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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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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Replies by: ed williams

I will give you a couple of links, first one to Dr. Omid Hamid twitter account if you are interested or for those who are older and have underlying health issues. He has posted a couple of interesting facts, one on Ct scans and how Covid -19 images are unique reported by MT. Sinai doctor and a second post from Italy. Dr. Paolo A Ascierto an Oncologist and is helping to treat Covid -19 patients with severe lung issues that are on respirators. They have used a CAR-T drug for cytokine storm reactions called 'Tocilizumab' successfully on 3 out of 6 patients that were on respirators and they are expanding the number of patients that they are attempting to save with the use of Tocilizumab. I thought it might be important for this information to be shared with the forum as the #'s of cases of Covid-19 keep going up in the US and Canada and sharing possible treatment options for those with lung issue might become important in the near future. https://twitter.com/OmidHamidMD https://twitter.com/PAscierto

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tkoss's picture
Replies 1
Last reply 3/13/2020 - 9:44am
Replies by: ed williams

how do I edit my posted comments?

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tkoss's picture
Replies 2
Last reply 3/13/2020 - 8:29am
Replies by: tkoss

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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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Lynn53's picture
Replies 8
Last reply 3/12/2020 - 6:46pm
Replies by: tkoss, Lynn53, jbronicki, Anonymous

Hi All,

I am new to this forum, and so thankful I found it! In 2018 I had a mole removed off of my calve. After biopsy, and further testing, I was told by my oncologist I was stage IIIb. It was in my calve and had traveled to my sentinel lymph node in my groin. I had surgery that removed over 1/2 of my calve, and my lymph node. I had started infusions of Keytruda prior to surgery, and continued treatments every 3 weeks for 12 months. I had some complications such as an infection where the lymph node was removed, which landed me in the hospital with sepsis, and another surgery to "clean" out area and put drains in for awhile. However, I weathered that and was fine, eventually. Also, contracted shingles due to my immune system being lowered by Keytruda.
I was so excited to complete my last treatment after 12 months of infusions, and was scheduled for another scan. Unfortunately, scan showed another swollen lymph node in my groin area again. Tissue testing confirmed it was malignant melanoma. My oncologist then started me on Opdivo & Yervoy together. Two weeks after my infusion of the combo, I was admitted to the hospital. I had GI issues, (Colitis) and test confirmed my immune system was attacking itself. I was mentally and physically exhausted. My pain level and weakness was something I had never experienced to that degree before. After going thru several tests / procedures to confirm this, I was then given a treatment of Remicade. I was in the hospital for a total of 22 days. Part of the time I was in critical care. Afterward, I had one additional infusion of the Remicade at the cancer center and I must say that drug is a Godsend!!

4 weeks later, I went back into surgery, had 15 lymph nodes removed from my groin area, and 4 more were malignant. My oncologist told me I can no longer have any types of immuotherapy drugs due to my immune system. The fear being next time they could not stop it again if things went wrong. So, my last brain & CT scan were clear for the first time in two years, Thank God! I go every 3 months, and my next brain and CT scan are at the end of this month. I'm trying most of the time not to live my life in fear, and trust God, no matter what happens. But, I will admit I'm a littler anxious about the scan and if something comes back I'm not sure what my treatment options are out there...... that's my question. Being that I'm now 3C, what are my treatments options out there? I know they are saying that Interferon is really not as good as the immunotherapy drugs. I know my oncologist said we will cut it out surgically wherever we can, but I would feel better knowing there could also be a treatment to increase my chances of remission. I'm not sure about chemotherapy. I think I read their might be one out there? Has anyone had it, and did it work?

I'm feeling great, done wiith my physical therapy, and exercising on my own now. And finally feeling like my old self again.......

Thank you for your time, and any feedback would be greatly appreciated.

Best Regards,
Lynn

Lynn Yeager

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Dear MPIP Community:

As patients and their loved ones are those most affected by research advances and the development of new therapies, the MRF believes their input to be incredibly valuable to the grant review process. Beginning in 2019, melanoma patient advocates were invited to participate in the grant review process to share their perspective on which areas of research should receive grant funding. This program is expanding in 2020, and the MRF is currently seeking melanoma patient advocates to join a research grant review panel.

Formal scientific training is not required, but those with such a background are welcome to apply as well. Information on how to apply, eligibility criteria, estimated time commitment and more are available in the MRF Research Center. Completed applications are due by Thursday, April 16, 2020.

If you are interested, we encourage you to apply.  Please feel free to contact Robyn Burns, PhD at rburns@melanoma.org with any questions/concerns. 

Best,

Shelby - MRF

 

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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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DT1985's picture
Replies 13
Last reply 3/11/2020 - 8:43am

Hey folks, I’m back again. Quick recap...
Nodular Mel back of calf 1.5mm deep, no ulceration
WLE - clear
SLNB - not clear, involved less than 1mm (only took one node from groin)

Making me now IIIa. (Until I do the PET/MRI scans to see if it’s elsewhere)

The crappy part about my story was I received a phone call from the VA the other day stating that everything was clean. Only to go to my surgery follow up today and be told “actually there was cancer on the SLNB”. So I have already have had quite the up and down ride with this.

Questions...

I am on Long Island in NY and looking to take my case to the best. I have received names like Dr. Weber at NYU, Dr. Postow at MSK, Dr. Kudelka at Stony Brook. Of course I’ve heard many other names from friends/family and what you folks have said, but how do I decide? I live in Stony Brook so that’s convenient for the one but the doc isnt renowned like Weber or Postow. I’ve seen other names on this forum for docs at MSK in Manhattan as well, Chapman? I don’t know who to choose, but I do know the VA is not where I want to fight this. I would like a doctor who won’t treat me like he’s doing me a favor by seeing me that day. And someone who has a team that will stay on top of things and not say “oh sorry, we forgot to tell you blah blah blah” or get my pathology report wrong.

Also...

How do I get my BRAF checked?

Should I get my LDH checked?

Guessing PET scan is next step and MRI. Will they want to take more lymph nodes regardless or only if PET shows something? I’ve read that a dissection is no longer considered worth the risk of lymphedema. And how bad is lymphedema? I fly a lot for work, would that complicate me going back to work?

I’ve seen immunotherapys of Opdivo, Keytruda, and IPI, but also Nivo, Pembro, and Yervoy. Is that just brand names of the same drugs? Does one work better than the other? Most common draw backs to those?

What if it was just the one lymph node that is involved. Is immunotherapy still needed?

And now that I am IIIa, is it almost a certainty that I will have a reoccurrence somewhere else in my body at some point? (granted it hasn’t already metastasized) It seems some of you folks have almost gotten used to the fact that this crap doesn’t go away ever.

Again as always, I am very grateful to all of you and your willingness to share your experiences. I hope one day I can be the book of knowledge for someone that started in my position. Actually I hope no one ever has to experience this....cancer sucks

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jennifer83's picture
Replies 12
Last reply 3/10/2020 - 11:35am

Hello all,

Just an update. Quick history - stage 4 with lung/liver mets. Four rounds of ipi/nivo and all tumors are shrinking! Started double dose of opdivo 2/21. Very soon after, my vision started to blur. Last week, my vision started to double and got progressively worse. Tuesday, I drove to work but there was no possible way to drive home. Went to ER at MD Anderson Wednesday where I saw an ophthalmologist who ordered another MRI to ensure no cancer growth in the optic nerve area - there wasn't any, whew! But the muscles around my eyes had increased in size 50% since my initial MRI before treatment.
They put me on a high dose steroid for the next seven days (50mg Predisone). Other than that, they recommended I buy fake glasses and scotch tape one side out to help with the double vision - it's helping (yet I keep thinking about funny it is that this woman went to BRAIN DOCTOR SCHOOL and fake glasses with scotch tape is what she prescribes) :) :) :)

Trucking along with some weird side effects! I feel like the steroids have been kicking in and my vision is slightly better. Wishing you all the best in your fights!

Jennifer

Primary 1B in 2014 - WLE and SNB negative. Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

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tkoss's picture
Replies 8
Last reply 3/9/2020 - 10:51am
Replies by: Casitas1, ed williams, tkoss, Sdmotorcop, sandyd77, Anonymous

I would like to think that since many here are getting immune system enhancers it will increase our resistance to the coronavirus.

true? false? comments?

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MarkR's picture
Replies 7
Last reply 3/10/2020 - 6:30pm

Hi All
Just thought I would touch base with an update
Got my first set of scan results on Thursday after starting the Platform trial combining Spartazimulab and Ribociclib with the result being stable disease. There has been a small amount of growth but it still falls within the stable category so quite good news!
On the other hand I spotted a dark mole on my wife’s leg and got her to get it checked out. After biopsy it has come back as Melanoma but thankfully only 0.6mm depth which was at least some good news.
Bit of a challenging week but through it now and just need to keep pressing on
Hope you are all well
Mark

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TimCT's picture
Replies 7
Last reply 3/9/2020 - 9:38am
Replies by: TimCT, jennifer83, lkb, MelMel, Lucas

Hi All,

Anyone else here have a palpable tumor(s)? I'm stage 4, though its all in my lymph nodes - the left side of my neck, in my left armpit and two axillary nodes on my right side. Both areas on the left side have been pretty swollen since January, which led to my eventual diagnosis.

Had my first infusion of ipi/nivo on 2/27, and by Wednesday afternoon of this week, I could swear that the lump on my neck is smaller. I haven't had much in the way of side effects yet, just some fatigue and low grade fevers.

Anyone else here have disease you can feel? What has been your experience with it changing size once starting treatment? I'm trying not to obsess over it but its hard not to keep feeling it and looking for signs of a response to the meds, short of having more scans. Curious if anyone else here has dealt with this too. Thanks!

Tim

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vp sf's picture
Replies 7
Last reply 3/8/2020 - 11:35pm

My husband was diagnosed stage 4 in early 2018. Started on nivo, and was NED by his first 3 month scan, He completed one full year of Nivo post NED, and then with his doctor's concurrence, stopped treatment. Still NED December 2019, but now scans show new lesions in abdomen and lung. My question is about recurrence: Anybody have experience with a situation like this? Or relevant data? He will resume Nivo and we will hope for repeat of great results. But would love to hear from others about their experiences or what they may know or have read on recurrence. Grateful--again--to have this group to turn to.

victoria

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Beany's picture
Replies 8
Last reply 3/13/2020 - 12:21am

Hello everyone,

Been reading the forum since initial diagnosis but this is my first posting.

Sex: Male
Age: 47

BRAF status: Negative
Primary location: right upper back shoulder blade
Primary thickness: 5.5mm
Ulceration: Yes
Mitotic rate: Not determined. I asked the doctor about this and he said the pathology determined ki67.
SLNB: negative
Skin graft 2.5cms margins. Margins clear. depth of 2cms.
Initial stage: 2C
Initial stage treatment: Interferon Beta monthly injections around primary from May 2019 to Feb 2020.
Recurrence: In-transit recurrence lump felt by myself on Feb 3rd, 2020. The doctor removed it and the pathology result indicated a melanoma tumor of 2 centimetres. The doctor then ordered a CT. The result of this CT came back on February 19 indicating metastasesin the liver and lungs.
Current treatment: Started combination Opdivo and Yervoy on February 21, 2020 (Opdivo 1mg/kg and Yervoy 3mg/kg). In order to manage possible side effects, the doctor has me taking 5mg Prednisone and 15mg Lansoprazole daily for 8 days. So far, I have experienced no side effects except very mild rash and mild fatigue.
Bloodwork History: 2018: LDH 193. AST(GOT) 31. ALT (GPT) 35 (before getting melanoma)
2020: LDH 334. AST(GOT) 56. ALT (GPT) 90 (3 days after starting Opdivo and Yervoy)

Timeline:
March 8, 2019: Referred to a specialist for suspicious mole.
March 18, 2020: WLE. and CT scans.
March 27, 2020: diagnosed with malignant SSM stage 2C. Thickness 5.5mm ulcerated. Clear margins from WLE, but doctor recommended full-thickness skin graft with additional margins of 2.5cms and SLNB.
April 8, 2020: Full thickness skin graft and SLNB. Clear margins and no lymph node involvement detected.
May 2019-- Jan 2020: Interferon Beta monthly injections around the primary. I was offered Interferon Alpha heavy dose but declined.
Feb 4, 2020: Recurrence. In transit 2 cm blob of melanoma removed between the primary and armpit.
Feb 18, 2020: CT scan
Feb 19, 2020: CT indicated metastasis in liver and lungs.
Feb 21, 2020: Started combination of Opdivo and Yervoy. Scheluded every 3 weeks for four cycles followed by every two weeks of Opdivo. Blood tests will be done one week before Opdivo/Yervoy.
March 4: Blood test scheduled
March 13: Opdivo/Yervoy 2nd fusion scheduled.

After four infusion of combo, I will go on opdivo every two weeks.

Any comments or advice is welcome

Thank you for reading,

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