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  • Post
    • October 25, 2018 at 4:29 pm
    mrsaxde
    Participant

      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

    Viewing 9 reply threads
    • Replies
        • October 25, 2018 at 7:22 pm
        VinceMart
        Participant

          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

            • October 25, 2018 at 10:55 pm
            mrsaxde
            Participant

              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

              • October 28, 2018 at 11:31 am
              VinceMart
              Participant

                Thanks Bill,  I really appreciate it.  Sent you an email with subject line stating from vinc e nih

                • October 29, 2018 at 9:37 pm
                mrsaxde
                Participant

                  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

                • October 25, 2018 at 8:19 pm
                BrianP
                Participant

                  Bill,

                  Thanks for the update.  So glad things seem to be trending in positive directions on all fronts.  Hope the good news continues.  I think you might be on to something with the pumpkin spiced PD-1s.

                  Brian

                  • October 26, 2018 at 2:51 am
                  lkb
                  Participant

                    Pumpkin spice? Sure beats the dirty-penny taste I sometimes get from Nivo. Wishing you more encouraging scans and much enjoyment of your returning appetite.

                    • October 26, 2018 at 1:06 pm
                    ed williams
                    Participant

                      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

                      • October 26, 2018 at 1:46 pm
                      Bubbles
                      Participant

                        That's great, Bill.  Glad you found the "cure" your nausea and wt loss!!!  Keep on trucking!  Love, c

                        • October 27, 2018 at 12:57 pm
                        Mat
                        Participant

                          Great news Bill—stable disease is a good place to be.

                          • October 27, 2018 at 1:01 pm
                          Momofjake
                          Participant

                            Bill,

                            All good news! Thanks for the update. Always good to hear how you are doing and even better when things are going wel. Happy you completed the TIL trial and praying for lasting results!!!!

                            Kerri

                            • October 27, 2018 at 6:06 pm
                            MelanomaMike
                            Participant
                              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
                                mrsaxde
                                Participant

                                  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

                                • October 27, 2018 at 7:31 pm
                                Mark_DC
                                Participant

                                  Hi Bill

                                  thanks for posting again, have been following how you are

                                  am glad that you are doing well (stable is good) and hope the next scans will be pretty good too and show some further improvement would be amazing

                                  best wishes Mark

                                  • October 30, 2018 at 11:20 am
                                  bjeans
                                  Participant

                                    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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