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.

back with another question re: WE closures

First, let me preface this with: I know this is a sort of ridiculous question. I know there are much more pressing questions on this board. But as this is all brand-new to me, I wasn't sure whom else to ask. So..

Checkin'In with Ya's

Hi Family, sorry its been awhile since ive written but, to give ya the latest im feeling pretrty good lately for awhile there i had VERY low energy and didnt do crap all day and this started actually after my 2nd dose {Pembro}..i was gettin scared like, is this how its gunna be? then i did my 3rd dose & within a week it was like a snap of the finger!

TIL Trial at NIH -- I'M IN!!!

I went to Johns Hopkins this morning for a follow up appointment, and Dr. Sharfman wanted to know what they told me at NIH. I related how Dr. Sherry said that he had to consult with their endocrine team about my thyroid issues. Dr. Sharfman said, "Those are minor issues. I don't think they'll prevent you from getting in."

On my way home my clinical fellow, Dr. Shindorf, called to tell me they're taking me into the TIL trial. I go for surgery in early February.

Thank You!

I just want to thank all the posters and repliers (sp?) on here because reading relevant posts and replies is really helping me tonight as I await the results (won't get them until after the holiday) from two biopsied moles that have been changing, and one with a new skin-colored growth about an inch away from it. I'm suspicious (but realize this may be paranoia)  that things might be moving through my blood stream.

Emotional Roller Coaster

The past 3 months have been an emotional roller coaster to say the least. After having a plan in tack, I was supposed to start tomorrow on my clinical trial, Nivo/Ipi. Got the word today from my Oncologist at Mayo Clinic that the drug company that had my tissue, needed more, due to the fact there were dead cells. There were dead cells, because my tissue samples sat in their lab over the holidays with no-one there testing them. After a long talk with my Oncologist we came up with Plan B. Being treated with Nivo every 2 weeks. I am very stressed to say the least.

DVT clot in leg

Hi My wife was diagnosed in August 2017 with a large nodular tumor on her shoulder/arm stage IIIB in August might actually be a III C now with the new staging guidelines that went into effect. Her tumor was fully resected with clear margins. One SLN came back microscopic positive. She then had all her nodes taken out on that side of 37 nodes only one more was microscopically positive. Started clinical trial on 11-16-2017 with opdivo every 2 weeks + yervoy every fourth infusion. PET/CT scan and Brain MRI clear in August except for a tiny 3mm nodule in one lung that ct saw.

Subcutaneous Mets question! Worried

Has anyone had, or heard of, a subq met on the back of the hand? I have 2 small hard bumps. My primary and recurrence were on leg/groin. Thanks in advance for any insight. This worry had got to stop!

Just an update - not the best, not the worse

Well - it’s a new year and just had new surgery yesterday.  While recovery from my lymph node removal 5 months ago has been good and still no demonstrable side effects from Keytruda, my PET CT just after Thanksgiving showed a small spot (confirmed by needle biopsy) just next to my original sentinel node biopsy site and just outside the surgical margins from the dissection.  While usually not recommended so soon after a surgery, my docs decided an excision of this area could have additional benefit for me.

Stage IV: Annual scans back clean - still NED

My annual January scans (CAP CT and Brain MRI) just came back clean.  NED still - since early 2009, IPI responder after 5 doses in total of 10mg/kg.  Full history online for those interested.

I continue to check in on this bulletin board, respond to posts when/if my experience may help someone and never, ever forget how meaningful and supportive many regulars on this board were back when I needed it the most.   

Prayers and good vibes to all in the fight.  Hang in there!

Rocco

Stage IV in 2005, ipi responder (MDX trial) in 2009 and NED ever since.  

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