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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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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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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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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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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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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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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Replies by: studiodad

it has characteristics of becoming in situ melanomic.

my question: isn't that what the nivo is supposed to treat?

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Beany's picture
Replies 2
Last reply 3/15/2020 - 10:09pm
Replies by: Beany, Bubbles

Hello all,

I posted progress of my first and second combo treatments. My doctor prescribed prednisone 5mg per day starting from the first infusion. He only gives me enough for four days then does a blood test.
Anyway, my question is is it strange to prescribe prednisone before side effects occur?

Thanks to Ed and Edwin for the heads up.

Sincerely,

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eouellet's picture
Replies 6
Last reply 3/15/2020 - 7:22pm
Replies by: Bubbles, eouellet

Hello Everyone,

I am taking Dab/Tram for Adjuvant therapy (recurrent melanoma in 2 left axillary lymph nodes (January 2020), after the removal of melanoma on my left back with negative margins and negative sentinel node biopsy in Nov 2018)

I am experiencing a grade 3/4 side effect: low White Blood Cells and Low Neutrophils (which occurred after 10 days of the first dosing). After stopping the medication for 5 days, they (WBCs and Neutrophils) returned to normal quickly. After restarting a second time, the same happened after 8 days but not as severe. I stayed on the medication for an additional 4 days with the same lab results, but no further decrease in my counts. THEN...the infamous fever, chills, aches presented that evening and next day. My Oncologist advised me to stop the medications again (perfectly makes sense). I am going to see him Monday (3/16/2020) to discuss. In a brief discussion Friday on the phone he mentioned discussing immunotherapy.

I have the BRAF + mutation melanoma for which BRAF and MEK-1 inhibitors are indicated for treatment. I also understand these medication are newly FDA approved and Neutropenia (low WBCs + Neutrophils) only occurred in 11% of the patients who participated in the trials of this combination treatment. I cannot find any information regarding the attempts to manage this side effect.

Has anyone experienced this side effect (low WBCs and Neutrophils? How did your oncologist help you manage it? I really want to try dose adjustment (as done with fever, chills, aches)...or if this is chronic, try taking filgrastim (Neulasta) to enhance WBC production? I feel like because there is limited information about the long-term management of the side effect I am experiencing, I want to give it a little longer and see if this side effect might subside as described with other side effects (fever, chills, aches.) I have no other serious side effects related to organ toxicity; heart, lung, liver, kidneys, bleeding, skin.

Any information would be helpful.
Thank you,
Edie

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DT1985's picture
Replies 3
Last reply 3/15/2020 - 1:17pm
Replies by: TimCT, DT1985, Bubbles

I am 3A and was just recently told that I was barely 3A. However I was originally told I barely had Melanoma or that there was barely a chance of it being in my lymph nodes, but surprise surprise it is..so I keep coming down on the wrong side the odds..

With that said, I have been having a dull headache almost everyday for the last few weeks. Maybe a day or two in there without one. Generally it goes away with Advil or Tylenol. No other symptoms. Headache can range from the back of my head/neck to the top of my head. I am hydrated no more or less than usual. I am eating. Have a good pillow. Is this stress?

I go for my MRI on Tuesday and I can’t help but worry that it’s gonna light up like a Christmas tree.

Should I be this concerned?

For anyone that has had brain mets, what were you symptoms if any?

Thank you for your time.

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Redstar.20's picture
Replies 14
Last reply 3/15/2020 - 12:44pm
Replies by: ed williams, Bubbles, tkoss

Hello! I am looking for support from those who have experience with all of this. 3 years ago I was diagnosed and 2 months ago it came back. I find that my doctors use vague words, and do not want to paint a very clear picture of where I am and what the future may look like. I, of course, have been doing my own research on the internet and I have found a lot of information on it. My doctor wants to be upbeat regarding the course of treatment and doesn't want to focus on possible side effects until they are a problem.
Course of treatment is 1yr of Opdivo every 28 days. I have read about this drug, and I have read it only works on 50% of the melanoma patients. I have read extensively on the side effects of this drug, and there are a few of them that I already suffer from, like frequent diarrhea, frequent mouth sores, upset tummy. Has anyone suffered from these ailments prior to treatment of Opdivo and not had them worsen during treatment? How long after infusion do the side effects start, if there are any? Has anyone had the same stage and recurrence as me, and had Opdivo, only to have another recurrence after treatment?
I know everyone's experience is different but I sure could use more information from those that are going through this, or have been through this.
Thank you!

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Bubbles's picture
Replies 4
Last reply 3/14/2020 - 11:10pm

My dear MPIP Peeps,

While the world reels from the human and monetary impacts of COVID-19, often with more questions than answers, there is still hope! We are here. Together. The reality is viruses, like cancer, don't care how much money you have, the color of your skin, the state or country you live in. They don't look at maps and lines drawn in the sand. They don't care who you vote for - or against. They don't care if you are young or old. We melanoma patients know this!!! However, the data for this particular virus tells us that the older and immune-compromised among us are at greater risk for significant illness. Hoarding all the toilet paper and hand sanitizer for yourself (Soap and basic hand washing is much more effective in ridding your hands of germs - FYI!!!!) will not protect you from those who didn't have the funds or opportunity to attain some for themselves. Conversely, keeping yourself healthy - while helping others to do the same - can protect our health, our way of life, and yes - even the world economy.

Yes, there is much concern about risk. If you are elderly, have a lung condition or heart disease of any sort, a spleen that doesn’t work properly, AIDS/HIV, recent CHEMOTHERAPY, radiation, or surgery, take medications that can cause a DECREASED immune response like prednisone or biologics like infliximab or humera (both of which may be used for folks on immunotherapy who are having significant side effects), or have an inborn or acquired disease process that decreases your immune response – then you are at increased risk. Immunotherapy in and of itself, does NOT increase your risk. Still, no matter where you fall in the risk category, you are not without options or hope. Sensible precautions (avoiding crowds, those who are ill, good handwashing) and reaching out to your doctor quickly should you experience any fever, cough, or shortness of breath when carrying out activities that do not usually cause you difficulty are within our control!

So is how we choose to live!!! Hands need more than sanitizer. I choose to use mine for good!! What I choose to do today to protect and help myself – or not – is so much more than just that!! What I do, or do not do, impacts not only my life, but those around me – strangers, friends, and family alike. Similarly, the actions you engage in – impacts not only those who love you – but my life and the lives of others you may have sat next to on a bus or never met at all. We are all venn diagrams. We are enclosed in circles that not only embrace us, but remain inextricably linked to the circles of others.

Panic never helps. It is a supreme energy suck and a huge waste of time whether inspired by melanoma or COVID-19. And while remaining calm is easy for me to advise, it is often harder to attain. However, I’d like to think here – in our special place on the interweb of life – we melanoma peeps are better prepared than most. We LIVE with risk! We eat it for breakfast and put it to bed with us at night!! It isn’t always a piece of cake, but we do it! Further, living as we do, we have learned what is really important – and likewise what is not. We are used to making dear friends here. In a place where we can share and love and cry WITH one another, though most of us have never met!!! So yes, for now, a lot of what was up is down. My daughter is to start teaching online rather than in the classroom on Monday. The bus drivers will no longer be taking children to school, but will instead be taking lunch to the students. That’s genius!! See??? We CAN do this! Using our hands for good helps others and gives us something to do - rather than panic.

So yes, our hands need more than sanitizer. They need to be busy with goodness. There will be many in need. And we can all help. Tutor a kid online. If a neighbor is laid off or in need – ad a little something extra to your grocery cart or amazon delivery order and drop it off on their porch. Make a monetary donation to your local food bank. Call a high risk or infected person who is stuck at home or in a home for the elderly that no longer allows visitors. Yep. Really pick up the phone and call – using your voice. It’s a thing. It will lift their spirits – yours too! I’m sure each of you can come up with ever so many other things.

Be well. Do good. Love and hugs. Les

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Beany's picture
Replies 2
Last reply 3/14/2020 - 6:15pm
Replies by: Beany, jbronicki

Hello everyone,
Just finished my second combo infusion. No side effects yet except for a rash on my chest.
My LDHevels came down as below
Date. LDH
2/21 334
3/13 225

The onc didn't say anything about the decrease. He said the LDH is a little high.
Any thoughts or input would be kindly appreciated.

Sincere regards,
Beany,

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sj's picture
Replies 7
Last reply 3/14/2020 - 7:19am
Replies by: tkoss, JudiAU, Anonymous, ed williams

Hi folks,

Cancer is an underlying condition, especially if you're receiving chemo/radiation/immunotherapy.

Do any of you know if you're still at risk if you haven't required any of those treatments? I had surgery which removed the cancer (stage 2B), and I'm wondering if I would be considered as having an underlying condition -- I don't think so, but I'm not too knowledgable regarding this and my oncologist is on vacation until next week so I figured it wouldn't hurt to ask here.

The above treatments can impact your white cell counts, which I'm guessing is why people are at risk there.

I had 4 surgeries in quick succession, and a ton of antibiotics so I should be careful regardless, but just wondering.

Thanks,
sj.

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Here is link to Dr. Omid Hamid posted article by radiologist at Mount Sinai hospital on how radiologist can use ct -scan images to know if patient has covid-19 virus. I will also post original video on Bloomberg from Feb 27 that features Dr. Adam Bernheim cariothoracic radiologist, funny no other big news organization have run this information for the last two weeks. https://www.youtube.com/watch?v=xUuNr_EFlBM https://www.youtube.com/watch?v=xUuNr_EFlBM

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