August 1, 2016 at 7:49 pm #80515iowagirlMember
Matt, 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 #80514
TIme 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!
-MattJune 15, 2016 at 9:35 pm #80505darlaParticipant
Hope you enjoyed your vacation. Glad to hear that things are going well for you.
DarlaJune 15, 2016 at 8:42 pm #80504marionsModerator
Matt…..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?
MarionJune 15, 2016 at 2:26 pm #80503sherriMember
Yea! 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 #80502lainyParticipant
Yea! 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 #80501
Thank 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.
-MattMay 29, 2016 at 9:58 am #80500middlesister1Moderator
I hope levels stabilize soon and wishing you continued success .
CatherineMay 27, 2016 at 11:40 pm #80499debnorcalModerator
Matt, 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!
DebbieMay 27, 2016 at 12:39 pm #80498
Went 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 – 145
This 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 #80496sherriMember
Great news Matt !!!
Let’s get with Suasn and have lunch soon to celebrate.
SherriApril 21, 2016 at 2:25 am #80495darlaParticipant
Great news Matt. So happy for you.April 20, 2016 at 11:30 pm #80494iowagirlMember
Wow Matt….. way to go…..outstanding! This is just wonderful news to hear right now.
Julie T.April 20, 2016 at 10:18 pm #80493middlesister1Moderator
This made my day – such absolutely wonderful news. My husband just came into the den and asked why I was crying and I was able to tell him they’re happy tears- so very thrilled for you and your family.
CatherineApril 20, 2016 at 7:05 pm #80492lainyParticipant
Matt, this is astounding news! I am so happy for you! Keytruda holds the key for you to unlock the door to living and life! ENJOY
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