OK kids: sorry about the long silence, but nothing drastic, life-threatening or otherwise out-of-the-ordinary has happened over the last month. There was a minor alarm when my complaint about intermittent abdominal pains (more like liver aches, ribavirin-correlated) coincided with slightly increased lipase levels and my doctor thought that I could have interferon-induced pancreatitis (it happens, but rarely). Anyway, that was not my case, but now I know that my lipase seems to run about 4 points above reference point. That's all.
Anyway: Last Saturday I took my last shot of interferon--painful as always. Last night I ate my last little blue ribavirin pill--nasty as always. I AM DONE WITH THE TREATMENT! (And not a day too soon!) BUST OPEN THE BOTTLES OF BOOZE! :)
So here is the current state of play. On the POSITIVE side of the balance sheet: I guess that the viral levels are still undetectable (almost 100% certainty of that) but I will not know for sure if I have been cured until 6 months from now. The virus may still be lurking below detectability threshold, but it is quite unlikely considering that I was an early responder: if the little bastard had mutated from under the treatment, we probably would have seen the resurgence by 12 weeks. So considering my history, I would say that my chances of being cured are somewhere over 95% or so.
On the NEGATIVE and NASTY side of the balance sheet:
A lot, actually, but supposedly it all shall pass.
1.I am weak as a kitten. The last two weeks were actually quite nasty: I was falling asleep all over and generally had problems moving and thinking. I am ridiculously glad that I did not have to do the whole 48 week shebang: I can see why people take medical leaves of absence from work at this point and spend the next 24 weeks in bed. Not for me, luckily!!!
2.My blood is still all sorts of fucked up, with strong anemia (hemoglobin at 10.1 last two times I did labwork) and suppressed red and white blood cells, leading to fatigue, difficulty concentrating and oodles of little skin infections. Last batch of tests were done on Friday and I will not know the results for a couple of days but I can assume that they are essentially the same and will remain that way for another few weeks.
3.I lost about two thirds of my hair, and still come up with a big clump two-three times a day. Shedding like a dog in the summer, essentially, This is interferon-related and now that I am off it it'll grow back soon. But considering that I'd started with two years' worth of a chevelure, what is left right now is pitiful and sad.
4.Over the last couple of weeks I'd started developing a second rash. This one is likely ribavirin-related; it is in the same places as the first one, but more diffuse and itches less. Now that I am done it should improve rapidly.
So in short, I still feel quite crappy and this will last for a little while, at least. BUT IT IS OVER. There is no way to go but up!
Today me and my honey will go out to have a good fancy exotic meal...with beer!!! And I have several ciders stashed away as well as a bottle of Viking Blod mead and will partake a bit of each tonight. I will report on improvements in my attitude as they happen. Especially my cognitive function: I have stacks of literature on climate physics, macroeconomics and mathematical ecology that I simply could NOT process for some time now due to cognitive side-effects. Hopefully, the old brain will kick back into gear soon! I am also planning on learning Yiddish so I can complain about, well, everything, in a language properly designed for that. Also, I should be able to start exercising to get rid of the fat accumulated over the last 6 months and to regain lost muscle mass. And no more high-fat diet!!! Cheers!
Showing posts with label alopecia. Show all posts
Showing posts with label alopecia. Show all posts
Sunday, August 12, 2012
Liftoff!
Labels:
alopecia,
beer,
blood,
bloodwork,
cider,
decrepitude,
final,
results,
side-effects,
treatment
Location:
Woodstock, Portland, OR, USA
Sunday, July 8, 2012
On the 19th week of treatment, my dear meds gave to me...
...a whole lot more of the same: mild nausea, abdominal aches (liver region), skin problems of all sorts, etc. A new development, however, is a pain in the ass (if my head is an ass): ALOPECIA.
I had started losing a bit of hair halfway through treatment but the process has accelerated now. I lose a handful each time I take a shower, and the top of my head has some rather silly-looking bald streaks by now. Apparently, this is due to interferon, which affects hair follicles. Also, it is supposed to grow back when the treatment is over (unlike hair loss due to cancer chemotherapy, which is largely irreversible), so unless I shave what I have left off completely, a couple of months after the treatment I should have a natural feathered do, multilayered!
I am almost at the point where I can write objectively about incivek--being able to separate its side-effects, now gone, from those of the other two meds. Soon! But, in a bit of good news, my hemoglobin is up to the point where my blood can actually leave stains. A month ago or so, my bloodstains washed out without a trace in laundry; not any more. (That was the time when my rashes bled a lot...and before then, when my nosebleeds were haunting me as well).
Of course, currently I am not doing much of anything but taking my shots and eating my ribavirin twice a day, and keeping my fingers crossed that viral levels will still be undetectable on Aug 10th. Chances are good; general success rate for the therapy is something like 78%, but that includes non-responders, and those who have missed their meds repeatedly, etc. I would like to see statistics that show success rate for those like me who were diligent about their meds and whose viral loads were undetectable at both 4 and 12 weeks--that is, a Bayesian estimate, adjusted for known conditions. Of course, I cannot find any information of this sort.
And, an article I'd found, dating from Apr 25th, said that Vertex were at the time in the middle of Phase 2B testing for incivek and Hepatitis C-1 (which is what I have). No wonder I didn;t have to pay for it: I was, after all, a guinea pig, although not one of the brave Phase 1 testers.
I had started losing a bit of hair halfway through treatment but the process has accelerated now. I lose a handful each time I take a shower, and the top of my head has some rather silly-looking bald streaks by now. Apparently, this is due to interferon, which affects hair follicles. Also, it is supposed to grow back when the treatment is over (unlike hair loss due to cancer chemotherapy, which is largely irreversible), so unless I shave what I have left off completely, a couple of months after the treatment I should have a natural feathered do, multilayered!
I am almost at the point where I can write objectively about incivek--being able to separate its side-effects, now gone, from those of the other two meds. Soon! But, in a bit of good news, my hemoglobin is up to the point where my blood can actually leave stains. A month ago or so, my bloodstains washed out without a trace in laundry; not any more. (That was the time when my rashes bled a lot...and before then, when my nosebleeds were haunting me as well).
Of course, currently I am not doing much of anything but taking my shots and eating my ribavirin twice a day, and keeping my fingers crossed that viral levels will still be undetectable on Aug 10th. Chances are good; general success rate for the therapy is something like 78%, but that includes non-responders, and those who have missed their meds repeatedly, etc. I would like to see statistics that show success rate for those like me who were diligent about their meds and whose viral loads were undetectable at both 4 and 12 weeks--that is, a Bayesian estimate, adjusted for known conditions. Of course, I cannot find any information of this sort.
And, an article I'd found, dating from Apr 25th, said that Vertex were at the time in the middle of Phase 2B testing for incivek and Hepatitis C-1 (which is what I have). No wonder I didn;t have to pay for it: I was, after all, a guinea pig, although not one of the brave Phase 1 testers.
Labels:
alopecia,
blood,
incivek,
side-effects
Location:
Woodstock, Portland, OR, USA
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