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May 30, 2014 at 12:27 pm #22003
Jonathan just had his second PD1 infusion in Jacksonville. He’s jet setting these days (Nashville every few weeks previously) and now Jacksonville. Hoping and praying for a good response to the second infusion! Please send your thoughts his way. (and to Francoise too!)May 30, 2014 at 3:12 pm #64553rochelleParticipant Catherine,
Thanks for the update on Jonathan…Hi Jonathan and Francoise!!! Safe travels and be well!!
MarthaMay 30, 2014 at 3:39 pm #64554Dick_KParticipant
Best of luck. (By the way, there are better ways to accumulate air miles.)
DickMay 30, 2014 at 3:51 pm #64555jamesaParticipant
Thank you for the update on Jonathan.
How is his overall health since getting out of the hospital?
I hope that PD1 side effects are mild for him. Jonathan has been through enough.
Jonathan, I am praying that PD1 is going to bring you to a NED status.
Hang in there my friend,
JamesMay 30, 2014 at 9:28 pm #64556AnonymousGuest
Good luck Jonathan!!
How do you feel?
JeffMay 31, 2014 at 6:01 pm #64557JonathanParticipant
Thanks for all the support – truth is, I need it right now. With Catherine’s help, I did get on the Merck anti-PD1 3 weeks ago (second infusion this past Thursday) at the Mayo Clinic in Jacksonville, and a scan that was done about a week after the first infusion was interpreted by my oncologist, Mario Sznol, as already showing signs of a good response (one tumor shrank by 2 or 3 mm and looks necrotic, no signs of other progression). Let’s hope that continues!
The problem is that it’s late – if the anti-PD1 works, it will have been in the nick of time, since I’ve got a lot of small bowel tumors that are causing blockages and vomiting issues – this really started being a problem in January. This finally led to me being hospitalized at Yale for 18 days, and I ended up with a tube to my stomach for venting anything I take by mouth (only clear liquids) and only being “fed” by IV at night (TPN for the knowledgeable). I’m very weak as a result of the long hospitalization, but now pain free since release on Tuesday, and with no more blockages or vomiting episodes, and just beginning to begin recovery, which the nurses etc estimate will take a month (who knows when I will ever eat normally, however). There has been some talk about surgery to take out the worst tumors, but I think the right decision is not to go there.
While the Mayo Clinic in Jacksonville is a fine and impressive institution, I hope never to have to go there again (Yale certainly should have the EAP going in 3 more weeks!!) – this trip the past 2 days was extremely difficult, but made possible by wheelchairs at the airports and lots of love and caring from Francoise. So now we’re home, recuperating – just had our first haircuts in a looong time.
JonathanJune 1, 2014 at 10:04 pm #64558AnnieoParticipant
Best wishes to you Jonathan,
AnneJune 1, 2014 at 11:36 pm #64559jamesaParticipant
Thank you so much for your update.
I am so sorry to hear what you are going through. I am glad you did not “sugar coat” it. It is important that we all know you need our support and prayers.
I hope you continue to feel better and start getting your infusions at Yale. Travel must be grueling for you even though you are a “jet setter”
( Nashville, Jacksonville)
As always, my prayers and positive thoughts are with you.
Stay well my friend,
JamesJune 2, 2014 at 2:47 pm #64560Nancy DowdingParticipant
Jonathan, I’m so sorry to hear all you are going through. Wishing you a speedy recovery and LOTS MORE shrinkage. Hang in there!
Nan in NebraskaJune 2, 2014 at 10:46 pm #64561StevenParticipant
Best wishes for quick healing. Here’s to Merck and Yale doing their parts!
StevenJune 12, 2014 at 3:10 pm #64562
Jonathan has again hit some rough spots and was in the hospital for care. Hopefully he’s home now and preparing to travel for this third infusion of Pd1. Please keep him in your thoughts and prayers.June 12, 2014 at 3:35 pm #64563FrancoiseParticipant Unfortunately, Jonathan is still in the hospital. He was supposed to be released today, but we are not sure at the moment.
The good news is that Yale is now open for the EAP trial (although it is already full), and he is scheduled to get his 3rd infusion there next Thursday rather than in Florida.
Thank you all for your kind thoughts.
Françoise (Jonathan’s wife)June 12, 2014 at 3:46 pm #64564rochelleParticipant
Thinking of you both…please tell Jonathan I was asking for him…
MarthaJune 12, 2014 at 6:06 pm #64565
Oh that is great news Francoise! I’m so happy you can stay put for the infusion and not travel to Jacksonville. I hope so much it revs up the immune system and beats the melanoma back. Take good care of yourself too! My best to Jonathan.June 15, 2014 at 7:21 pm #64566msue5Participant Jonathan I hope you are doing better. After inserting hundreds of NG tubes during my nursing carrer I recently had the tables turned and had 1 after my surgery 3 wks ago. I was asleep when they inserted it but like any good nurse/ bad patient I pulled it out in recovery room and had it reinserted while awake. Now I know why all those patients had tears running down their face during the insertion of one. Francoise you are an amazing caretaker as is my husband. He often says how helpless he feels. Caretakers are vastly under appreciated and in my opinion have the most difficult job. Hope things are going better and the Anti PD 1 does it’s magic.
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