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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marta010's picture
Replies 2
Last reply 3/28/2020 - 9:58am
Replies by: gopher38, Bubbles

My husband Larry, had his 6th gamma knife on Tuesday.....boy, are brain mets persistent. We're very thankful that he wasn't exhibiting any Neuro symptoms and that his team was able to get him in for treatment quickly. This met was new but near an area where he's had two prior gamma treatments and two brain surgeries. Hope this is the last time we need to deal with this area. This was not the way we wanted to celebrate his 8 year "anniversary" but what can you do! Stay safe and our of harms way!
Ann

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ScaredPartner's picture
Replies 5
Last reply 3/27/2020 - 10:32pm

Partner started a new phase 2B trial today. TGF Beta, combined with a PD1.
The required 3 week washout period was really hard on him. The targeted drugs had started failing hence the change to the trial, but once he completely stopped taking them the subcutaneous lesions grew fast. 3 weeks ago he was riding his bike for miles through Hawaii, and yesterday couldn’t make it from cab into hospital without assistance because of the pain.
After the pain was under control they went ahead with treatment one.
In hospital over night for monitoring as this drug is hard on the heart.
We are hoping for a miracle/miraculous science.
The idea behind this trial was that it was meant for people who for some reason had some progression within the first 12 weeks on immunotherapy, and to find a solution for that group of patients.
I post this in case anyone else is currently looking into this trial, and have questions about our journey to get there, or if someone has been through it in phase 1, and has any insight on the treatment. No results are posted anywhere yet. It just got approved for 2A (in Canada anyways) about 2 weeks ago
I hope my rattie is the on the way to a cure.
Best to all.

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gkersey's picture
Replies 2
Last reply 3/27/2020 - 8:30am
Replies by: Edwin, BillB

Hi. My name is Gail. I am a 55-year-old female. I was diagnosed with melanoma in 2017. The surgery was successful with no treatments. I have just been diagnosed with it again. I need to know what can I eat or drink before my PET Scan? I am hypoglycemic and need to make sure I keep my sugar up the day of the scan. Thank you for anyone who is willing to reply.

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Dear MPIP Community:

I wanted to let you know of an upcoming webinar with two amazing melanoma experts coming up next Tuesday, March 31 at 10am ET. This will be a live webinar with time for Q&A. If you can't make it, don't worry...we'll post the webinar on our website shortly afterwards, and you can submit questions to me at education@melanoma.org and our speakers will try to address them! 

Best,

Shelby - MRF

 

 

 

 

 

 

 

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Redstar.20's picture
Replies 6
Last reply 3/26/2020 - 12:54pm
Replies by: gopher38, MelMel, msue5, tkoss

I had my first treatment yesterday of Opdivo, mostly doing ok. Have been extremely tired and body aches like I have worked really hard. I also have noticed that I have tingling and numbness mostly in my right arm and gand tonight. Is this something that will pass in a few days? Or is it something that will continue throughout trearment?
Thank you!
Kate

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BrianP's picture
Replies 1
Last reply 3/25/2020 - 4:45pm
Replies by: ed williams

Not sure if this is old news or not. Looked back a little and didn't see anything on his MSK study.

https://www.cancertherapyadvisor.com/home/cancer-topics/skin-cancer/mela...

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sj's picture
Replies 1
Last reply 3/25/2020 - 12:32pm
Replies by: jennifer83

I had my WLE on January 17th and they patched me up on January 31st (scalp reconstruction and rotation, 55 staples). The wound opened up when the staples were removed and I have posted about it on here before.

About 3 weeks ago my scalp kinda hit a plateau. It just wasn't healing anymore, or had slowed considerably. A week went by and the wound really had not changed at all and was still leaking and bleeding.

Around 9 days ago I started lifting weights again, properly with no restrictions. And since then it's like the healing went really quickly. I went from a hole in my head to almost closed and the skin that has formed has feeling and sensation too. I expect it to be fully closed in the coming days.

I also found a paper from 2008 by the NIH that states exercise accelerates cutaneous wound healing in mice, so it may not be my imagination at all. https://www.ncbi.nlm.nih.gov/pubmed/18003791

Hopefully this helps someone.

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caman's picture
Replies 5
Last reply 3/25/2020 - 10:32am
Replies by: caman, Bubbles, tkoss

Hi everyone, recently had my scan done which indicated a inflamed nobe on my neck, .8mm. The nobe was .6mm previous scan. Just visited with my doctor with the follow up and it felt palpable. He said it feels like tumor and needle biopsy is necessary. So now I need to wait a few days for the results. Just wondering how does he know almost for sure its a tumor by just feeling it. Very nervous right now just wondering anyone out there that had the same experience with the doctor. Also, I did have carotid surgery on the same side of my neck 2 years ago, almost same time I had my WLE done. The bump he felt today is right on the end of that scar caused by the carotid surgery where the sutures were made. Whats the chances the lymp node he thinks its now cancerous is exactly on that spot. That gives me a little comfort its not cancerous. But he tends to feel its probably stage 3 for me. Looking for some honesty and hopefully some comfort from anyone out there. Thank you everyone!!

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MelMel's picture
Replies 1
Last reply 3/23/2020 - 1:04pm
Replies by: MelMel

The following study looks at a newly developed test called Cauchy-Schwarz index of Neoantigens (CSiN) score which predicts more accurately which patients will respond better to immunothetapy than other current tests. Here is the link and short description including the abstract.

https://immunology.sciencemag.org/content/5/44/eaaz3199

Neoantigen Number Crunching
Immunotherapy with anti–PD-1 and other checkpoint inhibitors is an important cancer treatment modality, but improved biomarkers are needed to better predict which patients will respond. Current computational approaches that assess tumor immunogenicity by deep sequencing of tumor samples to count mutations and predict neoantigen epitopes are unable to factor in clonal variation within tumors. Lu et al. developed an algorithm to calculate CSiN score, a metric that also integrates the distribution of mutations among tumor clones. Testing of CSiN score against other indices of tumor neoantigen burden revealed improved correlations with outcome and prognosis in cohorts of patients with tumor types known to be immunogenic. Calculation of CSiN scores from tumor genomics data may assist in selection of patients most likely to benefit from cancer immunotherapy.

Abstract
Lack of responsiveness to checkpoint inhibitors is a central problem in the modern era of cancer immunotherapy. Tumor neoantigens are critical targets of the host antitumor immune response, and their presence correlates with the efficacy of immunotherapy treatment. Many studies involving assessment of tumor neoantigens principally focus on total neoantigen load, which simplistically treats all neoantigens equally. Neoantigen load has been linked with treatment response and prognosis in some studies but not others. We developed a Cauchy-Schwarz index of Neoantigens (CSiN) score to better account for the degree of concentration of immunogenic neoantigens in truncal mutations. Unlike total neoantigen load determinations, CSiN incorporates the effect of both clonality and MHC binding affinity of neoantigens when characterizing tumor neoantigen profiles. By analyzing the clinical responses in 501 treated patients with cancer (with most receiving checkpoint inhibitors) and the overall survival of 1978 patients with cancer at baseline, we showed that CSiN scores predict treatment response to checkpoint inhibitors and prognosis in patients with melanoma, lung cancer, and kidney cancer. CSiN score substantially outperformed prior genetics-based prediction methods of responsiveness and fills an important gap in research involving assessment of tumor neoantigen burden.

Happy reading.

Melanie

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Here is a study which looks at predicting who will respond best to immunotherapy

https://immunology.sciencemag.org/content/5/44/eaaz3199

Neoantigen Number Crunching
Immunotherapy with anti–PD-1 and other checkpoint inhibitors is an important cancer treatment modality, but improved biomarkers are needed to better predict which patients will respond. Current computational approaches that assess tumor immunogenicity by deep sequencing of tumor samples to count mutations and predict neoantigen epitopes are unable to factor in clonal variation within tumors. Lu et al. developed an algorithm to calculate CSiN score, a metric that also integrates the distribution of mutations among tumor clones. Testing of CSiN score against other indices of tumor neoantigen burden revealed improved correlations with outcome and prognosis in cohorts of patients with tumor types known to be immunogenic. Calculation of CSiN scores from tumor genomics data may assist in selection of patients most
likely to benefit from cancer immunotherapy.
Abstract
Lack of responsiveness to checkpoint inhibitors is a central problem in the modern era of cancer immunotherapy. Tumor neoantigens are critical targets of the host antitumor immune response, and their presence correlates with the efficacy of immunotherapy treatment. Many studies involving assessment of tumor neoantigens principally focus on total neoantigen load, which simplistically treats all neoantigens equally. Neoantigen load has been linked with treatment response and prognosis in some studies but not others. We developed a Cauchy-Schwarz index of Neoantigens (CSiN) score to better account for the degree of concentration of immunogenic neoantigens in truncal mutations. Unlike total neoantigen load determinations, CSiN incorporates the effect of both clonality and MHC binding affinity of neoantigens when characterizing tumor neoantigen profiles. By analyzing the clinical responses in 501 treated patients with cancer (with most receiving checkpoint inhibitors) and the overall survival of 1978 patients with cancer at baseline, we showed that CSiN scores predict treatment response to checkpoint inhibitors and prognosis in patients with melanoma, lung cancer, and kidney cancer. CSiN score substantially outperformed prior genetics-based prediction methods of responsiveness and fills an important gap in research involving assessment of tumor neoantigen burden.

Happy reading.
Melanie

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AMcReader's picture
Replies 12
Last reply 3/22/2020 - 11:44pm

Hello friends,

I always like to take a moment to reflect on the monumental-ness of today, March 1.

On this day, 2 years ago, I moved swiftly from being a Stage 1 Melanoma patient for 24 years straight into stage 4 with a very, very large brain met and a lung met (or maybe 2). I was 16 days postpartum with my first (and I was soon to learn only) child and in that new-mom haze of no sleep, wild hormones and adjusting to this “brand new life” of mine when my very concerned husband took me to the ER for the second time after my brother reminded him that my dad had exhibited similar symptoms when he was diagnosed with stage 4 melanoma 2 years earlier.

One quick MRI was done and then a teary-eyed, new-dad ER doctor held both mine and my husband’s hands and gave us what seemed like the worst possible news...huge brain met, needs to be removed immediately, Stage 4. I had lived almost my whole life with Melanoma and watched my dad pass away from it in less than 2 months only 2 years earlier. We were heartbroken in a way that you can only be when you have a brand new life at home and you have a very, very real fear that you are almost immediately going to be torn from it.

However, somewhere over the course of the next few days several doctors, nurses, social workers and other kind people would hold our hands and help us to understand that this did not necessarily mean the end is imminent. There were options and they were going to work with us to find the best ones. It has been an adventure with lots of ups, downs and in-betweens, but two years later I’m still here, I’m still thriving and, by the grace of all good things, I’ve gotten to that sweet, sweet spot of NED.

Every day when I get two squeeze my wiggly little two-year old daughter, I’m still beyond grateful that I get to be here for every kiss, milestone and memory. It is not the journey I would have chosen, but somehow the very bitter has made the journey even sweeter.

Wishing all of you health and happiness!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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tkoss's picture
Replies 1
Last reply 3/21/2020 - 4:35am
Replies by: MelMel
tkoss's picture
Replies 2
Last reply 3/21/2020 - 3:59am
Replies by: Tsvetochka, Nadia1

a heads up: Derm made a really big deal that i should not take aspirin prior to office excision of a mole. he even went as far as to push excision back a week until i had time to clear aspirin. He was perfectly fine with me taking Tylenol as substitute.

I emphasize he made a really big deal about the aspirin because i had a WLE and SLNB in hospital and excision in derms office and basically was instructed to knock off aspirin the day before. Now Derm is saying it is essential to knock off aspirin weeks before.

SO HERE'S IS THE PROBLEM;

switching to Tylenol(acetaminophen) raised liver enzymes and my infusions are canceled until enzymes come down. whoah!

i had the saline drip going and they were ready to mix nivo when PA called it off. To say that PA came in and demonstrably told me in no uncertain terms tylenol caused enzymes to drop and so infusions had to stop would not be correct. i basically had to pick thru his comments to get at the root of the matter. Tylenol may or may not have raised enzymes, and cessation may or may not send levels back to normal and i may or may not resume infusions.

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geriakt's picture
Replies 9
Last reply 3/21/2020 - 3:55am

I was diagnosed 3B melanoma ad had 36 Opdivo treatments in a 50 week time frame all at elevated dose per a Clinical Trial. It has been 3 years since my last infusion, but have continued to get CT scans with contrast. Over time my Creatinine levels have increased to 1.6 which is stage 3 kidney failure.
Has anyone else developed diminished kidney function after treatment of Opdivo and or CT dcan dye? Is so what type of treatment was prescribed?
Tom

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Hello all,

I have a quick question. I had a CT scan for my kidneys because I was having back pain and my doctor (urologist) thinks it is an obstruction. Kidney is most likely ok, however the scan showed 2 small and one medium sub centimeter hypodensities in my liver. I had stage 1 on my foot in 12/15 removed and NED ever since. Should I be worried about these spots ? Any recommendations? Can it metastasis to the liver without being in the lymph nodes? Of course I will be sending results of scan to my oncologist, next week. But just a little concerned my urologist thought it was no big deal and I should have another scan in 6 months.

Thanks

Cynthia Rush

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