Live from OSU
Back on the second floor of the James, with an IV in my right arm and bandage from the missed attempt on the left. Forget that- what is important is that my lab remains stellar -Hgb is 14.4. That is the first time that I have not been anemic in over a year, but I won't celebrate as it was in the 12s about a week ago, so I know it can go up and down.
I have been off low dose steroids for a few days now, but my neutrophils remain slightly high with my ANC being 9.6 (N: 1.8-7.7) pushing my WBC up to 15,000.
My absolute lymphocytes are 3.5 which is boringly normal and up a bit from last month (2.3).
Platelets are rock stable at a healthy 354,000 and retics is barely elevated at 1.6. Does that mean my marrow is being cleaned out and is responding nicely?
Blood chemistries are also good news. Kidney and liver function tests paint a happy picture. Uric acid is trouble free at 6.1. Only the LD (lactic dehydrogenase) is a smidgen high at 193 (upper end of normal is 190), up from 140 last month. Not worth mentioning and besides it could be from my sore muscles that are being poked and prodded now that I am going to PT to be stretched from here to wherever, seeing my trainer for some heavy duty rub downs, and exercising daily. It's working!
My immunoglobulin levels reveal my usual low IGA and IGM but even those are about as high as they have been in the last few years. IGG is normal thanks to monthly IVIG infusions. Thank you, donors, thank you.
No real change in my nodes. Less than one centimeter in the armpits and the tiny shot above my left clavicle is getting harder to fine. That's it for palpable nodes.
So I am under reacting to all the news, which is easy when everything is copacetic. No worries, mate.
After about two hours since arrival, my meds finally have been released. The three bottles of my magic elixir, ibrutinib were delivered and the first dose (three pills) for this cycle were dutifully swallowed. Even my last ofatumumab infusion in this trial is running.
Still need to be back in Columbus every 28 days until the end of my first year of the trial. They still haven't revised the protocol. Maybe they own airline stock? At the beginning of cycle thirteen next winter, I will enroll in the follow-up trial that only takes me back to OSU every three month, hopefully forever. I understand that I can remain in the study forever unless I progress.
My next set of CT scans is scheduled for October. That is only four months since the June imaging, so it seems too soon. Not sure what to do, but with my palpable nodes being so small and stable, it makes sense to know what's going on inside. Or maybe not.
No sighting on Dr. Byrd again. Hopefully next visit.
All in all, all is good back in Ohio.
Time for a vegan lunch and then a nap.
I have been off low dose steroids for a few days now, but my neutrophils remain slightly high with my ANC being 9.6 (N: 1.8-7.7) pushing my WBC up to 15,000.
My absolute lymphocytes are 3.5 which is boringly normal and up a bit from last month (2.3).
Platelets are rock stable at a healthy 354,000 and retics is barely elevated at 1.6. Does that mean my marrow is being cleaned out and is responding nicely?
Blood chemistries are also good news. Kidney and liver function tests paint a happy picture. Uric acid is trouble free at 6.1. Only the LD (lactic dehydrogenase) is a smidgen high at 193 (upper end of normal is 190), up from 140 last month. Not worth mentioning and besides it could be from my sore muscles that are being poked and prodded now that I am going to PT to be stretched from here to wherever, seeing my trainer for some heavy duty rub downs, and exercising daily. It's working!
My immunoglobulin levels reveal my usual low IGA and IGM but even those are about as high as they have been in the last few years. IGG is normal thanks to monthly IVIG infusions. Thank you, donors, thank you.
No real change in my nodes. Less than one centimeter in the armpits and the tiny shot above my left clavicle is getting harder to fine. That's it for palpable nodes.
So I am under reacting to all the news, which is easy when everything is copacetic. No worries, mate.
After about two hours since arrival, my meds finally have been released. The three bottles of my magic elixir, ibrutinib were delivered and the first dose (three pills) for this cycle were dutifully swallowed. Even my last ofatumumab infusion in this trial is running.
Still need to be back in Columbus every 28 days until the end of my first year of the trial. They still haven't revised the protocol. Maybe they own airline stock? At the beginning of cycle thirteen next winter, I will enroll in the follow-up trial that only takes me back to OSU every three month, hopefully forever. I understand that I can remain in the study forever unless I progress.
My next set of CT scans is scheduled for October. That is only four months since the June imaging, so it seems too soon. Not sure what to do, but with my palpable nodes being so small and stable, it makes sense to know what's going on inside. Or maybe not.
No sighting on Dr. Byrd again. Hopefully next visit.
All in all, all is good back in Ohio.
Time for a vegan lunch and then a nap.
Labels: Clinical Trial NCT01217749, ibrutinib, lab results, lactic dehydrogenase, neutrophils. ALC, OSU, under react
posted by Brian Koffman at
9:26 AM
3 Comments:
"No worries, mate," thinking of you. Alison.
Fantastic Brian (although underreacting for you) - I have had some bad news this week, 8 months after diagnosis - my ALCs took 6 months to double from 4.0 to 8,0 but only two months to double to 16.0 (still low but doubling
rare causing concern for my Dr and reflected in growing lymph nodes). My IVgH status came back unmutated and I'm off to get an opinion from a transplanter this week although doc leaning towards FCR or BR (given I'm SLL). Will redo FISH and see if I've picked up anything more than the del 6q I solely had last December (somewhere between trisonomy 12 and 11q in terms of prognosis). Quite scared now - but my sister is a match so transplant might be on the cards. Just wish I could wait for Ibrutinib (ironically if I've got the 17p deletion that might be an option in a clinical trial when it gets to Australia). Stay well. Best wishes Deborah in Melbourne
I'm glad you could get my last comment, Brian. Couldn't get the robot thingos right. Alison.
Post a Comment
Subscribe to Post Comments [Atom]
<< Home