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.

what are peoples experience with DCIT?

I have had DCIT recommended to me by an oncologist. He said that after 2 doses he can tell whether it is taking effect or not.  Has anyone had this advice, or a good experience with DCIT?  The ipi would be the next thing, but it has come with a warning of drastic side effects to the bowels, anyone experience this?

Thanks for any help and experience.

 

Andrew

Remembering Glenda Davis......

Glenda.  A dear friend.  A fun person.  A true warrior.  One helluva classy lady.   I've missed her every single day, since she left us 4 years ago.  She's been joined by so many others in the last 4 years, I can't even count them all.  I know she's keeping them amused and up-to-date on the goings-on in Heaven! 

I love you my sweet, sweet Glenda.  I know I'll see you again someday....

~Lisa~

 

Brother spoke at GSK HQ on Friday!

Hi!

My brother Gary- who has been on GSK - BRAF 2118436 inhibitor at Sara Cannon - was asked by GSK to speak at their  Philiadelphia HQ - on Friday.  It was a worldwide teleconference - speaking regarding his 60% reduction in 9 months.  They gave him a tour- top secret - and all the researchers were so happy to meet a real live person with such success.

Lots of good things - happening at GSK - he is so happy!

Best of luck to all.

MrsMarilyn

Looking for dr or treament in Michigan or IN, OH, IL

We are in West Michigan we I am looking for a recommended physician or treatment center in the region.  It is for my father who states he is wanting to travel if that is what it takes.  He wants to fight the best possible fight.  He had an oncologist at Spectrum Health and we did go to U-M and they offered only radiation to the head for 2 weeks and then temedor.   Where's a good place to start trials?  Karmanos in Detroit?  We are open to suggestions as my dad has just started his fight with stage IV.  Please share your thoughts.  Thank you!

back from MD also responding to trial

Hey Everybody,

Just got back into town from my scheduled scans during Ipi/ temador trial. As Jim I was enrolled in the trial in August, we are on the same weeks. The scans showed an  aprox. 25% decrease in all lung nodules and the nodule on lower back has decreased by atleast  half.

I also feel so lucky to be responding to the treatment, but yet guilty because so many others are still working so hard to find something that works for them or the same trial and not responding. It makes me very humble to be so lucky, (why do I get to respond and not everyone else).

Stage IV's advice, not medical but mental.

Hi All,

My husband is Stage IV, but is on a trial that seems to be working... his next CT scan is this coming week. I can tell it's helping, his pain is less, and his energy is up.

But he's on a new drug combo that really has no statistics yet... it's a shot in the semi-dark, so it's hard for both of us to look forward since we don't know how long it will work or even if he is a partial or full responder.

Buddy has gone into Hospice

Hello All,

I just recieved a call from Buddy's wife Nancy.  After a month in John's Hopkins Buddy has entered hospice where he is resting comfortably.  Please send your thoughts and prayers to Buddy, Nancy and their family. 

Nancy posted here and at the old site frequently, recently the care of Buddy and the family orchards have required all of her time and energy. 

Confusion about findings on PET scan versus CT scan

Hi,

Background information, brother dx with melanoma from area on finger that was left untreated and undiagnosed for 9 months.  Had PET scan in June which lit up lymph nodes under same arm as finger and.  Finger was amputated, lymph nodes removed, one of 22 found positive, size 4.5 cm.  Very few of the nodes had normal color.

New to site: Stage 3a

Hi Everyone, 

I've been reading over the amazing posts. What support! I had a stage 3a diagnosis last spring, with removal of the tumor on my calf and two sentinel nodes which showed a couple of micrometasteses. I declined a full lymph node dissection on my leg and the interferon. 

Does anyone else have a similar diagnosis? I have semi annual liver panels and annual chest x-rays and so far so good. 

Thanks! 

Ann

What are some signs of Brain Mets?

Eric says that he is having problems with perifial vision.  I've noticed lately that he has been running into furniture and corners of the walls.  Yesterday when he came  home from work he had a gash and bump on his forehead.  He is a service manager at a goodyear and he said that a car was up on a lift and he ran into it.

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