Celeste - How are you and Pete?

[hart2hart]

Dear Celeste -

Pete and I think aboutcha you both all the time.
How is Pete doing? I see he is in a Trial ---at MSK---with Kemeny?
Please update when you feel up to it.

WE ALL LOVE YOU BOTH HERE!!! (BIGTIME!) Please let Pete know! Lots of hugs! xoxo


From Another Pete (repete!) and Julie too!
Stamford, CT

[pfCml73183]

Hi. Funny you should ask.
I am not too sure how this trial is going. I was just saying to Pete that I wish we could get some earlier feedback. There will be no CEA test and no images until week 8. Tomorrow starts week 4.
Rules are rules and we signed up for this.
We have been staying in NYC for 6 weeks now. Pete hasn't been up to traveling back and forth and he needs to be here every week.
I haven't posted much because I have been really down. The cancer has pretty much taken over in his peritoneum and is now full blown in his lungs. Dr K described it as webbing. Just walking a couple blocks makes him winded.
We can feel tumors in his abdomen and above his collarbone.
His CEA is very high too.
He has been hospitalized a few times for blockages now and we are fearful he is working on another.
Dr Segal is in charge of the trial he is in.
He truly is a fighter. He always amazes me. He is not ready to give up. His sword is always drawn!
Thank you for inquiring.
I hope you are doing well. Celeste

[CM35]

Celeste,I am glad to see an update on you and Pete. I so enjoyed meeting him last summer at MSK. I am only sorry things have been difficult for you both. It's a long road. I pray that this trial he is on turns things around. (If you aren't pray-ears, then positive juju and thoughts your way.). Hoping for some good days for you both. Cancer is a b!$-&. Please tell Pete I say hello.

Take care,
Colleen

[pfCml73183]

Thank you Colleen.
I will give Pete your message.
How are things going with you?
Celeste

[CM35]

Thank you for asking, Celeste. I am OK. Mostly, I feel like I am in no place to complain. I am dealing with ongoing peritoneal mets in my pelvis. I had one removed in December, just to have another one pop up about a month ago. I have been enjoying folfox and panitumumab, which I would not describe as a day at the beach, but it seems to be holding things back for the moment. Chemo has become hard on my counts, and finding the correct balance of dose and schedule has been a challenge. I am going to be having HIPEC in about a month, which of course is a double-edged sword. I realize how lucky I am that its an option, but still not looking forward to another surgery and recovery. Overall, though, I am good!

[pfCml73183]

That does NOT sound like a day at the beach at all. I hope it will do the trick though.
Are you doing the ADAPT at MSK under Dr K's care?

[pfCml73183]

Pete is back in hospital with ;suprise, another blockage.
He is worried about the effect this will have on his trial.
We found out last week that his BRAF mutation isn't the normal one. (600) it is 594 (?) and and is newly being studied.
Hell's bells. Can't anything be normal?
This Dr. also said most of the participants know if the trial drug is working by now. Pete has mixed feelings. His lungs seem better but, not his abdomen.
The good news is that he may be able to qualify for Zelboraf now, through his insurance, because it has been shown to work on this mutation. (wording?) We are appealing that.
We are thankful to perhaps have another option.

[jgall]

HI Celeste,

My DH was on that trial last year (Oct-Jan). Unfortunately he had progression on the trial, but he found it to be a much easier drug combo to tolerate. I hope your DH does better with it!

What is Zelboraf? I haven't heard of that one.

Julia

[hart2hart]

Hi Celeste -

I hope your Pete is feeling better everyday! I so admire your tenacity and loving ways!

We're rooting for you Celeste! Hugs to both of you!! LOTS OF THEM!!



Julie and Pete
Stamford, CT

[pfCml73183]

Thank you everyone for your kindness.
Pete is still in hospital with an ilius. He is sleeping all the time now.He is really uncomfortable. Just moving around is difficult for him.
Today we decided to start the process of looking into hospice. Our daughter is a social worker and said that her hospice connection told her that most people wait to long and don't get the full advantage of what they offer people at the end of their lives.
We are so in denial that we have nothing in order at this point. Maybe this will motivate us.
It is sad to get to this point.
Celeste

[pfCml73183]

Julia, Zelboraf is a chemo drug used for melanoma patients that have certain BRAF mutations.

[Maddielolo]

Thinking of you, Pete and your whole family...

[CM35]

Celeste, I am sorry you are at this point. Praying for your family as you make decisions, and choose your next steps. I can't imagine. I am also praying that Pete's blockage resolves so you can all be comfortable, and at home. Words seem inadequate, but know I am thinking of you.

[jgall]

Celeste - thanks for the info about that drug. I do recall it now, but my DH doesn't have the BRAF mutation.

I'm sorry about how things have progressed for you, I'm pretty sure we're right behind you. My strongest thoughts are with you.

Julia

[Icesk8tr]

Dear Celeste,
I don't even know how to respond to the latest news about Pete.
I continue to pray for you both.

Hugs,
Christine