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.

It's Cell Day!!

Somewhere upwards of 20 doctors just left the room, including the incredible Dr. Rosenberg. Dr. Yang, my attending, went over the process and what to expect from the cell transfer and the IL-2. This is it!!

The nurse last week suggested that I might want to put together a playlist to play as the cells infuse. So this is what I put together on Spotify (I just realized I should have included Marvin Gaye's "Let's Get It On."):

1. "Ride Of the Valkyrie," from "The Ring" -- Richard Wagner

2. "Wrecking Ball" -- Bruce Springsteen

Precancerous mole removal - need to understand the pathology report

I had two moles removed last November.  The doctor first looked at them and didn't even think they were moles.  They were on my back in a place I couldn't see then (in bra strap area) but because I said my husband noticed them and thought they were new she removed them (saying I really don't expect them to be anything).  So I was surprised when I got a call back saying one was precancerous and needed to go back for a further shave as she hadn't got it all the first time. I asked what time it would have been had it progressed and she said melanoma.

Pseudo Progression While on Nivo(Opdivo). Do you continue?

Hello again everyone.  Well, after seven months of clear scans and very minor side effects, I've got a new mutant to cut out.  My surgeon thinks it's fully resectable and it's less than two inches away from the edge of the WLE from my first surgery.

Post-hospitalization options for advanced melanoma patients

Hi everyone,

My father was diagnosed at the beginning of March with stage four melanoma with brain metastases. It's been a heartbreaking month, as you can imagine. He was admitted to the hospital pretty much the moment he was diagnosed, due to brain swelling and the need for immediate radiation treatment. He's also begun the targeted therapy treatment since he is BRAF positive.

Opdivo headache clean mri

On my 3rd treatment of Opdivo. After 5 days developed mild headache on right temple. Not crazy pain just dull pressure annoying, all day. It’s been 3-4 weeks of it. I’ve had an MRI and Blood test for headache drug related symptoms all negative. Anyone else have this or know what it could be? They said I have fluid in my sinus took antibiotics didn’t help. 

 

Thanks 3B diagnosed In Oct 2017

Do we finally give up?

My father in law has stage 4 melanoma. After numerous surgeries and clinical trials (targeted therapies and ipilumumab) over the past 2.5 years - he is being sent home tomorrow to NJ for hospice. The doctors at Sloan, UPenn, and Yale have told him there is nothing else they can do for him. His liver is too weak for anymore trials and the cancer is throughout his body. Should we just let him be comfortable at home his last weeks-months? Or does anyone believe he can still be treated? Please let me know.

Need some cheering up

Hi all, I haven't posted before but I'm a very avid reader of this forum. My boyfriend is in his mid-30s and was diagnosed with stage IV melanoma in early February with 3-4 brain metastases (they're not sure about the 4th yet - could just be a blood vessel - 1 was very large but the others are <1 cm) and some in his lungs, too. As far as we know there is no cancer anywhere else, although they're doing another full-body PET scan and MRI next week. He had a craniotomy for the largest brain met, then did WBR + SRS, and now he's about to start the Ipi/Nivo immunotherapy combo next week.

Lymph node biopsy

I have stage lV metastatic melanoma and have gotten Keytruda treatments for over a year. I now have 2 swollen  lymph nodes in my underarm. I am scheduled for a pet scan tomorrow and a biopsy in April. I'm curious what might be done about them. One has doubled and redoubled in size while taking treatments. I am not cancer free but a lot has disappeared and gotten smaller and is now stable except for the lymph nodes. I am new to this forum. Does anyone have experience with this scenario?

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