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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ljohnston's picture
Replies 1
Last reply 10/18/2020 - 5:57pm
Replies by: mrbill16323

Hi all!

The MRF has a great new webinar on BRAF Testing by Dr. Jason Luke. Please feel free to take a look! This is two part series, and the next one will focus on the myths around genetic testing and BRAF.

https://event.on24.com/wcc/r/2605791/8E028BA59EE297FABD456BF3E191F839

Lauren Johnston, MRF-Program Officer Rare Melanoma Subtypes

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Hello all!

For those in the OM World, there is a survey the MRF is conducting.
This Patient Oriented Survey is part of our patient advocacy program, and was designed to gather information from patients on the current state of diagnostics, treatments and outcomes for OM. The information gathered from this brief survey will be used to identify gaps in coverage and ensure that treatments, diagnostic testing and surveillance are fairly covered by all insurance plans.

The survey link is below:
https://www.surveymonkey.com/r/GFQY7XQ

For questions, please contact ljohnston@melanoma.org

Lauren Johnston, MRF-Program Officer Rare Melanoma Subtypes

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sing123's picture
Replies 6
Last reply 10/13/2020 - 3:28pm

Happy weekend, all. I have still only had My first of four infusions of the Ipi/Nivo combo due to continued brain swelling from recent SRS and need to be on Dexamethasone and now after a number of symptoms a diagnosis from the melanoma specialist that I am having late onset side effects from the first (and only!) infusion. He put me on 60 mg of Prednisone for 2 days to tamper down the autoimmune issues and now am on a very slow taper off the Prednisone for 30 days. Knowing that steroids can have their own host of bad effects on the body, what can I do to mitigate this? Am doing frequent exercise, have gone off coffee and am drinking tea while taking pepcid with my daily steroid, and work to maintain a pretty good high fruit/veg/fiber diet. What else can I be doing?

Cindy

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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Alli's picture
Replies 4
Last reply 10/12/2020 - 9:42am

Anybody still out there?? It's been a while.

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THMoore's picture
Replies 7
Last reply 10/10/2020 - 9:38am

I just read this article. I understand it to say that that taking IPI/NIVO after complete tumor removal has no better survival then NIVO alone. Can all you melanoma peeps review this and give me your thoughts? I had my tumor removed and only had a partial response to NIVO. Now I am on the combo. After reading this, I almost feel like I am screwed. Please let me know. Feeling depressed now.

Thanks. Trent

https://www.fiercepharma.com/marketing/bristol-myers-squibb-snags-new-op...

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MarkR's picture
Replies 2
Last reply 10/9/2020 - 8:29pm
Replies by: Bubbles, gopher38

Hi All
Been meaning to do an update on progress but it has been a little hectic of late.
After the Brain Mets diagnosis accompanied with the 3-6 month prognosis they gave me SRS to the 14 brain mets and started me on Temozolomide. The first scans were encouraging which showed a good partial response and then I had a follow up MRI and PET scan 4 weeks later that showed a continuing response, but a bit slower this time. All good news but they keep telling me the chemo is only likely to work in the short term.

As you know I was looking extensively at TIL and had narrowed my hospital choices down to the Sheba Medical Centre in Tel Aviv, Israel. I flew out here last week and met with Dr Nathanel Asher who runs their TIL program and he gave me three potential options - TILS, a Micro Biome trial (making use of the gut bacteria from good responders to immunotherapy) and a new trial they have that is similar to kidney dialysis. Essentially they remove a blocker from the blood that improves the immune systems effectiveness against tumours. Not all of these are currently open to Non-Israelis and his view was that as the chemo was working so well for me to stay on that for now. I have chosen to progress with TILS for now and had surgery out here on Tuesday to remove a lymph node from the groin for TIL harvesting. I am still out here in a very nice beachside apartment waiting for them to confirm the sample is OK before I fly back home to the UK. When I return i will have 6 weekly scans to closely monitor progress and as and when things deteriorate I can come back for either the Micro Biome trial or to complete my TILS. Dr Ashers view is to try the Micro Biome trial first and if that isn’t successful go for the TILS then. Unfortunately I have to pay for all of this so we will see how far the money will stretch. The TILS program is about $120k and I have just paid $10k for the surgery so am hoping those TIL cells are viable!!!

The Micro Biome trial has shown an ORR of 30% in a phase 1 trial, but it means fortnightly visits to Israel to take tablets and have Nivolumab infusions. I think it is going to be too expensive for me to be honest as Nivolumab is so expensive. Will keep you updated on progress

Hope everyone is keeping well
Best Wishes
Mark

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THMoore's picture
Replies 8
Last reply 10/9/2020 - 10:45am

Finished my second infusion 8 days ago. Now I’m having severe headaches and other symptoms. Told MDA and they gave me the list of side affects. They explained that if my headaches get worse, they want to scan earlier. My question is, I am taking Advil and the headaches go away fairly quick, but come back not as bad. If there are tumors or lesions in my brain, are the headaches constant of do they come and go ? I do know that headaches are part of the symptoms list, just asking what all of you that have gone through this know

Thanks Trent

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Rick from NC's picture
Replies 8
Last reply 10/9/2020 - 12:55am

On this date in 1992 I had just returned from my followup visit to NIH after 3 rounds of IL-2 where I learned that I was a complete response to treatment. I knew that I was responding well to the IL-2, and it was thrilling to be able to feel my last SQ tumor grow smaller and eventually disappear. I had had mets to both lungs and numerous subcutaneous tumors. For several years, I worried about recurrence, but I learned that at some point a recurrence was unlikely. I was 35 when diagnosed; now I'm 64.

Since then, I've not had any more melanomas. I have had several basal cell carcinomas, including 3 which required Mohs surgery on my face, but they had very nice cosmetic outcomes and haven't recurred.

I've been following this board for many years now, and it's exciting to see the treatment of advanced melanoma progress. I know that progress sometimes seems too slow, but there are more folks surviving now than back when I was diagnosed. I fully recognize how fortunate I was, and I continue to be thankful. I hope you see me as an example of long term survival after a dire prognosis.

My best to all of you.

Rick

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Aarti007's picture
Replies 2
Last reply 10/8/2020 - 1:32pm
Replies by: gopher38, hxcadam

Hi all, so my SO has stage 4 melanoma and has been on Braftovi and Mektovi for a few months now. Let me just say this has been a harrowing experience and I send everyone going through this lots of love and high hopes. You all are warriors ♡

Unfortunately symptoms of my SOs cancer are showing back up (extreme nausea, vomiting, stomach pain, poor appetite) and we are thinking he may be resistant to mektovi and braftovi now. We have an MD appointment tomorrow with our melanoma specialist but I was wondering if anyone knew answers to my questions below...

-once someone is resistant to mektovi and braftovi does that mean they are resistant to all other forms of BRAF/MEK inhibitor drugs? Or could they be placed on other similar drug like Taflinar or Keytruda?

-is radiation ever used as a last resort to treat liver mets?

Thank you for any insight. Other thoughts and suggestions welcome. Especially anything that might be helpful to bring up to MD ♡

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I am so pleased that effective adjuvant therapies are available for more melanoma peeps. This morning I put together a post on articles that report 5 year outcomes for debrafinib/trametinib, 3 year follow up on pembro (Keytruda), and outcomes at 4 years for ipi (Yervoy) and nivo (Opdivo) when used as adjuvant for melanoma patients. Many previous reports on adjuvant therapy are linked within. Since many of you are actively on that path, I thought it may be of interest. Here's the link if you are: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/10/new-fo...

Wishing you all a safe and peaceful weekend. Wear a mask! Be well. - celeste

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Today was my first oncology doctor visit, with Dr. Ding Wang of Henry Ford Hospital. The Scalp Wide Excision and SLNB pathology results were discussed and treatment recommended and being booked. I'm sharing this info to help others who may want to learn from my journey. My good news for today was no metastisis in my lymph nodes detected. The less positive news was that the removed melanoma was down to the subcutis level. Reconstruction surgery is a go for tomorrow October 2 with Dr. Garcia-Rodriguez of Henry Ford.

The pathology report:
of 19 lymph nodes (17 Sentinel) biopsied , they were all negative for metastasis
The nodular tumor Breslow Thickness: 7.5mm
Macroscopic Satellite Nodule: not identified
Ulceration: present
Anatomic Clark Level: V (invades subcutis)
Microsatellites: Present
No identified invasion in Lymphovascular, Neurotropism. No Tumor-Infiltrating lymphocytes
No identified Tumor Regression
Margins:
PERIPHERAL MARGINS: negative for invasive melanoma
DISTANCE OF INVASIVE MELANOMA FROM CLOSEST PERIPHERAL MARGIN (22.0.mm)
DEEP MARGIN: negative for invasive melanoma
Distance of Invasive Melanoma from Deep Margin: .2mm
Pathologic Stage Classification (pTNM, AJCC 8th Edition): Primary Tumor (pT): PT4b
Regional Lymph nodes: (pN): pN1c

Dr. Wang advised that from all these variables, I am at Stage IIIC. He recommended and I agreed to begin Pembrolizumab (Keytruda) within the next week. He described it as a one-hour IV infusion, once every three weeks. Doc will schedule a second PET/CT scan soon, waiting for my surgeries to heal further (My reconstruction is tomorrow). Doc also ordered the molecular study on tumor. I understand that treatment may evolve depending on how I respond. My follow up with Dr. Wang is in four weeks, about ten days after my initial infusion. Waiting now for the scheduler to contact me so I can lock in my first infusion date, and the ongoing schedule. Prayers for all who are on this journey.

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LH2000's picture
Replies 3
Last reply 10/7/2020 - 5:02pm
Replies by: chipgoodhue, LH2000, Bubbles

My wife is stage IV for last 22 months. NRAS mutation. Many therapies (6) have been tried with some mixed results, but some grade 2-3 Adverse Events and now some continued progression. Tried Ipi/Nivo, Nivo solo, Ipi solo, Trametinib solo, Olaparib solo, Binimetinib + Ribociclib. Time for a clinical trial. Had 2nd opinions at MSK, MDA and Moffitt. Going to work w/ Dr. Khushalani at Moffitt in Tampa. Debating whether to do TIL (Tumor Infiltrating Leucocyte, Adoptive Cell Therapy) vs. another type of targeted chemo (Ceritinib + Trametinib).

1. How successfully is TIL? We've heard at may be as low as 30% or as high as 50%.......
2. How hard is it to do the TIL therapy? How long in the hospital and how traumatic is it? Sounds pretty tough when they use heavy IL-2 etc to essentially get rid of the "old" immune system so that a "new" immune system to better fight the cancer is pumped back into you.
3. Any other advice or insights on options, especially for NRAS which doesn't seem to be able to be targeted directly?

Thanks!

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Socks's picture
Replies 6
Last reply 10/6/2020 - 2:30pm

I was originally diagnosed Stage IIIC nodular melanoma back in 2014. I was NED after surgical resection for almost 5 years and then it came back in February of 2019 - and it's on my liver now, which bumped me up to Stage IV (there's also an infected lymph node (we think) in my neck, but that's closer to the primary site, which was the back of my head). I made it through three cycles of Ipi/Nivo, did a short-term, high-dose course of radiation, and have been on Nivo alone since then. The last few CTs (and even an ultrasound!) showed the liver tumor shrinking. But a recent PET showed a lot of activity over a lot of area there. My oncologist thought it was inflammation and sent me over to talk to a liver surgeon about possibly getting the bad area just cut out. He (my onc) also scheduled me for an abdominal MRI as well as the brain MRI I usually get because, well, primary site was my head, so he wants to be careful.

There's no melanoma in my brain, but there's more on my scalp now (I knew about one bump, but the scan shows more than one). And there are now at least 10 spots of what looks to the radiologist like melanoma on my liver AND one on my spleen, so it looks like I won't be getting the liver surgery after all.

And all I can think at this point is... now what? Are we just out of options? Do I go back on Ipi & Nivo? Is this just the end?

For so long I only had the one spot on my neck and the one on my liver. And I got the news from the liver surgeon on Friday, right before he called my oncologist, so I've just spent the whole weekend basically sleeping as much as possible so I don't have to think about the fact that my treatment seems to have failed and that I may be dying a lot sooner than hoped.

"Be who you are and be that well." - Saint Frances de Sales

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tkoss's picture
Replies 5
Last reply 10/6/2020 - 11:54am
Replies by: Daisy2018, tkoss, MelMel

last tested with CT scans at 6 months o fimmo. NED. 3c.

i will end immo therapy in 3 months.

what test are necessary in years to come and how often?

For instance i had an MRI for brain at initial testing prior to immo but not a 6 months and it is not on the menu in the future.

so what test do i need and how often after immo and of course before any re-occurence?

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tkoss's picture
Replies 17
Last reply 10/6/2020 - 3:13am

ed, bubbles, others with tremendous knowledge and experience, i ask this question again. the last time i asked the responses were meager.

what is the issue of Immo and covid?
my docs can't or won't give me an answer. the web says little.

does taking Nivo make me more likely to die from Covid whilst doing infusions? After my last infusion, how long is my immune system supercharged so that i remain at high risk of death from Covid.

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