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- This topic has 14 replies, 11 voices, and was last updated 5 years, 1 month ago by
bjeans.
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- October 25, 2018 at 4:29 pm
Hi everybody!
Historically I haven't posted as regularly as some here, but I know there are a few of you who have been following my progress. I haven't been on in a while and I thought I'd check in with an update.
There's not much going on with me at the moment. My last scans at NIH, as I related a little over a month ago, were encouraging. Brain mets were resolving after radiation, the lymph nodes in my chest were stable, and two other non-target lesions were stable. Most importantly there was nothing new. My next scans are scheduled for a month from now.
My biggest problem since being discharged from the hospital post TIL trial has been nausea and appetite. I was down about 25 pounds after treatment, and in the past 3 months or so I have lost another 25. I needed to lose a few pounds, 25-30, but this was a little much. A month ago I saw my PCP and he cut my blood pressure medicine and metformin doses in half. He pondered stopping the metformin entirely but decided not to. My last A1C was 5.9%. Not great but not bad, either.
After trying several things, at the beginning of last week I decided to stop taking metformin. Within 24 hours my appetite had begun to rebound. Now, after a week and a half there's no more nausea and my appetite has largely returned to normal.
So that's what's up with me. I hope everyone is enjoying their fall. I hear some cancer centers are offering pumpkin spice Opdivo and Keytruda for the season. 😉
-Bill
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- October 25, 2018 at 7:22 pm
HI Bill,
Glad you are feeling better. I am currently trying to get in to the NIH trail and have an initial appointment next week. I was wondering if you would mind if I emailed you and asked some questions regarding the timeline for your treament. I looked over your posts and see it was approx 3 months from start to finish but had a few specific questions on timing if you would be willing to provide. I am trying to be proactive for preparing for what I will be able to do based on recovery time frame, etc.
Thanks and glad to hear your are stable and feeling better.
Vince
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- October 25, 2018 at 10:55 pm
Hi Vince. I'd be glad to share anything I can about my experience at NIH. Because of all the spam on this board I don't want to put my main email out there, but you can email me at [email protected] and I'll respond from my main address.
-Bill
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- October 29, 2018 at 9:37 pm
Hi Vince, I discovered only this morning that after I forwarded your email from my gmail account to my regular account and answered you…I had actually sent my answer to my gmail account. You should have it now. Let me know if you didn't get it.
-Bill
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- October 26, 2018 at 1:06 pm
Hi Bill, glad to hear things are good!!! Not sure that I want to try your weight loss program!!! I really think you are on to something with the flavour idea, one for every season!!! Best Wishes!!!Ed
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- October 27, 2018 at 6:06 pm
Hello to you Bill, we may have responded to eachother way back when i first started here late last year/early this year (im still a Newbie here at MRF! HAHA) but anyways, good to hear your stable & posting your current situation. As far as your Apetite is concerned, has your team ever considered Megace? aka Magestrol? Im soooo goo goo gaga over it because it once SAVED my Life after a bout (a 12 day bout) of NO APPETITE what-so-ever 6 days after my first Yervoy & Opdivo infusion. Within 48hrs or less (4 table spoons of it) i was eating again! I lost about 20lbs or so, actually needed that 20 to come off but, not that way! Haha..look into it, i call it a God Send..take care brother..-
- October 29, 2018 at 9:39 pm
Mike, my wife, who is an RN, brought up Megace with me a couple of weeks ago, but that was before I stopped taking metformin and saw a great deal of improvement in my appetite. So I'm hoping we have things under control. It's good to hear that Megace does the job if I wind up needing it!
-Bill
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- October 30, 2018 at 11:20 am
Hi Bill – so glad you checked back in and are doing better. No pumpkin spice Opdivo with a side order of Ipi at my husband’s center, but the institution it’s part offers autumnal acupuncture, which he’s doing for some help with a gut issue. The NIH notes a bunch of side effects it can help with, and it can’t hurt, plus our insurance covers it. (And it worked wonders for our dog’s hurt shoulder.)
Beth
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