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June 16, 2014 at 11:00 pm #64567
Jonathan was out of the hospital and back home only to return with low potassium levels. Hoping and praying that they fix this and he gets his infusion this week.July 3, 2014 at 3:37 pm #64568 Jonathan,
I have been thinking about you and praying that you are doing well.
Since it has been awhile since you have given us an update, I am hoping you are just busy, enjoying your summer and not having any issues.
Take care my friend,
JamesJuly 3, 2014 at 8:30 pm #64569
Francoise told me the following: Jonathan’s surgery turned out to be major, with 2 blockages in the small intestine removed, and an i leostomy, which could be reversed at some point. There are still some tumors left, which hopefully will be taken care of by the anti-PD1. He is eating normal food and hopes to be released tomorrow or shortly thereafter. As Dr. Sznol said: “If the anti-PD1 is effective, the next 6 months will be up and down, but after that you may lead a normal life”. The up and down part may include more surgery.July 3, 2014 at 11:39 pm #64570 Catherine, thank you for the update on Jonathan. Hopefully, he will feel good enough to post his own update. Jonathan has such a way with words. I love reading his posts.
JamesJuly 17, 2014 at 7:04 pm #64571
Have you heard how Jonathan is doing after his surgery? How is his recuperation going? I am hoping that he is doing well and is still getting his pd1 infusions.
JamesJuly 18, 2014 at 6:29 pm #64572
I was happy to hear from Jonathan himself! He is slowly recovering from surgery, as you can imagine, abdominal surgery is tough! He is still getting the PD1 and suspects he is having a good response since the tumors aren’t “giving him any trouble” right now. So fingers crossed he’s home and recuperating nicely.July 18, 2014 at 7:12 pm #64573PhillyRedParticipant Thanks for the update. That is very good news. He has been through so much! Wishing him a speedy recovery now and success with the PD1 treatment.July 18, 2014 at 9:02 pm #64574JonathanParticipant Thanks, everyone – your continuing support means a lot. There are some down days when despair can creep in if I’m not watchful, and these notes help a lot at those moments in particular.
We’re just back from a check-up with the abdominal surgeon 1 week after release from jail (oops, I mean the hospital). He says I’m doing exceptionally well, even if I’m very impatient – the surgery was very extensive, as he removed almost a yard of small intestine in 3 pieces (2 total blockages). So full recovery from the surgery is going to take some time, I guess, and the general weakness from being in the hospital so long will take some months of physical therapy to overcome – but I can tell I’m already making progress. I can climb the stairs now, slowly, without a cane – better than last week. The fun part is being able to eat whatever I feel like – a wonderful surprise after being on a clear liquid diet (or sometimes nothing by mouth) for over a month. Apple juice never tasted better! And now it’s on to bacon and eggs for breakfast… Gotta pack in those calories to fight weight loss (30 pounds).
There are a couple of indicators that the Merck 3475 (anti-PD1) is having a positive effect (just had infusion number 4 on Tuesday), but my oncologist is putting off the first set of scans for another 6 weeks because, as he said, the tumors aren’t causing any major issues at present, and they did an abbreviated abdominal scan about 3 weeks ago that showed nothing of interest or importance. I also have a private tumor in my armpit that only I can feel, and right now, I’m finding it very hard to locate…So the scan will be very important in establishing my future prospects. I’m told that truly durable responses with extensive abdominal tumors often involve some subsequent but less extensive surgery for tumors that may still be growing, so we’ll see how good my response is (assuming I’ve got one). I really don’t want to face the possibility of more abdominal surgery anytime soon, I must say – it’s been the worst experience I’ve had.
I may have said this before, and you may all know this, but it has hit me many times during the past 3 months that pain and lack of hope are the two enemies, especially pain. When I have no pain, I can feel optimistic and focus on pulling myself together for a possible future of considerable duration and pleasure. On the contrary, when I’m in pain, hope fades very quickly into despair – a remarkable psychological shift that can happen in just a few minutes. This realization has clear consequences. For example, a nurse told me yesterday that it is well known that my local GP gives pain medication very begrudgingly to terminally ill, or very sick, patients (“a natural process” we all need to go through and all that b.s.). As a result, I’m now looking for a new doctor, because when that time comes, as it will sooner or later, I want my pain adequately managed without struggling philosophically with my doctor. You may want to reassure yourself on that account – it will not be your oncologist”s call.
JonathanJuly 19, 2014 at 2:14 am #64575Celeste MorrisParticipant
Way to hang, my friend!!! You are awesome. And next time…just click your heels!!! Glad you are continuing to improve, grow stronger, and make arrangements so that your needs are met…YOUR way. A good lesson for us all. Much love, CelesteJuly 19, 2014 at 2:47 am #64576BNP68Participant Great to hear from you Johnathan! So happy to hear you are starting to feel better and even happier to hear you may be having a good response to the PD-1. Best of luck and enjoy packing on a few extra pounds.
BrianJuly 19, 2014 at 11:47 am #64577
Thank you for the valuable advice Jonathan and thinking of others during your recovery. I wanted to take this opportunity to reemphasize what Jonathan mentioned: when you are in pain, it just brings you down! Pain management is something some docs aren’t good at and we have so many good things to use these days. Please look at our webinar on this topic: http://melanomainternational.org/webinar/2012/03/strategies-for-pain-management/#.U8paC_ldVSQ
This doctor is very expert at this topic and have a few books out too. No one should have pain!!July 19, 2014 at 2:54 pm #64578lindamgParticipant
Thank you for your update and I’m praying that the Merck anti-PD1 is the drug that works for you/
LindaJuly 20, 2014 at 12:24 am #64579
Happy to hear good new from you, especially about your armpit tumor.
It is your time my friend. MK3475 is going to help you see a bright future. You certainly deserve a break.
Please keep us posted in 6weeks. Will be looking for your post at the end of August.
Get stronger and enjoy the rest of your summer with Francoise.
Better days are coming !
JamesJuly 21, 2014 at 9:30 pm #64580StevenParticipant
Great to hear from you. You rock!
Your advice is so excellent. Even when healthy, pain can change our mood. Thank you for pointing it out.
StevenAugust 2, 2014 at 10:20 pm #64581bettinParticipant
good to hear from you- I got updates via Catherine- and I hope that the real PD1 works its deal for you. I am sorry what you are going through, wheelchairs and airports unfortunately sound too familiar…totally agree with you on jails, eh hospitals- food at home is just *so* much better.
I hope you have found someone good for the pain- what you describe also sounds too familiar for my liking. We were lucky that my sister is a pain therapist- hope you found someone like that by now!!
Wishing you all the best and thinking of you- let PD1 work its magic!!!!!
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