco binni combo & an MRI after 5 weeks of treatment showed shrinkage. It was a satisfactory response but not enough to enable sterotactic radiosurgery. They said they wouldn’t have usually scanned again that early but because I chased it they did which was helpful to see things were moving in the right direction.

Dad was on a high dose of steroids to start and now has been off steroids completely for a week. In addition to the 3 intracranial lesions dad has a Sigatal sinus region lesion and 1 liver lesion. Today we had a review and the doctor said the liver lesion has also shrunk which is great news. An MRI brain is now scheduled for mid July which means he will be 13 weeks on this targeted therapy combo. I am so thankful things are going well and I’m hoping we get further shrinkage to allow sterotactic radiotherapy.

When dad was initially started on the targeted therapy the consultant had said it usually only works for 3 months or so and things would then progress. Immunotherapy wasn’t an option due to high dose of steroids but I’m wondering now as steroids are off should we be thinking about switching to immunotherapy or staying with targeted therapy?
I had expressed my concerns regarding a window of opportunity for immunotherapy and she said we would be continuing on targeted therapy until it no longer worked. Is there people on this forum who are on targeted therapy longer term? I’m not sure if I should be pushing consultant on thinking about switching to immunotherapy as it stands we won’t speak to anyone until end of July. Stereotactic radiosurgery is still on the table if things continue to shrink however when I asked today she said they would usually only use it for people who have max two brain lesions. So I’m concerned he’s already ruled out even if we get all lesions to shrink below 2.5cm. From memory I think lesions are 1.9, 2.3 and, with the Sagital sinus lesion being 4cm.

Dad is feeling great, he’s 56 tomorrow, still working, strong and active so I just want the best treatment and care for him.
Sorry I have wrote an essay! We are being treated in the NHS in the UK.

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THMoore's picture
Replies 2
Last reply 7/21/2020 - 5:15pm
Replies by: Bubbles

I’m am BRAF - for the V600 but positive for the K601E BRAF gene. I am researching and am wondering if anyone in this Forum has the K601E gene? If so, what treatments have you and how are you doing?

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caman's picture
Replies 5
Last reply 7/3/2020 - 1:40am

Has anyone here with stage 3 melanoma, started neoadjuvant therapy and had such rapid and great response from the immunotherapy that you decided to skip the surgery and the removal of nodes?

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Gene_S's picture
Replies 5
Last reply 7/13/2020 - 2:54pm

July is the mark of my husbands 8th NED Anniversary!

He was in a Clinical Trial that started in March 2011 and became NED in July 2012. When he became Stage IV with an
unresectable lesion pushing on the C1 C2 Cervical spine, a few subcutaneous lesions, lesions in the lungs and lesions in the liver.
His trial was Ipi (Yervoy) 10 mg/kg IV for every 3 weeks and GMCSF (self injected every day for 14 days and then 7 days off).
He remained on this regiment until Dec. 2013.

He does have vitiligo of the eyebrows, parts of the beard and face down to the collar bone. He also has a few white blotches
on his arms. His adrenal gland does not work properly and has to take 5 mg of prednisone daily.

If you would like to read more about his journey, which started in Jan. 2008 with Stage III and 4 surgeries later he became
Stage IV, check out his profile page.

Judy (loving wife of Gene - Stage !V and NED for 8 years)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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MelanomaMike's picture
Replies 23
Last reply 7/26/2020 - 11:08pm

Hello fellow Warriors, i hope this finds you all in good health whether it be NED, remission or stable, either or is a victory, and if your still struggling with your team to fight these bastards, keep up the strength that got you this far, i didnt realize the strength i had to endure this whole last 4 or 5 months back when my Sigmoid tumor pain had hours & hours of breaks between them & ESPECIALLY this last 30 days when my tumor pain became a 24 hour torture device, i held on to faith that something good is gunna happen very soon & it did, surgery...
Well folks, where do i began, to start, i made it through what i would call Hell On Earth. Having a tumor, a 4 inch Demonic Mass in your Sigmoid section of our intestine is no joke, especially when my team & i decided to let it be to see if just one more infusion will have shrunk it by a few Centimeters (at the VERY least) but no, story of my life, my OX40 & ICOS combo that im doing in my trial is doing a good job on all my other tumors but not on the big A-hole, same situation with the other 6cm blob on my left side under my ribs remember? Gave us the middle finger, then back in my Pembro, Ipi & Nivo days at Kaiser, my 3inch Demon Ball in my right lower lung lobe defied & gave its middle finger as well while other tumors shrank, disappeared or stayed humble and submissive. Once again i took one for the team cuz, maybe to have the meds take care of it is a hell of a lot nicer then having intestinal surgery which wasnt half bad like i thought, i woke up without a poop bag on my side AND! no staples or stitches! Very small incision to! And he did an "Open" type, not the Laparoscopic type, my surgeon Dr. Mark B. Faires (look him up he's great! he has a write up in the New England Journal of Medicine! He deals mainly with Melanoma) anyways, he said its at a size that he needs to pull out my Sigmoid & cut the section out & solder me back up, he could see why my pain was SOOO Severe, the Demon was wrapping its "tentacles" around the nerves in my lower spine, pushing & shoving its way anywhere it wanted to grow in me, huh, explains the Horrific, constant deep, excruciating, up all night, up all day, crying out in pain i was in! I'll never forget those last 3, 4 weeks after deciding to wait one more infusion (3weeks) the day of the scan the report comes in (they have scanners & readers on premises) that its getting larger, (grew from 7.0cm to 9.1cm in 2 months) surgery is eminent & Dr. Hamid orders it ASAP on June12th at Cedars Sinai, the Mel Demon was extracted & instantly "Relief" was there, well, once i woke anyway, even in my doped up stupor i found relief and cried because of the nightmare it caused me & my wife. Up at night messaging my lower back, heating pad, Naproxins, and the not eating, FEAR of eating, wheres it gunna go? I went from 189 to 140 in a month or so, thats to fast, much to fast, I never used opiates out of fear of even more constipation, at 3 weeks before my surgery, that would be the last bowel movement i would have or could have til "after" my surgery, the mass was blocking 98% a lil' gas could get thru once in a while thank goodness! can you believe that? A lot of the pain to was the feces "pushing" against the 9.1cm mass, trying to move along & out the door, picture a 1inch minimally "flexible" pipe with a 4 inch dia. ball stuck inside of it, yep, that was me in a nutshell guys....
Im so glad its overwith, dont take one for the team like that if yer not willing to put up with the possible pain that could occur afterwards, once it became an every day "constant" pain towards the end, then it got worse, health declined dramaticly..not fun...
But Anyways, ive wrote a novel already, i know i have some fans so, you guys will love a good read haha..iv been healing nicely, ill get back on soon ok? Oh!!!! A quick shout out to sister Chuco! I just met her at our mutual place The Angeles Clinic last Thursday, She heard my name being called out then said "Mike? Melanoma Mike? I was blown away! I wish we could have talked longer, off she went to do her thing & i went to start back on my treatment downstairs, small ya all, and ill be back, you can take that to the bank...

What doesn't kill you only makes you wanna Go After It And Kill It!

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Kim K's picture
Replies 7
Last reply 7/15/2020 - 8:27pm

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 6
Last reply 7/12/2020 - 1:36pm

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 6
Last reply 7/15/2020 - 8:31pm

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 2
Last reply 7/21/2020 - 8:40pm
Replies by: jessica_f, 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 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

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.


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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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