HGB - 11.1 (was 14.1 prior to txt). The low end of normal is 11.6, so this seems like a very quick drop for just 2 wks, but maybe it's normal??
HCT - 33 (was 40)...again, low normal is 34, so I'm on the very edge on this one already.
RBC - 3.7 (was 4.5). Low normal is 4.1
WBC - 3.45 (was 6.19). Low normal is 3.80
Neutrophil - 1.45 (was 3.41). Low normal is 1.96
My viral load went from 10.8 million to 1.5 million during the first 2 weeks of treatment. Next thursday they'll do the 4 wk testing and that is what I really want to see. I don't really know if this is a good drop, average or not that good????
Can anyone tell me what you think of these numbers? What are the 'too low/alarming' numbers during treatment? How low can we go before it's dangerous and might need the rescue drugs (procrit for red blood cells and epogen for white blood cells, or something like that)? I'm so happy that Schering has agreed to pay for them as needed as I heard they are extremely expensive...Someone mentioned $3k per shot - don't know if that is in the U.S. or the U.K. but still....man!???? Ugh - maybe I'll level out instead on continuing to spiral???
The nurse who gave me the numbers (Margee) told me that it was very important to NOT over exert myself with these numbers....to take it easy and rest. Now I know why I've been feeling so incredibly wiped out, I guess ;)
But, still...all in all, I don't really 'feel bad'...just really tired, so it's still very doable. LOL - I guess having the awful nausea and headache was a blessing in disguise 'cause now I've got that feeling to compare this one to :)
Oh, and I had a pretty nasty run-in with a potato peeler 2 days ago (cut it all the way to midway my fingernail and it bled like the Dickens!), but amazingly it is healing very quickly, so I thought that a very good sign, right?
I've been a little concerned reading reports on the forum about how they're now finding that the virus can be undetectable (following txt) for YEARS and then CRAP! resurface and begin replicating all over again. That is so discouraging :( It all made me wonder if the percentages of success are really accurate then? I mean how long did they follow these people to get those percentages....seems to me the ones I read about mentioned only 1 year or maybe 2. It seems some people are relasping after a longer time than these studies? With the genotype 1, we're only going in w/ a 40% chance, or there abouts. What does this all do to that success rate??? How low is it really??? When will they figure this %^& OUT??
And then there is that post on the UK forum about this particular study I'm involved in. Apparently the person didn't respond and they've told her that the protease inhibitor has made the virus mutate... and now it's even more resistant to further treatment. There IS no treatment she can do at this time that would be successful :( This is all very worrisome :(
If I am undetectable at 6 months of the combo txt, then I'll just continue the course (but now it seems it can resurface up to several years...so you live in that limbo for quite a while, even with an undetectable status...you are not home-free :( However, if the virus IS still detected at 6 months, they want to add in the protease inhibitor to the mix for another 6 months. It all makes me wonder what the right course for me should be...what decisions to make.
13 comments:
Hi Denise. Your #'s did dip quickly but it's to early to tell if they are going to keep going down. The next bloods will tell the tale. Your VL drop is good. Hope fully you'll hit the 2 log drop at 4 weeks which will be very encouraging moving forward.
I was told that SP will allow but not pay for rescue drugs. The procrit goes about $600.00 a shot and you need to take it every 2 weeks. Both UC and Starwitch were/are on it so they can tell you all about it. Congrats on the 1 log drop, you're on your way!
Thanks TerryLee - I'm gonna be watching those numbers closer than white on rice (hmmm, or brown on rice?? :)...
Yep, good news abt Schering changing their original plan and now agreeing to pay for the rescue drugs, huh?! Apparently, it's due to the early responses they're getting back on this study. They've only just agreed to pay since the 2 new arms were added and the study adjusted.
I don't quite understand the 'log drops'...feeling quite brain foggy - can you explain how you decifer them? thx, buddy! Will be doing shot #4 in a little while - going to send in more troops!!! :)
You guys enjoy the w/e in SF! Hugs to you & Magda!
Divide VL by 10=1 log drop as in 10 mill to 1 mill
Divide new VL(1 mill) by 10=100,000 for a 2 log total drop.
10,000 would=3 log drop
1,000 would=4 log drop
100 would =5 log drop
10 would =6 log drop/UND
thanks, terrylee - that clears it up for me - i get it NOW :) oxoxoxo, d
If you hit 100,000 next time out you'll have a 2 log drop in 4 weeks. Super responders go undetectable at 4 weeks and have a 90% chance at SVR. They are few. You want to be und at 12 weeks to have a chance at SVR. But, we have a golden parachute in that we are able to get the study drug if we are still detecable at 24 weeks......It's all good
So much math involved in hepatitis treatmet! If I knew I was going to get hepatitis, I would have tried harder in high school math class, not stopped taking math classes after 10th grade.
Easier if you just knock 2 zeros off the original figure!
LOL- Thanks, carol, EASY is a very good thing these days :) xoxoxo
Hope you are feeling better. I think about you every day. We Can Do This!!
Hi swampMom,
welcome to the world of Hep C Blogging.
I find it's a great way to get your thoughts and feelings out, my blog is a load of old nonsense but it makes me feel better.
Wishing you all the best
Lau
Elizabeth Anne and Lau - so nice to see you guys here. I read both your blogs regularly (and lau, you need an update as much as I do :)
Fellow blues lover (lau) and plant/animal lover (EA) - thanks for your support guys - it's coming right back at you!, xoxo
D
Please, please, try to come to the thing in the UK next September - just tell your daughter it's "Brittish Disneyworld." I'd be willing to wear a Minnie Mouse headband to convince her!
MYS LOL - mickey mouse ears, huh? Oh, believe me....a bug is being put in their ears - big time!! XXX
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