Tuesday, July 5, 2011

Getting ready!!

So tomorrow is the big day!!!  Our first appointment is bright and early at 6:15!  Seriously already feel like crying just thinking about getting up early enough to get there on time!

Josh has a blood draw, bone marrow aspiration w/sedation, EKG, and a visit with the doctor.  So I'm fairly certain that will take ALL day, even though we are starting at the crack of dawn.

Hopefully he will get another prescription filled while we are there to restock his meds.  It is so strange to me but you have to keep the bottles for the trial and return them to the trial nurse.  Isn't that weird?  I snapped a pic of Josh's before we packed them up to go.  It is crazy to think that those few bottles of pills are what is keeping him alive!

And check out this other part - I think it is so funny that they treat it as though it is so very dangerous and you must dispose of properly.  So glad Josh is swallowing four of these daily! ;)  If we walk out with another bag of pills I will once again feel like we are stealing - I am still so amazed that they are giving them to us for free! 





And this is what the pills actually look like.  The NVR is for Novaris, the manufacturer.  And TKI is for tyrosine kinase inhibitor - the class of drug that Tasigna is. 






And the last thing we are returning is his medication diary, where he has recorded the time of every single pill he has taken over the last three months.  We keep it conveniently attached to the fridge!

Josh just got out of the shower since he won't be able to bathe for 2 days after his BMA and we're packing up the bag for the hospital right now.  We're feeling quite anxious about tomorrow - Josh mostly for the bone marrow test itself, and me mostly for the outcome.  We never got the situation with the nurses worked out about when we will get the results, so we're not even certain we will have anything to report tomorrow at all.  Josh's job allowed him to take a vacation day Thursday night, so we are pleased with that.  He didn't want to have to sit up in an uncomfortable chair all night with the pain he will have in his back from the tests.  That also allows us to meet with the doctors again on Friday if need be.

It seems that the way that they measure your success with the meds is through a test called a PCR.  If I am reading his test results correctly from the first test, he had 91.43% as his PCR results.  The goal is to get as close to 0% as possible.  Want to see why we are a bit confused?  Here is a copy of just the top quarter of this test result page....
REAL TIME BCR INTERP PB                          
BCR-ABL qRT-PCR:

Coexpression of b3a2 and b2a2 BCR-ABL fusion transcripts is detected by
real-time PCR.

The percentage of BCR-ABL to ABL transcripts is 91.43.

COMMENT: Quantitative real-time PCR analysis performed on RNA from this
sample for the BCR-ABL fusion transcript resulting from the t(9;22) in
leukemia. BCR-ABL and ABL transcript levels are detected simultaneously
and quantitative results expressed as the ratio of BCR-ABL to ABL levels.
This ratio may vary up to one-log because of methodological reasons.  As
of 8/2/07, the assay has shifted to a new platform.
And the font is half as large as the one here, and then there are about 40 more pages of test results from that same day.  See why we are confused?  I will be glad to see the doctor tomorrow and get to talk to someone about all this!

We'll post again tomorrow night after we have time to process everything that happens tomorrows.  Prayers are appreciated - especially for Josh to be calm for his procedure.  Thanks guys!

2 comments:

  1. Praying for the BIG day tomorrow. Love you guys and will keep praying throughout the day.

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  2. I have been thinking of you and praying for you today!

    ReplyDelete