Don Lee Update and PD1

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5/15/2014 11:17am
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Replies: 4

It's been awhile since I've posted, and not necessarily because "no news is good news." Don's Stage IV Diagnosis was only 16 months ago, out of nowhere and no primary, and what a ride it's been. After brain mets, cyberknife, brain surgery, SRS, and other various complications, his response to Zelboraf was questionable and short-lived (he is V600R, a relatively rare form of the BRAF mutation). Then he had a positive response to IPI according to his doctor (completed last August), but since then has had multiple growths in his abdominal area. Surgery in October and then another surgery last month to remove pelvic-area masses, two rounds of radiation in between for other mets. And these are just the highlights. He's down at least 75 pounds (he could have afforded losing maybe 30 of those 75 pounds) and is quite weak.

He, like so many, has been waiting for the PD1, always missing qualifying for a trial for one reason or another. We were informed yesterday that the PD1 is now available at Mass General (where he is treated) through the EAP program. The only requirement this time is that he cannot start the PD1 until 28 days after his last surgery. We have 1 1/2 weeks more to wait.

In the meantime, his doctor has started him on the Taflinar/MEK combo. Since Don did have something of a response to the Zelboraf about a year ago, his doctors felt this might help in the short-term. First dose was last night. Incidentally, some of you may remember that we had to stage an all-out campaign to get the Zelboraf approved, since he was V600R and not V600E. It took us months. This time, the Taflinar/MEK was also denied, but it only took a week for MGH to appeal it. So I hope this is good news for others who may be BRAF-postive but not with the V600E.

Our granddaughter, Cecilia, is already 5 months old and is quite the charmer! We are really looking forward to a wonderful summer with her.

I continue to be inspired and kept hopeful by most of the people and posts on this forum. My warmest thoughts are with all the Melanoma Warriors and their families. This is quite a war that I never thought we would be waging, but the knowledge and hope gleaned from this website helps keep us focused and positive.

Janet Lee

BrianP - (5/15/2014 - 6:25pm)

Janet,

So sorry to hear about the rough time Don has been having.  I hope Don has a quick response to the PD1.  You and Don's fighting spirit and determination are inspiring others here just as much as you have been inspired by others.

Brian

jonakeefe - (5/17/2014 - 11:24pm)

Janet and Don

Congratulations on the pd1 being available where Don is being treated. My name is Alex, I have stage 4 metastatic melanoma. I'm going on a year now with the pd1 anti body. Treatments are going good with some very awesome results. I'm no pro on the treatments but I've heard good things about it. I'm excited for your guys that hopefully Don will be getting the treatments soon as well. Best of luck with everything,I hope treatments will start for Don soon!!

Jme - (5/16/2014 - 12:35am)

Do you mind me asking --who is your doctor at Mass General?

jenny

Janet Lee - (5/20/2014 - 3:26pm)

Jenny,

Don sees Dr. Keith Flaherty at MGH.

Janet