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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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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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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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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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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Sdmotorcop describes going from 3c to 4 after 10 months of premb, and bubble's posts studies of recurrence and SR's for targeted and immo drugs.

my question is, especially as I move into Medicare in 1 year, will the insurance companies or Medicare pay for indefinite treatment? technically , reading the fine print they weren't necessarily obligated to treat me this past year.

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Sdmotorcop's picture
Replies 1
Last reply 10/5/2020 - 10:09am
Replies by: Daisy2018

I went to stage 4 after being on opdivo for almost 10 months (originally 3C). Doc had me forgo the last two doses of Nivo and started me on Ipi in June. I made it through 3 doses of ipi and then my liver numbers shot up. I was put on 80 mg of prednisone at the end of July and have been tapering (now at 15mg). I started noticing more muscle and bone aches towards the middle of September. My bi monthly blood test (sept) was nothing major. My white cells were a bit high along with my neutrophils. Lymphocytes were a bit low.. nothing to write home about.

I had an appointment with my oncologist and told him about my little aches and pains. He did a blood test that showed my white cell count has increased along with neutrophils. My lymphocytes are also lower. What I found interesting was a note that accompanied my results. The note read “ increased immature granulocytes (IG) define a left shift”. My oncologist said my bone marrow is sending immature cells...

I am curious if anyone has run into this left shift after being on Nivo/Ipi..

Bruce

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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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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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Daisy2018's picture
Replies 6
Last reply 10/3/2020 - 3:34pm
Replies by: Daisy2018, Bubbles, JudiAU

I had my lymphedectomy done in my groin a month ago. I had my surgeon appointment today. I knew he would still keep the drain. It drains quite a bit. He will keep it for next two weeks.
I feel I m covered in crust all over my body. Gross.. I haven’t taken a shower for a whole month. My dog is looking at me from her side of the couch with a question in her eyes when we will finally go for a nice walk. The surgeon said it’s a nasty surgery with long healing time. Grrr!

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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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THMoore's picture
Replies 8
Last reply 10/3/2020 - 10:08am
Replies by: THMoore, sing123, Anonymous, Daisy2018, sks2019, Johnjk04

Hope this combo works. Took my second infusion yesterday. So far, I have a rash, cluster headaches and now they told me my thyroid is dying. The oncologist said only chemo is next with more immunotherapy or clinical trials. My scans will be in mid to late November. Just providing a status update. Love all of warriors

Trent

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sks2019's picture
Replies 9
Last reply 10/2/2020 - 11:59am

looking at my mom's struggles and her fight with the disease , I am terrified to think everyday that i might get it too. I am 39 yrs ols with two boys 7 and 10. This thought haunts me everyday and has changed the way I look at life and live it. I am not interested in anything anymore and dont find joy in my profressional life or personal life thinking what its worth at the end.

Has anyone seen melanoma to be geneticaly passed or more specially mucosal melanoma to be genetic ? Mom could only get 2 years after daignosis. She is in ICU for last 16 days and doctors are telling me to stop all treatments for her and focus on getting her comfortable. My heart breaks and bleeds every moment to see her like this. Such a horrible disease.

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mrbill16323's picture
Replies 2
Last reply 9/30/2020 - 4:03pm
Replies by: mrbill16323, Bubbles

Last week Sept 24, 2020, I just had WLE on the crown of my head, aggressive growth malignant melanoma. Also SLNB. Still waiting for the margins and biopsies results, but my reconstruction is scheduled for this week Friday Oct 2nd. My WLE surgeon scheduled for me my first oncology appointment with Dr. Ding Wang with Henry Ford Hospital Michigan. tomorrow October 1. I love to hear any advice from folks to help me frame up my expectations from this first appointment, and important questions you'd suggest I ask. I'm reviewing ht Mayo Clinic site today to also learn what I can. My expectation is that the results will be available for this appointment, because if not I cannot proceed with the reconstruction scheduled for Friday Oct 2. So today I'll work on my questions list, and organizing my flies (I fly fish) with the intention to be in the water next spring. Positive thoughts to all.

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Fortysomething's picture
Replies 4
Last reply 10/1/2020 - 8:40am

Hi forum,
Finally had sentinel biopsy done, removed one lymph from left axillary. Feel a bit sore but not to bad.Have to wait four weeks for my results ,really do have fingers crossed that it comes back negative.The only thing that worries me was it was extensively ulcerated,.but my wle was all clear. Maybe that’s a good sign.

Regards

Andrew

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Daisy2018's picture
Replies 6
Last reply 9/30/2020 - 9:51pm

Hello my fellow melanoma fighters and families.
I was thinking lately about future. One of the pressing things on my list is my car. My 16 years old Toyota Sienna is getting too old to the point of being unsafe. I m becoming a regular at the car shop every week for a last month throwing more and more in it. Reading car reviews. People are praising cars for looking forward driving them for next 10 years.
I ask myself. Do I have another 10 years? Would I be able to work? Should I just get some reliable little car I would be able to drive to my treatments? Should I get the car I always dreamed of since I may not get to my retirement age where people get the car they always wanted. I have some retirement money saved up for a rainy day. Is it a day to use it? At least I can enjoy my ride to the cancer treatment place.
There are so many uncertainties. I am a planner. I have no control over what is going to happen no matter how much will power I will put in it. I m stage 3c now. Still recovering from lymph nodes removal and it’s slow and doesn’t look like I can have the drain out after a whole month of having it in. The incision looks weird everyday. In the morning it looks good. In the evening it looks all red. Seeing surgeon in 2 days.
I m greatfull to be able to work from my couch and had I had to work on my feet or even from the office I would have had to take FMLA last month. Looking forward of getting Keytruda for next year. How would it work out, side effects? Getting anxious and uncertain.
I always thought I can take care of myself no matter what as long as I m healthy. It looks I have to live day by day. I wish a had crystal ball to know what is the plan.

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