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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BRR's picture
Replies 10
Last reply 11/15/2020 - 2:02pm
Replies by: BRR, Mark_DC, Evan2027, MelMel

Hello,
My father has 5 metastasis in lung lymph nodes in the hilar region. He also had two tumor removed by VATS procedure in march which confirmed it as melanoma. In july he started receiving the Opdivo therapy. So far he completed four cycles. Three days ago he started coughing and it is getting worse every day. Could this be the side effect of the therapy or have the metastasis progressed? He is scheduled for a CT next week but I would like to hear your opinions because I am very concerned. Thank you all in advance.

Ana

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tkoss's picture
Replies 1
Last reply 11/14/2020 - 9:30pm
Replies by: Mark_DC
Erica82's picture
Replies 7
Last reply 11/14/2020 - 3:20pm

My husband is to begin Keytruda again next week with the addition of Leukine subcutaneous injections for the purpose of supporting wbc growth. From my understanding, Leukine has been used in clinical trials with Yervoy with the incidental finding of decreased drug toxicity from Yervoy. Does anyone have any information on the effectiveness of Leukine when used along with Keytruda? Thank you in advance for any info! - Erica


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MelanomaMike's picture
Replies 16
Last reply 11/13/2020 - 3:25pm

Hi family, i hope you all are well and stable im here at Cedars Sinai, the pain i was having in my ass as we already knew, is fact Melanoma and is growing into nerves in my rectal area! Aaaaaaggghhh!!! The pain was to much i tapped out and here i am. They ran test did another CT scan and the tumors are growing fast as hell as well as the 2 new tumors on my liver, comparing August CT scan to Mondays scan ill get you all numbers later, i can barely type and read, msinly because my new buddy named PCA has me doped up in Hydromorpone Diludad i can press the trigger every 15 minutes, theres limits but forget the time sequence blah blah..My clinical trial has been paused, i never started it remember? I didnt make the appt to sign papers, so, Dr. Hamid has new plan, do a Nerve Block and low dose radiation to the tumors in my rectum for relief, more long term relief that way we can possibly look at some well tolerated "chemo" types, Cisplatin etc. We need to act faster then before i guess, this latest CT said all he needed to see. I saw the radiation folks, sounds doable and i do the Nerve block tomorrow at 11am and another CT scan for the radiation folks so they can do what they called a "body layout" of me lol...
Well guys i gotta go, i can barely see i love you and ill be back to give you the latest....Melanoma Mike

What doesn't kill you only makes you wanna Go After It And Kill It! www.covvha.net

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Jw2457's picture
Replies 11
Last reply 11/13/2020 - 2:56pm

Hi there - I posted a few days ago about having been diagnosed with melanoma on the scalp recently. Here's what my path report says:

"Outside pathology report from 11/01/2020 was reviewed showing right vertex scalp shave biopsy malignant melanoma, at least 0.9 mm to the base of the specimen, no ulceration. Peripheral margin is involved by invasive melanoma and melanoma in situ. Deep margin is involved by invasive melanoma and melanoma in situ. No lymphovascular or perineural invasion. Tumor regression present."

Now, I have already gone to a consultation with a surgeon at Wash U/Siteman in St. Louis and was all set up for a surgery on 11/17 however yesterday they called me to tell me my surgery was on hold because as part of their process, the received the slides from my dermatologist's path lab and are now examining them at their own and their pathologies are not convinced that what I have is melanoma.... Whaaaaat?

So, the surgery is on hold but I am waiting to hear back on results.. they're doing some additional tests and stains is what the nurse told me. Has anyone heard of this happening?

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Anonymous's picture
Anonymous
Replies 12
Last reply 11/11/2020 - 4:32pm
Replies by: dparker, MelMel, tkoss, Johnjk04, gopher38, Anonymous

I had a melanoma surgically removed from the back of my neck about two years ago. Biopsy indicated 0.2 mm, Clark Level 2. Check up every six months. Last checkup, my dermatologist wanted to do a pet scan. I questioned it based on other opinions on the internet. Primary physician was not sure. So about a week later, I went to a different dermatologist and they did another full body exam. They did a biopsy on two spots on my back that were questionable. Turns out, one was melanoma. Again, about the same level as the one on my neck. It had been there for at least two years. I could not believe the first doctor missed it. Today, I go in for consultation with the oncologist. I am just trying to decide on the necessity of the pet scan.

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space oddity's picture
Replies 8
Last reply 11/10/2020 - 5:31pm

After six and a half years from his initial diagnosis and four years after recurrence, a failed yervoy and targeted therapy and finally after two and a half years on keytruda, my husband's scans ( pet scan and brain MRI) are absolutely clean! We couldn't be happier and I would like to share this with all of you. I have learnt and still learn so much from this forum, from all of you brave people. Thank you all. We thought that we would live with melanoma as far as it goes, because the tumours were stubborn for a long time. It takes a lot of hope and patience, but some drugs can really do wonders. I wish you all health.

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boatski's picture
Replies 6
Last reply 11/10/2020 - 5:24pm
Replies by: MelMel, boatski, Daisy2018

Hi all,

Quick question for anyone who understands Melanoma and responses (is there anyhow haha?). I'm now 8 months post excision and SLNB. Officially 2b. I found a bump on my SNLB scar and went in quickly for a biopsy. The oncogolist didn't think it felt like cancer and it seemed fairly close to the surface. My spouse thought it was just a cystic acne. They did a FNA. They actually read the results right there. I was told that so far they did not find any melanoma (yet). They did find inflammation, which they said would be consistent with acne and other things. However, they wanted to do more tests and dyes because inflammation can be similar to melanoma. I've tried to read the scientific articles on the relationship but am confused. I'm told not to worry, but that's not happening haha. Has anyone had experience with this? Does inflammation look like melanoma or is it different somehow? I'm reading that inflammation seems to be the path for melanoma to spread to other parts of the body, which seems pretty disheartening.

My spouse also said that the bump was getting smaller before the FNA, but has since flared a bit. We took the getting smaller as a good sign, but not I'm back to worried :)

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tkoss's picture
Replies 1
Last reply 11/10/2020 - 5:12pm
Replies by: MelMel

the best response i got the question from onc is that there a half life to Opvido and so most Opvido would be out of your bloodstream in 2 months.

not science.

so still no real scientific answer on exacerbating effects of Immo on a covid patient.

then there is this: https://www.sciencenews.org/article/covid-19-coronavirus-immune-system-c...

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Jw2457's picture
Replies 11
Last reply 11/10/2020 - 1:03am
Replies by: JudiAU, Daisy2018, Gene_S, tkoss, Jw2457, boatski, Anonymous

Last Tuesday I received the biopsy results for a spot I found on my scalp (new mom, dirty hair.. scratched head and felt bump. Decided to go to dermatologist ASAP as spot looked.. not great. Had no idea it was there previously). It’s melanoma. The biopsy was truncated so it’s at least .9mm deep, could be greater.

The pathology report says: “Outside pathology report from 11/01/2020 was reviewed showing right vertex scalp shave biopsy malignant melanoma, at least 0.9 mm to the base of the specimen, no ulceration. Peripheral margin is involved by invasive melanoma and melanoma in situ. Deep margin is involved by invasive melanoma and melanoma in situ. No lymphovascular or perineural invasion. Tumor regression present.

Can someone help me understand what some of this means? Is there any good news to glean? I have a lymphoscintigraphy with SPECT scan and WLE scheduled for Nov 17 at Washington University/Siteman Cancer Center. I will likely do the flap reconstruction (I think that’s the correct name?) so I can hopefully keep a full head of hair.

I’m so nervous. I have a 13 week old and a 4 year old and this diagnosis has me shook. I grew up in FL and my mom was not great about applying sunscreen and doesn’t at all for herself so this is likely stemming from my history of bad sunburns as a child. As an adult I am far more responsible and have never used a tanning bed.. I generally wear sunscreen if I’m outside for any length of time and am obviously looking at adding SPF into my DAILY routine now. I can’t stop thinking about this somehow affecting my ability to watch my children grow up and I realize my diagnosis isn’t horrible but not knowing it’s true depth or if it’s spread.. the idea it could come back.. this is new and terrifying.

If anyone can offer some explanation of my path (to my surgeons credit he DID go over some of this we with but I was overwhelmed and didn’t know what to ask—ex. He didn’t mention regression or lymphovascular invasion.. I have no clue what those things how they affect my situation.

I’ve also only had surgery as a 12 month old, outside of my wisdom teeth so anything to ease nerves about that or the reconstruction would be.. appreciated. I’m a mess, sorry! I know positivity plays a huge role in these situations and I am mostly in good spirits but it comes in waves and right now I’m low.

Thanks in advance.

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Mk517's picture
Replies 2
Last reply 11/9/2020 - 11:32am
Replies by: Daisy2018, gopher38

Hello all,

I'm a bit of a board lurker, always turning here for information but not posting myself. I am posting today because I am looking for anyone who has had a similar recurrence as me.

Other than a melanoma history that keeps growing, I'm an averagely healthy 37 year old... After a craniotomy, cyber knife, and immunotherapy for brain mets last year, I was basically NED. I got through the 4 doses of opdivo/yervoy so when I started having horrible neuropathy symptoms (waking up with my hands feeling like they were on fire), I was told it was ok to stop and we would keep monitoring my CT scans -- which are always clean until there's a PROBLEM.

The past couple months, I have been having increasing leg pain. I was always told told that it was neuropathy from the immunotherapy, bounced into some prednisone, and it got better. In the last month it did not, the pain was unbearable, I wasn't able to sleep, or really get around at all, and I wasn't able.to go to work. Had extra brain MRI, everything was fine. Finally had a lubar/sacral MRI and they found a 2cm mass in my spinal canal pressing on the cauda equina and causing all these symptoms. I just had surgery to remove as much as they could, sparing the nerves, on a Tuesday and came home from the hospital today.

My pain is already SO much better, but I know I have a road ahead of me. Need to get a better handle on what's going to happen next... My neurosurgeon mentioned radiation (not all of the tumor was able to be removed and I read in a scan report that there may be at least 1 other smaller mass near T12 but no one has actually told me that) and I guess I will need to go back on immunotherapy.

I'm just SCARED cause I don't know why I can't get this OUT OF MY BODY. What else can I do? Has this happened to anyone else and what treatment did you do? What should I be doing to advocate for myself???

Any personal experience or advice welcome. Sorry for rambling.

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THMoore's picture
Replies 10
Last reply 11/9/2020 - 10:15am
Replies by: THMoore, Anonymous, triciad, Bubbles, Daisy2018, Sdmotorcop, Mark_DC, Edwin

OK here's the latest with my voyage down the IPI/NIVO lane. My first dose, I only had a rash and fatigue. My 2nd infusion, I loss my thyroid, got extreme fatigue and fever. Now after my third infusion, I have a rash, fever, loss of thyroid, starting to lose pituitary, throwing up and dry heaves, and severe diarrhea to the point I thought I was going to die. I am on steroids now to help with the symptoms. Wow, I had no idea, I was even having diarrhea. Anyway, I have pushed back my forth dose and scans. There is no way I can travel until these items reside. LDH and other blood work still mostly normal with exception of thyroid and pituitary.

I am to the point I don't even want to know my status. Is this wrong? I feel like I just want to live out what time I have without knowing what's happening. Rather just get sick one day and go to the hospital. Am I crazy. I am just tired. I really don't know how everyone goes on and on. Maybe Im just having a bad day. All I know is man this last dose, sure hurt. MDA still wants to give me another, no matter the results. I just wanted to hear some thoughts and opinions from my friends and warriors.

Much Love Trent

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Anonymous's picture
Replies 5
Last reply 11/7/2020 - 12:09pm
Replies by: Anonymous, Ellie_82, SABKLYN, tkoss

To start, I haven't ever been diagnosed with melanoma, but I hope you all don't mind the intrusion! I have a question about skin check frequency.

For background information, I am heavily covered in freckles and moles. I've had over a dozen second degree blistering sunburns in my childhood. No sunscreen would work and I would blister within an hour of being outside. I lived in Southern California and that often meant wearing hats all the time and being uninvited from beach birthday parties because parents would panic when they noticed my blisters, even though my parents would warn them that I would likely burn no matter how much sunscreen I used. To top that off, I have a family history of skin cancer and I also used tanning beds occasionally in my college years before I gave up on ever getting a tan because I would just burn in them, even if I was only in them for 5 minutes.

Currently, I'm 24 years old and I'd guess that I have a few hundred moles and thousands of freckles. I have essentially no unblemished skin - even my lips and eyelids have freckles. The main problem, and the one that's prompting this question, is that I tend to grow kind of weird moles. I have a lot that are irregularly shaped and have multiple colors and variations in elevation. I also grow them really quickly, though it's hard to really quantify how many I grow in a year because I have so many that they're impossible to keep track of. I really only notice the ones that are obvious, for example a new one that I got this year on the palm of my hand.

What's prompting my question: I had my annual skin check this summer and the dermatologist gave me the all clear on three moles that I had asked her about. Recently, I was just rubbing my lower back and I noticed a new raised bump a little above one of the ones I had her look at. I know it's new because I have pictures of that area and it was immediately noticeable by touch and the feeling of it weirded me out enough that I immediately got up to see what it was. The odd thing is that it's a white./pink color and its perfectly raised, which for me is unusual. As in, almost all of my moles are a mix of brown colors and unevenly raised or mostly flat. I don't have a single perfectly raised mole. I know you all can't actually speak on if something is concerning, but I figured I'd add a (super bad) pic anyways: https://i.postimg.cc/K8zPCJ8W/IMG-2875-2.jpg

I'm assuming it's a mole since I couldn't pop it or scratch it off (though I did manage to scratch it a bit) and it didn't dimple when squeezed like I read most fibromas would.

I'm wondering if, in a case like this, it's better to just wait until your next annual exam or if it's okay to schedule a new one. I've read the rule of 'wait 8 weeks if you notice something new' but at that point, would there be such a difference between waiting 6 weeks and waiting a few more months?

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Bubbles's picture
Replies 7
Last reply 11/6/2020 - 11:07pm

Not sure if these strange writings interest anyone here - but thought I'd stick this one up: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/10/ketchu...

I share it to show that -
1. Personal advocacy can be difficult for all of us. Just keep plugging away at it!!!!
2. Even the nasty bits can lead to a laugh and hope - at least sometimes.
3. For all that melanoma treatments fall short for far too many of us, I am a example of the good they do - 17 years post diagnosis with Melanoma Stage IIIb. TEN years - yesterday - NED for melanoma after advancing to Stage IV.
4. My meatloaf recipe with its ketchup topping is pretty dang rock'n!!! Give it try!

May your Halloween be filled with more treats than tricks! love, les

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Evan2027's picture
Replies 4
Last reply 11/6/2020 - 10:55pm
Replies by: Daisy2018, Evan2027

Hello Everyone,

How important is LDH level in getting a prognosis for metastatic melanoma? My Dad had LDH slightly above 1000 when spine bone mets were found. A week after the first radiation day (5 days total) the value had gone down to 450ish. Based on reading various things online that is still above normal but good to be below 1000.

Also, what is considered low vs high tumor burden? My dad has a small left lung lesion but multiple spine bone mets. The spine bone mets were treated with radiation more as a pallative treatment before deciding on any future treatments. It seemed like when only the left lung lesion was considered the treatment recommendations would have been given a higher chance to succeed (more recommended). Once the spine bone mets were found the two treatment options were only given 20% chance to help. Still working on a second and maybe third opinion.

-Evan, Peace and hugs to everyone

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