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March 7, 2014 at 1:42 am #21855StevenParticipant
It has been a while since Jonathan posted. Does anyone know how he is doing?March 8, 2014 at 12:09 am #63748JonathanParticipant Hi Steven,
Thanks for the interest. Truth is, I’m still doing pretty well on this ADC chemo. I haven’t posted in a while because of various reasons, first off because I didn’t know how well I was really doing, and second because I was still quite anemic, and doing a lot of lying around. We also went off to Florida last week to escape the ice and snow here, which was nice.
Just had a new set of scans on Tuesday, and although earlier scans had suggested (to Francoise and me, anyway) that some tumors might possibly be starting to grow again or break out, that’s not the case – if anything, there’s some sign of new shrinkage now, 8 months into this treatment – so that was a great relief. It is true that I’m still losing blood from somewhere, most probably my small intestines, but because of the tumor shrinkage/stability, they’re not about to consider taking me off this drug or doing something drastic like surgery. The plan is to continue to give me transfusions as required (3 units on Wednesday) and iron/hemoglobin boosters (feraheme plus erythroppoietin, like Lance Armstrong…). As the doc said, my bleeding is “acting up”, and they will just treat it symptomatically.
Anyway, right now, I’m feeling a good bit better (after the transfusions), and we’re enjoying the week-end with my daughter, son-in-law, and 1 year old granddaughter. So life is good.
Hope you are well,
JonathanMarch 8, 2014 at 12:21 am #63749StevenParticipant
So happy to hear you are well.
I am feeling fine. I have had 2 gamma knife’s and am now on Braf/Mek. A week and a halk in and no side effects so far. I’m sending good vibes to you from NY daily.
StevenMarch 8, 2014 at 5:51 pm #63750
It is always a relief for me when you post good news. I think about how you & Francoise are doing often and keep you in my prayers.
I know that you probably have been thinking about the recent news regarding PD1 approval, perhaps even in 2014. When I saw these articles, I immediately thought of you because you got “ripped off” by Curetech.
Any thoughts on what you would do if PD1 becomes available to you while still responding to ADC?
Take care my friend,
JamesMarch 10, 2014 at 11:27 pm #63751
Who knew my post above would come to fruition.
Are you going to stay on ADC or get into Merck pd1 EAP.
In either case, it is nice to have choices!
Stay Well my Friend,
JamesMarch 10, 2014 at 11:43 pm #63752JonathanParticipant
Thanks, guys – isn’t this a hopeful day?? I never thought the expanded access would come so fast, and it certainly seems clear I won’t be excluded on the basis of the Curetech fiasco.
As you say, James, now I’ve got to make some decisions about going to anti-PD1 or staying on the ADC. I’ll certainly be talking to Drs. Infante and Sznol about that, but my strong guess from their earlier remarks is that they’ll advise me to stay on the ADC as long as I’m not developing nasty clinical symptoms or clearly progressing (and keeping anti-PD1 as a very viable “plan B”. After all, the Merck anti-PD1 “only” has a monotherapy response rate of – what – 40% to 60%, depending on what article you read…What I’m dealing with right now is a) peripheral neuropathy (which I can’t really tell is getting worse or better) and b) the anemia, which everyone is watching. But I’m gonna be talking to Infante tomorrow about all this in my usual Nashville Tuesdays…
Glad to hear you are doing well after the gamma knife, Steven – scary but remarkably manageable.
JonathanApril 5, 2014 at 12:01 am #63753
Catherine posted that the “first expanded access PD1 program has opened” and I immediately thought of you and others. It is a great day for so many melanoma warriors.
Jonathan, how are you doing? I hope your adverse effects on ADC and anemia are better. It must be a great feeling to know that you can get Merck PD1 if you want to.
Stay well my friend. I pray for you & Francoise everyday. I also think of Patti everyday and pray for her family.
JamesApril 5, 2014 at 2:13 am #63754Shirley ZParticipant
I was thinking about you today and decided to check the forums. You were the first post I saw when I checked stage IV. So happy you are doing well.
It sounds like you are enjoying being a grandpa. Nothing better!
As always, I wish you the best.
Shirley ZApril 5, 2014 at 12:00 pm #63755Catherine PooleKeymaster
Two people I want to hear from! Shirley and Jonathan! How are you both doing?April 5, 2014 at 3:17 pm #63756Catherine PooleKeymaster Heard from Jonathan, he’s hit a few bumps in the road but on the fence between PD1 and ADC. He is busy playing with his grand baby!April 7, 2014 at 1:26 am #63757Shirley ZParticipant Hi Catherine,
I’m doing ok. Not much has changed since we last spoke. I’m hoping the start of spring will help get me through the slump.
Just spent a week with 2 of the grandkids. It was wonderful…. but we all came down with a nasty flu virus. I am blaming it on Chuckie Cheese. So many little kids running around and lots of germs. I almost didn’t take them but hey its so much fun for them I hate to say no.
Hope you are enjoying your grandson.
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