MPIP: Melanoma Patients Information Page

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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momand2girls's picture
Replies 1
Last reply 7/4/2019 - 2:48pm
Replies by: jennunicorn

Hi all,
So, post melanoma dx, I had 3 moles escised/biopsied. Two I identified myself and one my derm picked up on in my regualr 6 month visit in June, after the melanoma adventure.

So, all 3 were atypical, but NOT melanoma. 2 of the 3 were completely excised. I have to go back so she can get a little wider margin on the 3rd but it is not urgent-will go later in the month. I am now having my husband take pictures of every mole I have so I can se eif there are changes. This one on my knee--I swear was not there 3 months ago--went to shave my legs last week and there it was..... but who knows, it could have been there.

In the middle of all this I had some conversations with family members, a couple of whom have had melanoma. One of my family members, an MD mentioned that many of his colleagues recommended that plastic surgeons be the ones to take out these melanomas. He has friends who are pathologists and they don't recommend Moh's surgery for this--I have not had Moh's surgery, only escisions, but the doc who has been doing these is a Moh's surgeon. I hope to never rneed this, but I was curious about your opnions.

thanks

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yggdrasil's picture
Replies 1
Last reply 7/4/2019 - 10:38am
Replies by: kareylou

Greetings friends ..

i 21 yr old and tomorrow i will be checked as i have about >4 mm big bulk on my knee and its reddish and just a small amountof skin aound it is reddish aswell.i remember seeing a bulk 4-5 weeks agoo but thought its nothing,after today as i have done alot research what it ould be i have now big reason to assume its melaNoma and when now its about 4-5 mm thick it's not really the best sign for me whhat i will find out tomorrow. .. nice forum btw,found it while gatering all ino on how bad situation is for me :/ i dont care im ready to find out the worst and im just sorry for the people around me , must be devastating for them to see whats coming .. ah fck it af i guess :D

wish everyone thhe best

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smiller's picture
Replies 9
Last reply 7/3/2019 - 11:33pm

"I seem to remember something like if you're going to recur after keytruda, you'll do it sooner (within 2 years) rather than later. But I could be wrong."
Quote from a previous post.
This has entered my mind almost daily. The ifs, ands and what if and when...….
My husband wants no more scans. Stopped Opdivo/Yervoy after three treatments because of side effects. Diagnosed stage 4 Feb. 2017 and last treatment was June 2017. He was having scans every three months until the last one in March of this year and next one (got to skip to six months) is scheduled for October. All scans have shown tumors gone with only one very small one remaining.
No more scans. I don't know what to think or say. He says no more treatment, so why do the scans. Well--I want to know if it is returning. I can see his point to a certain degree but I would like to hear "clean scans" and not have to wonder when (if?) things take a turn for the worse.
Thanks for any advice.
Jim's wife

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Replies by: cancersnewnormal

Last ASCO report I have planned. Do have some upcoming reports from other sources via intense lit review in May and June for those who are interested. This post covers the latest update to the results from the CheckMate 204 trial looking at the ipi/nivo combo in folks with melanoma brain mets as well as a report looking at the long term outcomes for peeps with advanced melanoma treated with ipi/nivo.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/07/ipiniv...

All my best to each of you. Celeste

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JS41989's picture
Replies 3
Last reply 7/8/2019 - 9:07pm
Replies by: Summer S., kareylou

I came to the board about 6-7 weeks ago after I went to my first skin exam (I turned 30 in April and went based on the recommendation of my doctor) where they removed 5 moles for biopsy. 4 of them came back benign but 1 came back as moderately dysplastic. I returned a week later where they took margins and removed 5 additional moles. Just wanted to let you know I received clear margins on the 1 and received "all clear" news on the others. That makes 10 suspicious moles removed with only 1 "bad guy" as my dermatologist put it. He told me that even though I have a lot of other moles (25-30) he said he took off everything he was really concerned about and rather than keep picking me apart would like to see me in 4-6 months and see me at least every 6 months for the next year or two. He said at each exam he'd track if he (or I) notice any changes and take off 1-2 as a precaution. Ultimately doesn't seemed concerned but just thinks this will be part of my new normal.

I still get anxious sometimes that he didn't take off everything he should have or maybe missed one. However, I am trying to remind myself that going every 4-6 months is the best I can do and I can't obsess over it. Easier said than done I guess.

JS

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sarah7606's picture
Replies 6
Last reply 7/3/2019 - 5:02am

This is my first time posting and I’m just after a bit of advice if possible,
I was diagnosed with melanoma in situ with a large flat freckle on my palm in August ‘18, I had a wide local excision and full thickness skin graft in the September. Fast forward to last week and a small red lump developed practically overnight within the graft, in the ‘clear margin’ area between where the original melanoma was and the scar surrounding the skin graft, so I know it’s not a keloid scar, nor is it a blister, cyst or pimple. There’s no broken skin, it doesn’t hurt (the graft is numb anyway) the texture is normal-no scaling or roughness-it’s very small, roughly 4-4mm, it’s not rock hard but it’s firmer than the surrounding skin.
Has anyone had a recurrence like this within a skin graft, or has anyone had anything like this and it turned out to be totally benign?
I know my original melanoma was in situ so I should try not to worry, but I’ve read countless cases of either misdiagnosis or in situs which have spread even after removal.
Many thanks in advance, Sarah

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cjm22's picture
Replies 18
Last reply 7/8/2019 - 9:18pm

Hey everyone, not looking for advice, just documenting my husband's story here since it's been a while since I've checked in with updates.

After doing really well on prednisone, about a week after he was done with that (end of May) he developed severe fatigue, increasingly bad headaches, severe nausea, double vision, and increasing confusion and memory loss. It was very reminiscent of dementia. There were a couple false starts and uncertainty about what to do but he finally ended up in the hospital this week after an MRI showed ventriculitis, or inflammation in one of the ventricles in his brain.

The doctors aren't sure of the cause yet. It could be an infection (bacterial or viral or fungal), or it could be disease progression. He's been at the hospital most of this week while the docs do tests on his cerebral spinal fluid to figure out what's happening. He's on antibiotics in case it's an infection. If it's disease progression, I don't think there are any more systemic treatments for him since he has tried taf/mek, ipi/nivo, pembro, and ipi/pembro at this point. He's also very weak and confused so I don't think he'd be up for another strong drug. But right now we're still hopeful (!) for a brain infection, which we can at least treat with antibiotics or antivirals.

As the days pass he's become less coherent and harder to rouse. He just had another CT scan of his brain to see if something might have changed again.

I miss him very much. The past month has been very hard while he's been so confused and unlike himself. I'm scared this is the beginning of the end.

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MelanomaMike's picture
Replies 14
Last reply 7/8/2019 - 9:22pm

Hi guys, that was the worse experiance ever (Colon and Endoscopy, i think it had to do with me not taking my Livothyroxin and Hydrocortisons for 2 1/2 days, i couldnt sleep, no energy, couldn't stop stretching wich was wierd! Directions said no meds except heart meds and i dont take that...when i got home later that night i took my Megace cuz i had no appitite now today im better and eating small stuff and slowly gettin stronger...
My initial findings are a Large 18cm submucosal mass in the Sigmoid colon (aparently my test doesnt reach the Jejunum as i expected, different test called a Deep Bowel double Balloon Enteroscopy, then theyll see the Jejunum. I was upset, i thought this took care of that!)
Im Anemic (Anemia) probably from blood loss during bowel movements from these masses...Mild Gastritis, Duodenitis and that it for an early result. But gosh darn! 18cm in Sigmoid? I should ask is that a round mass or 18cm long mass? Thats 7 inches or so in American talk..i was expecting another mass other then what lit up in my Jejunum, my CT sized that at 12mm a few months ago...
Melanoma sucks!..anyways, biopsies where sent to the Pathologist now we wait guys...love ya all deeply, my peeps..

Im Melanoma and my host is Mike..

www.covvha.net

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Momand2kids's picture
Replies 3
Last reply 6/30/2019 - 10:23am

Hi all,
I was dx with a stage 1 melanoma a few weeks back. As I mentioned here before, surgeon said there was nothing to be concerned about -they got it all.... no further treatment necessary. Today I go back so she can do a wider excision on another mole that my derm found in my June regular skin check that is NOT melanoma but is unusual and he wants a wider margin. Since I will be with the surgeon, I am going to ask her to look at a mole on my chest and my leg that I have noticed (I suspect I am super duper hyper vigilant at this point). Are there any other questions I should ask her--- I just don't know what I don't know..... and I am always reluctant to check google. I don't think she or my derm would have any reason to mislead me on my diagnosis-- but I have this low level anxiety about this now (plus I have barely gone outside during the day since April except when we were on our family vacation or to go to work---this is crazy!!!!

I so appreciate your wisdom-thanks so much

Momand2kids

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Anonymous's picture
Replies 2
Last reply 7/1/2019 - 12:12pm
Replies by: jillywonka, Bubbles

I am a 41 year old healthy female that was recently diagnosed with desmoplastic melanoma. The sun damage melanoma and most cases are in the neck and face. It started as a freckle on my upper lip and grew in size and the color was getting darker. I had 2 shave biopsy (nov '17) and (jan '18) because the freckle reappeared. The recent punch biopsy (april '19) was diagnosed as: atypical compound melanocytic proliferation, favored desmoplastic type, Clark level IV, 1.8 mm in depth, extending to peripheral edge and deep base of biopsy. My dermatologist immediately sent me to Moffit, Tampa, FL and I am going to have surgery/reconstruction, but prior they are going to put me through a clinical study testing MK-3475 (pembrolizumab) I guess the same as Keytruda, for three cycles (9 weeks). The goal is to shrink the tumor prior for surgery.

I am scheduled for diagnoses CT scan July 10, and will start treatment after. I have read some of the side affects just curious what others are experiencing with the drug and if anyone else is doing the clinical for similar diagnoses.

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Lucygoose's picture
Replies 5
Last reply 6/30/2019 - 9:55am

Got my 6-week post surgery scan results. STILL NED!!! That’s the really great.

The side effects were secondary adrenal insufficiency and hypothyroidism due to combination treatment wiping out that part of my pituitary.

I am thrilled to be NED!!! I hope this clinical trial leads to better treatments for the future. I also hope they figure out how to control the side effects. I’m good with taking replacement therapy for the rest of my life, but I know they are trying to dial back these types of side effects.

Here’s to everyone one the board! Hope all is well with you.

Lucy

Lucy

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MelanomaMike's picture
Replies 2
Last reply 6/27/2019 - 11:20pm
Replies by: gopher38, chrispl1974

Hi guys, hope this finds you all well, tomorrow at 2:30pm is my Colon and Endoscopy, man! The prep is nothing nice, the first stuff they tried yo give me Colyte i couldnt even drink! Its like Ocean water! Thank god they said i could do the Miralax, that has no taste! I was worried there for a minute cuz i have to get this done, something lites up during my scans in my Jejunum...
Anyways guys, ill tell ya whats going on afterwards ok?
Take care...

Im Melanoma and my host is Mike..

www.covvha.net

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Bubbles's picture
Replies 3
Last reply 6/28/2019 - 1:13pm

Links attached that show results to anti-PD-1 therapy in melanoma patients as reported at ASCO 2017 and 2018 with a report from this year that takes a retrospective look at folks who initially responded to anti-PD-1 and were retreated upon progression later. If you're interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/anti-...
les

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