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.

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.  

Low sodium/lung metastasis question (Bubbles?)

Hi all (and Celeste in particular :) ):

Mole regressed/lightened

Hello guys
3 years ago I had a mole lightening. It lightened so much that it turned completely white. I didn't biopsy and didn't even care. I've read in the internet and read that it would probably be a benign regression. It wasn't suspicious before it lightened. First one half started to regress and then the other one. Should I be concerned about it or should I just stop thinking about it. It doesn't look suspicious now.

One step closer to TIL trial

(Sorry for the duplicate post. I accidentally posted this anonymously and didn't notice it until it was up.)

I went to NIH yesterday for the TIL trial screening. Before I started the process two nurses outlined how things were going to go during the day. They told me that after the tests and an exam by my clinical fellow I would meet again with her and with Dr. Sherry, the attending physician. "We won't be able to give you a definite answer today, but you'll have a good idea about whether or not you'll get it."

One step closer to TIL trial

I went to NIH yesterday for the TIL trial screening. Before I started the process two nurses outlined how things were going to go during the day. They told me that after the tests and an exam by my clinical fellow I would meet again with her and with Dr. Sherry, the attending physician. "We won't be able to give you a definite answer today, but you'll have a good idea about whether or not you'll get it."

New AJCC Staging

Hi Guys/Gals,

 

Is everyone still posting with 2017 Stage III subgroups?

They just changed 1/1/2018.

There are now four Stage III subgroups.

Makes me so confused!

 

Thank you for your time.

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