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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Anonymous's picture
Anonymous
Replies 4
Last reply 3/19/2020 - 1:51am
Replies by: MelMel, HeidiZ, AMcReader

Hey friends,

Peace to all of you currently fighting and those of you feeling anxious.

I’ve been NED and off treatment since March 2017. I had metastases to my spine, liver, and lungs. I’m wondering if I should go to work this week; I teach and students will not be there, but teachers are expected to go to school to teach online.

What are other NED folks doing? Although we are NED, are we at-risk because of the damage already done to our lungs?

I’ve reached out to my doctor at MD Anderson, but I’m sure they are busy and have more important questions to answer. I’d love to hear what others are doing.

Thanks.

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Affected's picture
Replies 6
Last reply 3/19/2020 - 2:07am

Hi Everyone., and To All Those That Have Responded to My Previous Texts,

Thank you from the bottom, top, and all possible sides of my heart and soul.

I haven't been on the board in a while, but I just wanted to let you all know that my husband had his first CT scan (head to toe) since his tumor removal in his parotid (salivary) gland last July, and the results showed no evidence of any spread!!!!! We are delighted. Really happy. I am so grateful for all your prayers and help and support and advice and for always being there for me. He is still on adjuvant immunotherapy of NIVO, but because of the Covid-19 virus spread here in Ireland and a very underfunded health system, his dose has been doubled in order for him to go to hospital only once a month instead of every two weeks. That is the norm in the US so we're OK with the change, as it will decrease the risk of him coming into contact with people that may be carrying coronavirus.

Again, thank you. Thank you. Thank you. May God listen to all my prayers and keep you safe and strong in this battle against melanoma.

With lots of love,
Affected

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Hello,
We live in Greece and my husband has been taking keytruda for almost two years, with success and no side effects. Due to covid19 spread in our country there are very strict restrictions about people moving inside the country. We live in an island and my husband has to travel to take his medicine. His next treatment is next week but his doctor was very sceptical about whether he should travel. The measures get stricter and stricter and nobody knows when will get back to normal. Is it ok if he misses one or two treatments, or more provided that the carantine time has ended? Thank you

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Tlynam's picture
Replies 13
Last reply 3/19/2020 - 11:30pm

Five years ago I had an excision and full thickness skin graft on my scalp, about five inches in diameter. The graft has never fully healed and blended in with the rest of the scalp. Instead it is prone to small skin tears, which causes some bleeding and a lot of very red spots. My dermatologist has tried several things, including a topical steroid lotion. I went to a wound treatment doctor for a while. I have tried several over the counter skin lotions. But none seem to work. I always have several very red spots and some blood spots as well. There is no hair to cover it. Needless to say, very frustrating. My melanoma is gone but the skin graft doesn’t want to heal. Has anyone had this problem and have any suggestions? Thanks.

Tlynam

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The following article maybe of interest in light of the current Covid-19 crisis.

https://www.nature.com/articles/s41591-020-0819-2

"We report the kinetics of immune responses in relation to clinical and virological features of a patient with mild-to-moderate coronavirus disease 2019 (COVID-19) that required hospitalization. Increased antibody-secreting cells (ASCs), follicular helper T cells (TFH cells), activated CD4+ T cells and CD8+ T cells and immunoglobulin M (IgM) and IgG antibodies that bound the COVID-19-causing coronavirus SARS-CoV-2 were detected in blood before symptomatic recovery. These immunological changes persisted for at least 7 d following full resolution of symptoms.

Collectively, our study provides novel contributions to the understanding of the breadth and kinetics of immune responses during a non-severe case of COVID-19. This patient did not experience complications of respiratory failure or acute respiratory distress syndrome, did not require supplemental oxygenation, and was discharged within a week of hospitalization, consistent with non-severe but symptomatic disease. We have provided evidence on the recruitment of immune cell populations (ASCs, TFH cells and activated CD4+ and CD8+ T cells), together with IgM and IgG SARS-CoV-2-binding antibodies, in the patient’s blood before the resolution of symptoms. We propose that these immune parameters should be characterized in larger cohorts of people with COVID-19 with different disease severities to determine whether they could be used to predict disease outcome and evaluate new interventions that might minimize severity and/or to inform protective vaccine candidates. Furthermore, our study indicates that robust multi-factorial immune responses can be elicited to the newly emerged virus SARS-CoV-2 and, similar to the avian H7N9 disease8, early adaptive immune responses might correlate with better clinical outcomes."

I am hoping we start reducing that curve real soon.

Melanie

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Shelby - MRF's picture
Replies 1
Last reply 3/20/2020 - 6:33pm
Replies by: Nadia1

Dear MPIP Community:

I wanted to share the MRF's COVID-19 Update that was emailed earlier today. The MRF is committed to ensuring that all of our community is informed and supported during and after this unprecedented time. Please take a moment to read through the various steps the MRF is taking to implement social distancing, as well as ways for you to remain involved with our mission of research, education and advocacy.  

If there is anything you need from the MRF, please know that we are here for you. We are currently exploring ways to modify our postponed in-person educational activities, so if there are questions you need answered or topics you are finding difficult to navigate, please email me directly at education@melanoma.org so we can help find solutions. We are continually monitoring the situation at several major academic medical centers and are in touch with melanoma treatment teams across the nation so we may provide you with pertinent information in a timely manner. Please don't hesitate to reach out if you have questions.

All the best,

Shelby - MRF

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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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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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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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tkoss's picture
Replies 1
Last reply 3/21/2020 - 4:35am
Replies by: MelMel
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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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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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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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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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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