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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johntmcdonnell's picture
Replies 1
Last reply 7/14/2020 - 10:06am
Replies by: Gene_S

Eight tumors completely wiped out by Yervoy. Still in remission nearly a year later. First course of Opdivo prior to Yervoy produced vitiligo. on arms, hands, and legs. Yervoy caused white eyebrows and lashes. I started getting what looked like age/liver spots on hands, arms, and legs about 8 months ago. These spots are now so prevalent that they cover everything but my trunk and face/neck so completely that I look like a mutated giraffe. Both oncologist and dermatologist think that this is re pigmentation of previous vitiligo areas. Personally, I think that they have no idea what it is. Has anyone heard of this condition (or experienced it)? Both docs agree that the spots, which now number in the thousands (no exaggeration and many areas have merged into large light brown patches of skin) aren't dangerous. While certainly grateful to still be in remission, i certainly wouldn't mind my skin going back to "normal". Thanks for feedback.

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

Hey,
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 3.1.cm, 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.
Thanks,
Amy

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boatski's picture
Replies 4
Last reply 7/15/2020 - 1:03pm

Hi all,

I'm still in the relatively early stages of watching out for recurrence. In march I had a WLE and SNLB (negative) for a 2b melanoma on my ear. I'm vigilant about watching for signs of melanoma but am still so confused. I've been to numerous doctors and oncologists. I'm trying to learn what to watch for and what to worry about. They basically all say that anything can be a sign of melanoma, which is not super comforting. I've been worrying over red spots as now I am getting them due to summer and covering my skin more when I exercise. I have a derm appointment next week but was looking to get some early thoughts. I have a newer red mark below my collar bone near the center of my chest from late last week that is very slightly raised - much smaller than a grain of rice. It seems to react to hydrocortisone cream and becomes less red until I irritate it exercising. I had another bump like it somewhat near by that I can still kind of see but is no longer red and has drastically shrunk in size.

I'm going to ask the derm next week but I was wondering
1. would melanoma react to hydrocortisone and become less red?
2. could in-transit or distant metastasis become smaller?
3. is raised the big cue for melanoma recurrence? It's tough because my skin is so sensitive that i get lots of red irritation marks that are not really raised.

Thanks all.

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MelanomaMike's picture
Replies 6
Last reply 7/15/2020 - 4:54pm
Replies by: MarkR, ed williams, Anonymous, gopher38

TIL PROTOCOL IOVANCE C-144-01 - Phase 2 Study of Cell Transfer Therapy Using Autologous Tumor Infiltrating Lymphocytes (LN-144) Followed by IL-2 for Treatment of Metastatic Melanoma [NCT02360579]
"Please go to TheAngelesClinic.com and read this, it sounds like they may take you Mark, it reads brain mets are under exclusions but then says the following":
Patients with symptomatic and/or untreated brain metastases (of any size and any number)
Patients with definitively treated brain metastases may be considered for Enrollment, and must be stable for ≥ 14 days prior to beginning the NMA LD preconditioning regimen.
"I didnt catch if your BRAF positive but heres what it says"....
Patients who have been shown to be BRAF mutation positive (V600), but have not received prior systemic therapy with a BRAF inhibitor alone or a BRAF inhibitor in combination with a MEK inhibitor
I hope you can get over here to the US no matter what state, Texas has great doctors to!, just as world renowned as my doc Dr.Omid Hamid!

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Jubes's picture
Replies 11
Last reply 7/15/2020 - 8:19pm

Hi All

I haven’t posted for a while., but I think of you all
often, especially Les, and wonder if she ever made it to Italy...

I am still NED since my lower lung lobe resection in Nov 2016

I am taking Humira every three weeks for arthritic side effects and it is working just fine

I hope you are all hanging in there. We live in amazing times with fabulous health professionals.... at least those of us lucky enough to live in first world countries

I hope the Covid virus has not set anyone back. Time has stood still here in Australia while we try to get on top of it. And in many ways I love that! No traffic no pollution. No traffic accidents! I’ve been playing golf and practising my instrument. No one can travel so there’s no FoMo.

All the best

Anne-Louise

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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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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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Mismich76's picture
Replies 4
Last reply 7/16/2020 - 4:21pm
Replies by: lbd, AmyM, sandyd77, Bubbles

Anyone on or has been on Mektovi / Braftovi? How did it work and any side effects you can share with me. I will start both on Monday, June 13, 2020. Thanks

misty crocker

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KAF's picture
Replies 18
Last reply 7/17/2020 - 6:42am

HI all,

I have been one of the lucky ones who, after being diagnosed stage 4 in May of 2016, has had a full response to the drugs (3 x opdivo/yervoy, opdivo every 2 weeks since end of Oct 2016).  I have had the rashes, blown up pituitary 2x, vitiligo, swollen joints, etc... but I'll take it all for the amazing response I've had to the drugs.

At my opdivo appointment today my doc informed me that she had gone to a conference 2 weeks ago and new data shows that being on Opdivo for one year after full response is sufficient but some docs still feel that 2 years is optimal.  She is not making any rash decisions but we were going to discuss again in a couple of weeks.  Does anyone have any knowledge about this or can share what they chose to do?

 

thanks

karen

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Hukill's picture
Replies 1
Last reply 7/17/2020 - 12:09pm
Replies by: Bubbles

It has been 4 years since PET scans found 7 tumors in my lungs, Started the ipi/nivo combo and was NED at 1 year but continued on maintenance for 14 months and decided to stop as new evidence was showing maybe no improvement. This month is 3 years NED which is great but still fighting multiple side effects with fatigue being a never ending thing. My oncologist prescribe me Ritalin today as some research has shown this helps some patients with severe fatigue. Will see in the next couple of weeks. Good luck to everyone dealing with this nasty monster.

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THMoore's picture
Replies 5
Last reply 7/19/2020 - 8:46am
Replies by: tedtell1, THMoore, caman

Looking for patients that are BRAF + plus No Primary that have had success with OPDIVO. Can you please share your story. I need a little positivity after receiving my latest scans. Thanks Trent.

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Shelby - MRF's picture
Replies 2
Last reply 7/20/2020 - 10:55am

Dear MPIP Community,

Our partners at OncoSec are looking for a cutaneous melanoma patient or caregiver to share their story as part of a virtual media tour. At this time, they are looking for a patient and caregiver who:

  1. lives in the Northeast area of the U.S.
  2. has participated in a clinical trial

If this opportunity is of interest to you, please contact me at smoneer@melanoma.org so that I may share your contact information with the OncoSec team. Thank you!

All the best,

Shelby - MRF

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Dear MPIP Community:

I wanted to share a few opportunities for you to get involved in the fight against melanoma!

The first is with our partners at OncoSec. OncoSec is looking for cutaneous melanoma patients or caregivers, who have participated in a clinical trial, to share their stories and experiences. They are looking for people in the following cities/areas: Northeast/Boston, Northern New York, New Jersey, San Diego, Philadelphia, Houston and Chicago. The goal of the media tour is to increase awareness of and participation in clinical trials. If you are interested in the virtual media tour, please email my colleague, Lorrie Miley, at lmiley@melanoma.org

The second is with our partners at Pfizer. Pfizer is hosting a virtual advisory board on Friday, August 21, 2020 from 4-5:30pm ET. They are looking for cutaneous melanoma patients and caregivers to participate in a virtual discussion so Pfizer can learn more about the general patient experience. I will moderate. Participants can live anywhere in the U.S. After the advisory board is held, all participants will be given a $25 gift card for their time. In an effort to have a diverse advisory board, all interested patients and caregivers should fill out this survey ASAP:

https://www.surveymonkey.com/r/FMZ9LQN

If you have any questions about these opportunities, please don't hesitate to reach out to me at smoneer@melanoma.org. As always, we thank you for your time and committment to helping us better the melanoma community.

All the best,

Shelby - MRF

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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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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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