My Introduction
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Tagged: Ascending Cholangitis, Cured, Hope, immunotherapy, Keytruda, NED, SIBO
- This topic has 407 replies, 40 voices, and was last updated 2 years, 2 months ago by Jjet65.
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August 1, 2016 at 9:58 pm #80518middlesister1Moderator
Matt-
Thank you for the update; you are inspirational! All of the water sports while fatigued? It makes me very guilty that I’m sitting on the couch watching TV rather than getting out and being active.
Beautiful picture!
Catherine
August 1, 2016 at 8:32 pm #80517lainySpectatorWell, Matt, I have 2 things to say: Keep up the great work and I know it is tough work and #2, Those are 2 good looking Reidy’s!
August 1, 2016 at 8:29 pm #80516darlaSpectatorThanks for the update Matt. Good to hear and love the picture of you and Dylan.
Hope to keep getting good reports from you. Keep smiling.Hugs,
DarlaAugust 1, 2016 at 7:49 pm #80515iowagirlMemberMatt, it’s so great to hear that that CA 19-9 is behaving itself, but even greater has been seeing pictures of you and your family this summer……all of you. ..esp you….enjoying life and time together. That’s what this is all about. Hope the Keytruda keeps working so well….and that you can adjust to the slower life of being more tired than you are use to being.
I may have some further Keytruda questions for you in the future….will know more either later today or tomorrow.
Julie T.
August 1, 2016 at 7:27 pm #80514mattreidySpectatorTIme for a little update.
I’ve now had a total of 12 Keytruda infusions and my CA 19-9 remains in the normal range. I’ll repeat that CA 19-9 has been a spot-on marker for me over the past 2.5+ years so until results from my next scans in September 2016, I am still NED.
I’ve got all the “normal” issues for someone who’s had multiple abdominal surgeries, liver resection, gall bladder removal, chemo, radiation, etc. Adhesions, twinges, messed up digestion and bowels, but I’m just happy to be here and accept all that as my not-so-new normal these days, I continue to need to take Creon (pancreatic enzymes) with food because my pancreatic exocrine system was destroyed a year ago when I underwent a failed attempt at curative IMRT radiation for my recurrence.
The Keytruda initially had no side effects, but after about six months, I find I’m fatigued constantly. It doesn’t go away with sleep or rest. I get plenty of sleep, thanks to my wife, but it’s always there. I try to ignore it as best I can.
I’ve gotten back out on the water for some water sports like skiing, wake surfing, and windsurfing. Things I wasn’t sure I’d ever get back to. I’m happy to say that my abdomen was not a problem.
Here’s a little pic of my youngest, Dylan, and I along with a chart of my CA 19-9 values since starting Keytruda in Oct 2015.
My best to all reading this!
-Matt
June 15, 2016 at 9:35 pm #80505darlaSpectatorMatt,
Hope you enjoyed your vacation. Glad to hear that things are going well for you.
Hugs,
DarlaJune 15, 2016 at 8:42 pm #80504marionsModeratorMatt…..happy to hear of the normal test results and thrilled to know that nothing interrupted your vacation. Have you mentioned your findings i.e. alcohol consumption translating to elevated Liver Function Test results to the treating physician?
Hugs,
MarionJune 15, 2016 at 2:26 pm #80503sherriMemberYea! Matt, I was hoping to read good news this time. I’m heading to Anderson on the 27th and Susan goes to NY on July 5th. Hopefully we will all get good news and celebrate over lunch. Continue to enjoy your vacations.
SherriJune 13, 2016 at 3:45 pm #80502lainySpectatorYea! Matt! Great news and so happy you took a vacation. Years ago I went on BP but they never seemed to work right. About 16 months ago went off and my BP has been more normal than ever before. Go know! JUST SO HAPPY YOU ARE DOING WELL.
June 13, 2016 at 3:30 pm #80501mattreidySpectatorThank you all for the well wishes!
This update is a bit late…
LFTs were high on a Wed as stated previously. I went in the following Fri and AST/ALT were down a bit but Alk Phos was up a bit. Feeling a bit better about those results, we left for a week of vacation as planned.
After getting home, 8 days later, I went in for labs Mon morning and everything was back to normal without any intervention.
I’m beginning to think the spikes aren’t the Keytruda but perhaps linked to drinking alcohol in moderation. I was never a heavy drinker, maybe 4 drinks a month… after diagnosis I stopped almost completely, but on occasion I’ll have a drink and these spikes seem to happen after that. Maybe a coincidence, maybe not. I’ve now stopped ALL alcohol and will see… I won’t miss it a bit.
I’m scheduled for Keytruda #10 this Wed.
-Matt
May 29, 2016 at 9:58 am #80500middlesister1ModeratorMatt,
I hope levels stabilize soon and wishing you continued success .
CatherineMay 27, 2016 at 11:40 pm #80499debnorcalModeratorMatt, I am sorry to hear about your recent elevated LFT’s. Hopefully, just a temporary blip that will resolve quickly. Hope you are feeling well otherwise. Mike and I think of you often!
Debbie
May 27, 2016 at 12:39 pm #80498mattreidySpectatorWent in for Keytruda infusion #10 on May 25, 2016 and had labs before the infusion, as usual. My liver function tests are high
Alk Phos – 167
ALT – 108
AST – 145This is the second time this has happened on Keytruda. The first time was in January, after about 3 infusions.
This time, the numbers aren’t as bad as they were in January, but still not good. It indicates that the Keytruda is likely causing my immune system to attack not just the cancer, but my liver too.
Skipping treatment today and will come back for labs in two days to see if they are getting better or worse. If they are worse, I will start prednisone (steroids) again to knock back my immune system for a bit.
April 21, 2016 at 3:18 pm #80496sherriMemberGreat news Matt !!!
Let’s get with Suasn and have lunch soon to celebrate.
Sherri
April 21, 2016 at 2:25 am #80495darlaSpectatorGreat news Matt. So happy for you.
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