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.

A Rough Two Days

They told me that the first chemo agent I would be getting, cyclophosphmide, was goiing to be rough, and they weren't kidding! Add to that 48 hours of having to get up to pee every 2 hours, and you have a recipe for being miserable.

Today I'm feeling better and actually got out of bed. Staff here all tells me I'm doing a good job. So I soldier on in prepartion of getting my cells and the IL-2 that comes with them.

"To cure you they must kill you. The sword of Damocles hangs above your head." -- Lou Reed

But for today, it's basebsall!!

-Bill

Clear Scan

Friends;

My second scan showed NED! My wife and I are headed to San Diego Sunday. The NIVO continues to give me mild issues, but nothing of any great significance!

Ted

Recurrence after Stage 1 and LDH levels

Hi everyone,

I'm new to this community but not very new to melanoma.  I had a Stage 1 melanoma in my left calf that was removed via wide excision surgery in early 2010; nothing was done to my lymph nodes.  I have had regular derm. checkups (twice yearly, then yearly) since, and nothing has shown up.

Brain Mets after 3rd round IPI/Opnivo - clear MRI before this.

Hey all - 

Just wanted to do an update and ask for advice. My mom did her 3rd round of the combo infusion March 12th. She was battling low sodium so it took a couple weeks to get that treatment. After she started having migraines. We had an MRI yesterday that showed she had some brain tumors that we haven't had before. They seemed to pop up pretty quick, her MRI at the end of December was completely clear. Is this a response to the combo treatment or is this just a progression of the cancer? They are switching up medications but I haven't actually spoke with the Dr. yet. 

Ocular melanoma / CHRPE

To date, I have had three WLE for known cutaneous melanoma, all with clear margins. I was disturbed when my optometrist pointed out a "CHRPE", acronym for a congenital pigmented area on the retina, during a recent routine eye exam.

Prior to moving to Maine from Baltimore, my previous regular eye exams had been done by an opthamologist at the Johns Hopkins WIlmer Eye Institute; gievn the doctor's reputation, I believe he would have found this condition i a prior exam.

Flaking/Peeling Black Mole Please Help

Hi, I have a small black mole that appeared with a couple of other moles during puberty. A year ago, I noticed the mole felt a bit rough and when I rubbed my finger on it black skin flaked off. Ever since then, it'll occassionally do this. New black areas will grow and the mole will get rough/dry and the top layer will eventually peel off. What could be the cause of this? Is this a symptom of melanoma? I searched online and it says a flaking mole could be cancerous and now I'm freaking out

Where does it end?

I feel guilty posting, as I haven't been very consistent on the forum & would rather be encouraging others, instead of relating my own woes ... frankly, I don't know where else to go. Nobody seems to understand.

Recap: MDA in December, '17 ... lungs are resolved, yay! However, prostate (180 grams) & right kidney (4 cm complex tumor) likely both have cancer. See you, in June???

Opdivo Story lol

I never post on here, I've sat back silently for 1.5 years. Stage 4, on Opdivo for a year, after BRAF combo initially. Anyway I see some people here quarreling, life is too short for that! I wanted to give you all a good laugh so here's my story:

I guess the bosses listen to me though ;>) LMD Trial

IT Nivo combined with IV Nivo at MDA

https://clinicaltrials.gov/ct2/show/NCT03025256?cond=leptomeningeal&rank=6

Maybe I know more than I don't know.

If I were 35 years younger and knew what I do now maybe an education in the medical field would have been my choice.

 

Again my broken record reccomendation is get to MDA.

Rob

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