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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Mom1021's picture
Replies 3
Last reply 10/25/2019 - 1:43pm
Replies by: Julie in SoCal, Mom1021

I have a pathology question. I’m hoping someone on this forum can help me.
I’m very confused about my diagnosis that I was given in August. I have a shave biopsy done that came back AIMP, with being consistent with Melanoma In Situ. I then had it surgically excised and path came back clear margins and residual
atypical cells. I was told by surgical oncologist the he “feels I had an atypical mole but “they” are calling it a melanoma so I’m going to treat it like a melanoma.” He has me coming every 4 months for re checks along with my dermatologist who wants to see me every 3 months for full body exams. I just feel very unclear. Was this a melanoma in situ or AIMP? When I addressed my concerns to my dermatologist he said well we would have treated this no matter what we would never have left it. I’m not questioning that, because I’ve learned that sometimes an Invasive melanoma can be found. And on my original path from shave it said that it could not be ruled out. So, my question is was it or not? This has me going nutty. Should I have my slides sent and retested just to be clear? I would pay for this from an lab that specializes in this. I just feel really being on my own with it and being my own advocate.
And information would be greatly appreciated.

Thank you, Christina Hafner

I have screen shots of my path but I don’t see where I can upload them to. I do feel seeing the correct terminology would be helpful.

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/24/2019 - 10:19pm
Replies by: Suzi, Affected

My lung biopsy was positive.
It's small and didn't show up on the pet scan. So upset, was feeling real positive all week.
My oncologist is putting me on Yervoy/Opdivo.

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sks2019's picture
Replies 1
Last reply 10/25/2019 - 5:44pm
Replies by: sks2019

My mom is on the ipi/nivo combo for her liver Mets,she was diagnosed last year with vaginal melanoma. Started on opdivo in feb 2019 , May 2019 her scans were good with no tumor only inflamed lymph nodes and August 2 liver Mets . she’s due for her 3 infusion next week. She is now getting vaginal spotting like we would see with menstrual cycles. It turned from dark brown to red ( sorry for the description) . I am scared is this a new tumor somewhere now ? Has anyone seen or experienced anything like this before ? Could it be any hormonal issues ? My mom is 59 and menopaused like 10 years ago.
Has anyone seen bleeding if the combo is working?

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/5/2019 - 9:41pm
Replies by: DoubleTT, JudiAU, Suzi

After reading all these stories about immunotherapy I'm a little nervous about it. I see my oncologist on the 4th to set it up. Not sure what it will be? He had said a combo of 2 drugs.
I currently take CBD oil 1500mg and it has helped with a lot of what I have going through so far. Has anyone else used it?
I'm getting my medical marijuana card next as well.
I have heard not to use any thc, is this true?

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happyfeet123's picture
Replies 2
Last reply 10/25/2019 - 12:04pm
Replies by: MelanomaMike

Hi Everyone
Just wondering how are brother from another mother is doing. I haven’t seen anything posted from Ed in awhile. The one thing we can count on is Ed’s research and Bubbles medical knowledge on almost every post.

I so glad Mike you are doing well. It’s a win for all of us.

Thanks
Tammy

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MelanomaMike's picture
Replies 9
Last reply 11/4/2019 - 1:15am

Hi ya'sll, sorry ive been MIA (missing in action) this past week or more, this incmga00012 & Epacadostat DRAINS the LIFE out of me! Haha, plus i recently broke out in a rash, lil' red dots everywhere except my face thank god lol..i see my team tomorrow so, it doesnt itch really, some areas but never lasts long, i have Benidryl, i guess it helps. So, tomorrows appointment consists of going down there to take my morning pills (Epacadostat) do bloodwork then leave, last week it included a 4hr observation after my dose, not this time! Its all gettin easier as the weeks move forward, the more they know im handling the meds ok, the less i have to go in! Its been a busy month or more with all the activities their having me do, next week is dance lessons...I hope everyone is ok? For the next few days, im gunna browse past and current posts and see whats going on with the MRF family, i sure love each and everyone of you ok? I gotta go to sleep, had a tooth pulled today, immunal therapies are terrible on the ol' teeth right?

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Hi all - I'm having a hard time sitting and waiting for answers so decided to post, even though I don't feel I have enough info yet to properly describe this. My sister, Leisa, has a new met - it's in the right frontal lobe and is already measuring 6x4x4. Her brain is clear, thank goodness!! and that's all we really know so far, other than her brain radio-oncologist has already said it's nothing that she would radiate. A bone scan is being scheduled and her regular CT scan was just completed two days ago, with regularly scheduled onc appointment on for the 29th. So, we won't know the extent of any other spread until all scan results are in. She's asymptomatic so far, in regards to this skull met but she does have new excruciating pain in her spine again so if the bone scan shows spread there we won't be surprised.

I am wondering though how they treat skull mets if they're not radiated. Treating mel onc has verbally said (on the phone) that they might have to biopsy, so I'm wondering how that is actually done >> will they just drill through the skull and remove a chunk for biopsy? Do they ever just remove a flap of the skull, take the tumour off completely ... similar to a craniotomy? (That would be my choice but this is not happening to me - my sister is terrified of that thought).

Onc has already stated that all treatments are back on the table in the event of recurrence ... so now were there. Again, it's too new to even have a plan yet - that'll be next week but I'm going crazy here wondering about this skull met. I have searched on here but not finding many "clear' answers and it seems, in most cases, radiation was done.

Has anyone had this type of recurrence? If so, how was it treated? And, what is the danger to the brain as this thing grows - other than spread, i.e., displacement, seizures, impaired vision, etc. >> can it "break through" the brain barrier just by virtue of being there (I mean other than systemically)?

Any info from our resident experts (Celeste, Ed) would be greatly appreciated!!!

Thanks.

Barb

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asleepinpa's picture
Replies 2
Last reply 10/23/2019 - 3:53pm

My pathology report appeared in my patient portal despite the fact that no one from the office called me. It said:

Biopsy results:
Atypical melanocytic nevus, junctional.
This lesion should be removed completely because solitary melanocytes predominate over nests. The lesion extends to one lateral margin.

Microscopic Description:
Relatively monomorphous melanocytes are situated as nests and solitary units in the dermal-epidermal junction. In foci, single melanocytes predominate over nests.

I see some things inhere that look suspicious, and some that do not. Any thoughts?

Thanks, in advance, to whomever takes the time to look it over.

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Julie in SoCal's picture
Replies 16
Last reply 10/30/2019 - 12:10am

Good afternoon, Friends!

This is just to give you a quick update on where I am and what's happening: Tomorrow I'll have a bronchoscopy and (hopefully) a biopsy of the hilar tumor. We need to find out if it is Mel or Larry the lung cancer so we know how best to treat these suckers. But either way, I currently have active NSCLC. and active melanoma -- 8 more critters have popped up on my arm. They went from 1 small one to 8 visible ones pretty fast.

Yesterday when I talked with my Rockstar Doc he said I was complicated and he would need to do some thinking. I figure he's burning some brain cells on this one. I should know more next week Wed. I will let you know how things turn out.

But on the fun side, I've finished painting (for now) the trailer:
http://www.tnttt.com/gallery/image.php?album_id=5029&image_id=159766][im...

Ok, I guess I don't know how to insert a link on this board...

Shalom!
Julie in SoCal

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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Bobman's picture
Replies 4
Last reply 10/23/2019 - 5:36am
Replies by: Bobman, doragsda, Bubbles

After getting passed around to three different surgeon's, finally got on the schedule to attack my 12th primary with moh's. Considering what had been proposed for removal of this one, I am breathing a sigh of relief . Never had moh's before, so new to me what to expect. But since this insitu is smack dab covering my tragus, I'm all about less is better. Soonest I could get on the schedule is mid November, 6 weeks post biopsy . In the big picture, I guess that's not so bad.
I'll let you all know how it goes.
Aloha,
Bob

We are one.

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gopher38's picture
Replies 7
Last reply 10/23/2019 - 10:31pm

Little update with TL;DNR question

Q: What do people think of ports? I did a year of every-two-week infusions and blood-draws, 3-month scans, etc. between Feb 2018 and 2019 with just pokes in the vein. Didn't bother me much, but I'm tougher to get a vein than nurses imagine when they first see me. I have very visible veins, but it usually took a couple or three attempts before they succeeded. Turns out that I'll be starting the combo now on Nov. 1st. Not sure how long (I'm sure we'll discuss it on the 1st visit), but I'm guessing maybe two years (if I'm lucky, meaning it's working). I saw that there was a thread about ports a couple of years ago, and the majority seemed to think that they were a good idea. Wondering what the current group thinks? I'm hoping to stay active (mostly biking) during treatments. Thanks for feedback.

General update: as background, I was DX'ed 3b back in Jan 2018 with mel on upper back. Blind clinical trial of either nivo or nivo/ipi from Feb 18 to Feb 19. All clear scans during that time.

Aug 19th derm visit showed 3 new suspicious moles, which all came back as mel. New spots widely dispersed from butt to shoulder. CT scan and PET still clear though. Onc decided to treat them as new primaries with 3 simultaneous WLE/SNLBs (all positive for trace mel), but ... new derm visit a couple of weeks later showed 4 new small spots/moles (really probably just not noticed before) on back. All mel, so 8 cutaneous spots, all pretty much on back, butt and shoulder, which they now think is spread of original on back, so stage 4 (and 3 additional WLE/SNLBs were unnecessary).

Liked my onc, but I really don't think he's a mel specialist, so decided to look for someone more focused on melanoma. Doctor's recommendation led me to a guy at UofMinn Masonic Cancer Clinic, who I really liked, so I'm transferring there.

Also, unblinded from clinical study and I was only getting nivo, and they FINALLY tested from BRAF, which was positive.

Another CT scan and MRI when I transferred to UofM both still showed nothing other than the ground-glass area, which didn't light up the PET, and the new onc thinks is residual from nivo treatments (main side-effects for me were shortness of breath, coughing and irritation in lungs). So still no tumors that they can see inside, but spread on the skin.

I feel like the opdivo was doing something, but not enough to knock out the mel. Now going to try the combo. Hope it gives the opdivo a little extra boost. Think treatments will go on longer than the year from the trial, at least I hope so.

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sks2019's picture
Replies 5
Last reply 11/4/2019 - 1:23pm
Replies by: sks2019, Becky, MelMel, Bubbles

Anyone here know or is a Mucosal melanoma survivor ? I am wondering have the stats really changed for mucosal melanoma patients as well ? or they are still the same ? My mom was diagnosed with vaginal mucosal melanoma oct 2018 and is now on her second dose of ipi/nivo with only fatigue and headache as a side effect , nothing major as compared to other folks here who had success. So I am afraid if the combo is working for her. Good luck to all of us fighting this day in day out.

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richard24's picture
Replies 3
Last reply 10/22/2019 - 7:16am
Replies by: tedtell1, richard24, Linny

Hi everyone. Thank you all for your great contribution and support through this forum. I have learned much more than I could’ve by searching random sites.

In July I was diagnosed with Stage 1a Mel on my right forearm (.2mm Breslow, Clark level 2, no ulceration) and had it removed via WLE August 1st(clean margins). A couple of months after I had a CT scan of my chest area or served by my primary after feeling some tingling/numbness on my left armpit(opposite side of my Mel).

A month ago I was told results came back clean, but was just informed by my dermatologist there was a small 3mm module found on my right lung that the tech was not concerned about. She would like me to have another CT before our next appointment(5 months). Should I push for a scan earlier? Anyone have any experience with Stage 1 showing up in lungs without any sign on the armpit lymph nodes?

Sorry for any typos. Typing from my phone.

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Summer S.'s picture
Replies 8
Last reply 10/25/2019 - 12:43pm

Hi everybody,

We have been on Taf/Mek for 5 days now, the first 3 days was reduced Taf dose +full dose Mek (no side effects), then as soon as we started on the full dose of Taf fatigue appeared.

My mom has been feeling tired all day, she would sleep for 1-2 hours and stays up for 1-2 feeling well before she feels the need to sleep again.

She is eating well, but drinking less water due to less hours she is awake in,

Do you know what could be the cause of that?
Do you have ideas or experience in treating or at least handling fatigue?

Thaaanks!

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