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.

Keytruda - Adrenal Insufficiency

Hi all - just wondered if those of you who experienced adrenal insufficiency as a side effect of Keytruda ever considered taking a stress dose of steroids in conjunction with the infusion to counter the potential of adrenal insufficieny.

Might go to ER tommorrow..

Hi Family, boy, another day of no appetite, i cant even eat Saltines for cryin out loud, its been atleast 5 or more days since my last normal meal, i gotta have them check me out, ive "muscled it" through long enough & nothings gettin better, i went out & got me the THC/CBD oil, the bottle/dropper type it did take care of my body pains but didnt help my hunger "surprisingly"...im so weak, and of course my lack of appetite could be from my tumors in my lungs, not nessesarily from the Yervoy & Opdivo...i need a lil' TLC from the team, get me back on track, i cant handle the nausea

New and scared

Hi. I had a small itchy mole removed last week via scrape biopsy. To my doctor, and my, surprise it came back melanoma. Now a week later I am scheduled for a wide excision of the area and a sentinel node biopsy scheduled for this Friday. Three months ago I lost a friend to Melanoma, she did not get scans yearly as she was supposed to, and I am scared to death. My path report so far only says a Clark’s of at least IV and a depth of at least 1.0. The scrape did not grab a clean margin I suppose?

Recurrence -- wait-and-see or Opdivo?

Hi – I’ve been browsing this board for a while, so it’s probably time to come forward and say hello!

Pardon me if my lingo is not quite proper…  I was diagnosed with stage IIIc metastatic melanoma (T3cN1aMx) in February 2014 at age 38. The tumor on my back was removed, and later, so was a huge patch of skin. I underwent a sentinel lymph node biopsy under my right arm, which wound up being positive for melanoma. I soon had the remaining lymph nodes in the area removed -- 2 out of 12 of which contained melanoma.

We kicked the Beast!!

Had my monthly oncologist visit this am. He said my 5th petscan shows all the tumors are shrank, the latest new one is 'non measurable!"

Just need to vent!

Today, I had a conversation with a friend about what was going on with my husband. I don't understand why people don't know what to say, just say I'm sorry, it sucks anything but you need to get your shit together because your husband is going to die! Wow. Needless to say I will not be speaking with this person anymore. She doesn't know anything! She doesn't know about immunotherapy, or the experience and expertise of my husband's doctors. Of course when she said this to me I just broke down, it is only now that I am thinking of all the things I could have said.

My current ipi/nivo update

Hi Family, boy am i messed up, as i told you, i started the combo ipi/nivo last Friday {5/11/18} and now on day 10 days later the nausea is worse {now with vomiting} my apitite is completly gone, if it wernt for my wife making me drink Ensures, for one, it gave me something to throw up {excuse the visual}, two, it put some much needed nutrients in me. I think my last meal that i realy could eat was days ago, 2 maybe 3 days ago??...Iv had real bad headaches, not constant, just when i lean down, a throbbing type pain...

Question for Opdivo Patients

Hi all! I just had my 6th Opdivo treatment and it was the worst one yet.  The fatigue has gotten worse each time. After this last one, I slept for 26 hours, got up and ate, and then slept for 9 more. Is that typical? Does it keep getting worse? I keep hoping it will even out and I will adjust at least a little bit, but so far it has just gotten worse each time! I’m having it every other week and don’t want to go to monthly in case it’s worse. Is there any hope in sight??

When Knee Pain is More Than Expected....

Hey friends! Hope you're enjoying the weekend so far. 

I wanted to update about my knees. All throughout the 2 years of treatment I had pretty crappy joint pain. It was not new, I had dealt with some level of joint pain prior to any immunotherapy, but it definitely got worse after infusions, especially my knees. 

Removed from Keytruda trial due to side effects

54 year old male with Stage 3C  I recognize that the side effects of treatment piece has been addressed many times here but still felt that it may be beneficial to some for me to describe what happened to me with only 3 of 18 Keytruda treatments remaining.  Started Keytruda in Apr 2017 to treat Stage 3C Melanoma.  This was after two surgeries and 10 weeks of daily radiation treatment.  For the first six months, everything was pretty good.

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