Things are going fine here in transplant world. I'm just about bottomed out on my counts. My white cell count is 0.05 as of today. Hopefully I'll start to rebound within a couple of days, they say not likely before day 8 so that's still a few of days out. I'm mostly just feeling tired. I've been a little queasy over the past few days and haven't had much of an appetite, but overall not doing so bad. They've been giving me anti nausea meds which seem to be doing ok keeping things in check. They did admit to me today that the younger female patients tend to have the most nausea...I guess it's just as well they didn't mention it before! The trick now is to avoid getting sick between now and when my counts rebound!
We ran into another couple I remembered from my last trip today. They are an older couple from Lexington Kentucky. Seems things weren't going so smoothly since they arrived in town...insurance problems that derailed a vertebroplasty for him, A/C out at their rental, a dog back home that ate their grandson's Easter gifts, etc. Hopefully they get back on track for them quickly, because there is nothing worse than extra bullshit in the midst of all of this. I also learned that he's on the TT6 protocol. Now for those not in the know this wouldn't mean much of anything, but for patients down here we quickly get to know the numbers and the meaning behind them. There are two groups of myeloma patients here in Arkansas and we are segregated by the gene expression profiling test...low risk, and high risk. High risk patients respond more poorly to treatment, relapse faster, and just generally have a poorer prognosis. There are different protocols for the two groups and this is where the numbers come in. TT4 is for low risk patients, and TT5 and TT6 are for high risk patients. So just by hearing my fellow patient is in TT6 I know that he is one of the high risk patients. It always makes me sad to hear it, and I can't help thinking they are the "unlucky" ones. Then I think how odd it is to think that because we are all unlucky ones in this game...but the high risk patients face an even tougher road for sure.
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Happy Easter to you!! We are glad to hear things are going well. Sending lots of hugs to you!
ReplyDeleteReading your blog fills me with mixed emotions after your observation about who's lucky. I think I'M lucky to have 64 plus good years w/o a major illness or surgery... just a big nose and can't sing (ask your dad...) But then if all we ever had was great days, how would you know the difference without a bad day to compare it to?
ReplyDeleteEvery day you get is a chance to make it a good day. But I think you know that!!! Happy Easter!
Hi Jody,
ReplyDeleteTT5 & TT6 are not for High Risk patients only. TT6 (as I recall, it's been a while and you can ask the research nurses there) is for Low Risk patients who have been previously treated before getting to LR. TT4 is Low Risk "clean patients", not previously treated, but sent directly to Ark. Funny though, Dave's paperwork always said, "TT4 Like". He is LR and was previously treated with Thalid/Dex before coming to Ark. TT5 as I recall was the HR group.
Ark has to keep track of all of this for their research and paper presentations with regards to Total Therapy and whatever conclusions they draw. It's a massive data tracking they impressively do there.
Anyway, I hope that is helpful and good luck to you in your treatment and outcome Jody! Tell everyone there I said "hello"! I miss my Myeloma Buddies! As Jan Bertsche says, "they are my blessings of Myeloma."
Thanks for the comment Lori, I'll have to clear the details up with Dr. B next time I see him. According to the clinical trials info listed on the UAMS site TT5 is for previously untreated high risk, and TT6 is indeed for previously treated, but it specifies you must be high risk.
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