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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richard24's picture
Replies 1
Last reply 10/21/2019 - 9:29pm
Replies by: 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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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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Mucosal melanoma being so rare and old stats out there. I am wondering are there folks on this board who had/have mucosal melanoma and have benefitted from the ipi/nivo combo ?
I read so many positive stories about the combo but not a single one relating to mucosal. Calling out long time mucosal melanoma survivors.

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Hitchens's picture
Replies 2
Last reply 10/21/2019 - 1:09pm
Replies by: sks2019, Hitchens

I am 3 years out from 3a diagnosis and have had nasal congestion for over 8 weeks. I originally dismissed to persistent head cold and finally went to GP last week. I am on a steriod that has reduced the congestion but the sense of smell has yet to return.
I have googled and have found limited if any relevant information related to melanoma and my symptoms. Though I am under the care of an ENT I don’t want to waste his time for a possible sinus infection.
Has anyone had any experience with my symptoms being related to a recurrence?

Take care

What can be asserted without evidence can also be dismissed without evidence.

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Johnjk04's picture
Replies 2
Last reply 10/21/2019 - 11:09am
Replies by: gopher38, Bubbles

For all of us in the battle, there is a great film that is being released now. Dr. James Allison has his biography and also all the challenges he faced with the pharmaceutical corporations.
Go to breakthroughdoc.com for all of the information.. This doctor is our true life hero.

John J Kissane

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KMann's picture
Replies 6
Last reply 10/21/2019 - 12:38am

Hello. I had surgery in 2017 for a Stage 1A melanoma on my bottom right leg. At times the scar area swells a bit, or aches,, but lately I've noticed a sharp "needle" feeling, in the scar area. My friend thinks it's nerve damage, which could be possible. However, it didn't hurt like this a year ago. It comes and goes lately and only lasts a couple of seconds. Is it possible scar healing can produce this feeling two years after surgery? Or should I be concerned?
Thank you!

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Sus69Riez's picture
Replies 2
Last reply 10/20/2019 - 3:50pm
Replies by: mrhubahuba, EllieS

I am on Braftovi (encorafenib) and Mektovi (binimetinib) had melanoma Situ stage on scalp 2006 and on face Situ stage in 2017. Then in March 2018 had swollen lymph node removed from neck which I was diagnosed stage 4 melanoma. Was receiving Keytruda and scan showed the cancer around are of surgery was clear after about 8 months but scan also showed spot on lung that grew while on Keytruda. The spot on lung which Biopsy showed was melanoma and so now on the Mektovi and Braftovi. Scans show nothing elsewhere so feel blessed but so worried. Had side effects with the new meds but was just given prednisone which is helping. Only been on 5 days straight and not sure when I will see results but probably will be 3 months from my last scan before I know anything due to insurance not allowing more scans.

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Anonymous's picture
Anonymous
Replies 6
Last reply 10/21/2019 - 11:41am
Replies by: gregisblessed, Bubbles, casagrayson, Anonymous, Michael2.0

3.5 years following a WLE/ skin graft for scalp melanoma, I feel a 2.5mm papule in the center of the excision very near the original mel. It is pink, no discoloration otherwise. It has been submitted for biopsy? Probably a dumb question but can this be anything but melanoma return?? It did not burn, itch or bleed and I was just examined by derm 2 months ago. Feedback appreciated.

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wendywjj's picture
Replies 3
Last reply 10/20/2019 - 3:52pm
Replies by: mrhubahuba, EllieS

My mum stage 4 got Yervoy+Opdivo last year May, then remain on Opdivo.
It started to work around August and approached to CR this spring.
But now it got back again from CT scan. So it seems Opdivo does not work for us anymore.

Have you encountered this? Should we get back to Yervoy?
Suggestions and experience sharing are welcomed.
BIG THANK YOU!

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gregisblessed's picture
Replies 1
Last reply 10/21/2019 - 8:37am
Replies by: Bubbles

From December 2015: First post, first time here. Diagnosed with scalp (crown) melanoma, 1.65mm depth, no ulceration, December 2015. CT and PET were clear, SLNB resulted in removal and biopsy of 11 LN, all clear. Excision of scalp with clean margins (skin graft from thigh).

The path report says mitosis however my derm and surgeon say recurrence likelihood is low.

Yesterday, 10/16/2019, almost 4 years later with no other issues: I noticed a pink smooth bump in the center of my WLE scar, very near original mel. Went to derm who said considering where it is we want to biopsy it but was "not concerned". After removing it she said there was no discoloration at the site after collecting the tissue. I am hoping "not concerned" means unlikely to be melanoma return.

Oh boy, here I go again, I am trying not to be afraid. Is this ever something other than melanoma? It didn't look like the previous but I know mel comes in all kinds of shapes and colors. I just got engaged to the most wonderful lady in the world and have several trips planned. Hoping I will get to see these through.

Has anyone had what looked like recurrence not be melanoma?

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Sdmotorcop's picture
Replies 1
Last reply 10/17/2019 - 8:44am
Replies by: Bubbles

Hello Folks,
I was diagnosed 3C in May and have been on Nivo since June. I’ve been dealing with a couple of side effects so I’m thinking the Nivo is working. I’ve been reading about how immunotherapy takes the brakes off of our immune therapy for life which gives our bodies the ability to search and destroy the Mel.

My question is this (I apologize if it has been asked or covered before)... since our immune system is running full blast, would this help the body if confronted with another type of cancer (ie, prostate, leukemia)?

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Michael2.0's picture
Replies 16
Last reply 10/19/2019 - 4:27am

Hello everyone,
I've been lurking here for a week or so and have finally got the nerve to post. Weird how little things like this just affirm what you already know, yet they are still difficult to admit to and process. I was dx with stage IIIB malignant melanoma in late Aug. I had the primary site excised (rt. calf) and had three lymph nodes removed from my inguinal area. One showed microscopic amounts of cancer. That and the ulceration of my primary tumor set me at stage IIIb.
The following week I received a skin graft for my leg and did a PET Scan and brain MRI. Thank God both were negative. Last Thurs I began Keytruda as an adjuvant therapy.
This has been a very difficult month or so but I feel good. Ive lost 18lbs and have cut all sugar and processed food from my diet.
I feel kind of lost honestly. This waiting game for recurrence seems like it is going to be excruciating.
Anyway I do derive comfort from listening to the success stories and hope beyond hope someday I might have a success story of my own. If any of my experience can help others then feel free to ask.

Aloha,
Michael

Aloha, Michael

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ScaredPartner's picture
Replies 5
Last reply 10/20/2019 - 12:59am
Replies by: EllieS, Bubbles, gopher38

Today was scan results day, and boy were we scared. My partner progressed after ipi/nivo (but only in the bones), And was switched to targeted about 10 months ago. Time has gone by so fast, and we know that this stuff seems to have an expiration date. In the last couple weeks he has had some major pain just below his knee in the bone. We were terrified the beast was back already.
Doctor came in to discuss results, and said everything looked great. All was stable, and brain Mets were gone.
We asked about the bone pain, and the doctor said “just how much have you been working out? You have a stress fracture!”
We laughed as the doctor tried to convince the addicted runner/cycler to just rest for a few weeks. Then questioned why the pain in elbows, and shoulders.
“You have arthritis. Congratulations, you’re getting old”
Now, at 42 we don’t really consider that old, but an old age diagnosis was exactly what we needed today.

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Baby_Girl's picture
Replies 3
Last reply 10/18/2019 - 1:23am

So my infusion of Opdivo was canceled due to high liver numbers (ALT and AST) . These numbers have fluctuated over the last several months but have never prevented me from getting an infusion. I also got my PET/CT scan results that day and everything looked good.
I was wondering if the radiation/dye or whatever they injected in me for the PET/CT scan could have made my liver numbers increase? I had the scan the afternoon before they didn’t my blood word and when I was supposed to get my Opdivo infusion.
Has this happened to anyone else before?
They scheduled me to come back in two weeks for bloodwork again and if my numbers were down then would continue with treatment.

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