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.

starting PD-1 Tracey FL

I am finally back on line with the new form of board.  Moms first treatment did not work so we are on to the new one PD-1.  Her last CT scan shows that things have doubled in size and number.  I cried for two days.   She seems so well but she has been stage lV since Feb.  Has anyone out there done the PD-1 trial? I would love to hear.

Tracey

Question:

I was just told I have a met to brain as well has my lungs and liver. They swithched the plan of attack to radiation for three days on my brain. Followed by Interleukin 2 in about a week. I'm worried and seeking answers, to feel hopeful. So my question is, has Interleukin 2 ever worked? For anyone? Any success stories you may have heard of?

start WBR on Mon

So far so good with the Temodar.  I've been on it for 2 or 3 days and so far no side effects.  I take it right before bed on an empty stomach (zofran as pre-med about half hour before!).

I've already done the simulation and stuff, so I am ready to start WBR on Mon. I'll do a 10 day course and then an MRI.

BRAF-GSK-Another Great Scan!

Hello everyone - I havent been on here since the new format.  Not sure I like it!!!  Just wanted to check in with everyone and let you know that my brother - on GSK Braf inhibitor - still showing shrinkage - with no progression.  He has been on GSK Braf - ihibitor for about 7 months.   If anyone out there wants further information - please feel free to email me.  This has been a miracle drug so far - his stage IV melanoma was progressing fast.

Best wishes and stay hopeful.

Mrs.Marilyn

(sister of brother Gary stage IV)

raditaion b/f surgery?

Has anyone had success with radiation before surgery?  The tumor on my butt/hip is fairly big (about the size of ping-pong ball) and has caused a lot of redness and swelling on the skin surface, so the idea so far is to do radiation to "sterilize" tissue around the tumor that may be impacted and to maybe shrink the tumor so that the surgery isn't as huge and also so that if there is any micro-involvement in the surrounding tissue, that is doesn't get pushed around and stuff with the reconstructive part of the surgery.  Does that make sense?  Or should I

Question for those who've had LND (groin)

My husband is 6 weeks into recovery from LND of the groin.  He still can't completely straighten his leg.  He says it feels like his tendon is too short (pulls from behind his knee up to his groin).  Is this normal?  Has anyone else experienced this?  If so about how long until things were back to "normal."

He also says he has a "big section" of the front side of his leg where he feels nothing.  Permanent nerve damage?  Get better over time?

Question for those who've had LND (groin)

My husband is 6 weeks into recovery from LND of the groin.  He still can't completely straighten his leg.  He says it feels like his tendon is too short (pulls from behind his knee up to his groin).  Is this normal?  Has anyone else experienced this?  If so about how long until things were back to "normal."

He also says he has a "big section" of the front side of his leg where he feels nothing.  Permanent nerve damage?  Get better over time?

Melanoma Initiating Cell/Stem Cell Identified

Well, I guess the good news is that not ALL melanoma cancer cells are cancer stem cells, as one recent study posited, or express the protein CD 271 ...... Now, if they can find or develop something which can target melanoma cells expressing this protein, how great would would that be ?  ..... I guess we should take heart in that the first step in defeating any foe is usually Sun Tzu's maxim "Know Your Enemy"....even though this particular enemy can look like Arnold in The Terminator at times.....Hawaii Bob, Stage IIA

 

Pages