Tuesday, January 8, 2013

Quick Turn Around: 12 hours at OSU and leaving hungry, tired, but with good news and my Ibrutinib .

I just realized that I traveled across the country through 3 time zones with stops at 2 different airports coming and going to spend exactly 12 hours from midnight to noon in Columbus. Ohio. In that short time I rented a car, slept (way too little), scraped snow off my windshield and drove on icy roads (memories of Montreal but not part of my California life), then at OSU had a large bore IV started (ouch) for my 2 CT scans with contrast and blood work, got some of the results (my blood counts and chemistries are all unexciting and in the normal ranges, and my innards are looking more like those of someone without CLL, but I am not quite there yet because although my lymph nodes continue to shrink overall, a few are still enlarged in my gut), had a brief check-up (no palpable nodes), visited a friend at OSU with complications of his CLL, picked up my magic PCI-32765, swallowed the first 3 battleship grey pills for this cycle, and rebooked my flight to get home earlier. What I didn't do was eat anything (no time after the hospital and I was prohibited before by the CT and drug protocols) or get any rest.

That is what home is for.

Overall a good trip with good news.

Back in 4 weeks for a bone marrow biopsy, but I am thinking of staying 2 night this time so I can rest and visit with my Columbus friends.

That visit will be the one year anniversary of my joining the trial and will mark my ninth months of getting up a 1/2 hour early everyday to take my ibrutinib on an empty stomach.

Time is a jet plane. Literally.

More crucially, that clinic visit will be the cue for my entry into the rollover continuation trial where I will be seen only seen every 12 weeks, but still get CT scans every 84 days, at least for the first 2 cycles.

I understand that every patient who has reached that landmark visit which essentially ends his or her participation in Clinical Trial NCT01217749 and with it, access to ibrutinib, has been offered the chance to stay on drug and has chosen to continue in the new trial.

That seems like one of the easiest choice that I will ever make.

What a difference a year makes.

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2 Comments:

Anonymous jcleri@aol.com said...

Fantastic news..........let's pray that the difference between next year and this year is just as great.....Total and complete healing.

Blessings,

Judy

January 9, 2013 at 9:42 AM  
Anonymous Anonymous said...

It may not be a fairy tale trip but it sounds pretty awesome to me. Hope you get some rest and thanks for posting.

January 12, 2013 at 2:07 AM  

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