With 22 days of incivek left (riba/interferon will continue for 12 more weeks), here is a breakdown of my average 24-hour period. Conclusions first: it is the general distraction and inability to think and concentrate that bug me perhaps the most. I have never been able to use a basic astronomy text as a sleep-aid; today I can barely comprehend a paragraph after reading it three times. Pulpy fantasy is about the only thing I can read, and even that gets a bit blurry. THESE EFFECTS HAD BETTER STOP QUICKLY ONCE THE TREATMENT IS OVER!!!
Anyway, this is how a day goes:
0900 750 mg incivek
0900-1230 or so; flushed skin, mildly dyspeptic, burning thirst, general fatigue
1230-1330 symptoms subside; feeling almost normal
1330 drowsiness sets in
1600 or so drowsiness dissipates; almost normal again, just in time for...
1700 750 mg incivek + 600 mg ribavirin. 1st riba of the day!!!!
1715 side effects begin
1715-2030 or so: like being beaten about the head and the torso with a baseball bat, in slow motion. The pain is tolerable only because it is stretched ove ra period of 3.5 hours. Nausea as well, but mild. (At its worst early in the week, after interferon shot, and gets better throughout, to become almost tolerable by Friday...in time for the next shot).
2030-2200 almost normal
2200-0030 a bit manic--and drowsy at the same time. Cognitive impairment, massive itching.
0100 750 mg incivek + 600 mg ribavirin
0115 hopefully, get to sleep by then because the beatings begin again althought they are not quite as nasty the second time around.
0600 wake up, feeling almost human and aware, but soon after that a paradoxical 'drowsy insomnia" settles in. Brain too sluggish to get anything complex done, but unable to sleep most of the time. And so it comes to...
0900 and the cycle begins anew.
Note: Saturday night, adding insult to injury, I get 180 mcg of interferon stuck into my belly. So far, with a couple of exceptions, direct side-effects of this one have been minor compared to the other two, but a week-long cycle aggravating the others' effects is emerging--see above.
I am not complaining; in fact I am endlessly fascinated by the interactions of the cycles of the three poisons that I am consuming, and their effects. The rashes on my elbows (primarily) hold infinite wonder. It is a challenge to my powers of reasoning to separate the "incivek pain" component from a "ribavirin" one; and to distinguish between three different kinds of nausea. von Masoch would be proud of me!
Saturday, April 28, 2012
Wednesday, April 25, 2012
Books of Blood, 8 weeks edition
Eight weeks into the incivek treatment and my anemia is kicking in! WBC/RBC/hemoglobin/hematocrit counts are dropping, although not horrendously low. Liver enzymes are hovering at normal (AST) and slightly above normal (ALT--actually went up 3 points, but that is likely a statistical fluke). The troubling parts are other signs of anemia: slight aniso- and poikilocytosis; and, potentially scary, slight toxic granulation and the presence of vacuolated neutrophils--which could indicate massive bacterial blood infection but most likely are yet another side effect of the damn drug. Yes, my immune system is compromised right now--funny,, considering that some of the meds I am taking are actually immune system boosters--but only in a very narrow way. In any case, since my doctor is not pulling me in to stick me onto an antibiotic regime, I suspect this is all within acceptable limits. Or perhaps they will pull me in today! :)
More on rashes: interestingly, they are apparently fundamentally allergic, and are triggered by overproduction of eosophils. It is funny that my drug cocktail suppresses the production of some blood cells while increasing that of others(and the chances of abnormal ones!). Still, only 3.5 weeks to go on incivek--after that things should get better. If my anemia keeps on getting worse, perhaps they will reduce my ribavirin dosage.
Speaking of ribavirin, reading a batch of monographs I find out that nobody really knows how it works! There are several postulated mechanisms, but none confirmed. The fact that is DOES work is not in doubt--for some diseases, like those nasty hemorrhagic fevers, it often gives the patient the only chance for survival--but it does so in mysterious ways. (As opposed to incivek, the action of which is quite precise--and the side effects, much more diffuse and general).
More on rashes: interestingly, they are apparently fundamentally allergic, and are triggered by overproduction of eosophils. It is funny that my drug cocktail suppresses the production of some blood cells while increasing that of others(and the chances of abnormal ones!). Still, only 3.5 weeks to go on incivek--after that things should get better. If my anemia keeps on getting worse, perhaps they will reduce my ribavirin dosage.
Speaking of ribavirin, reading a batch of monographs I find out that nobody really knows how it works! There are several postulated mechanisms, but none confirmed. The fact that is DOES work is not in doubt--for some diseases, like those nasty hemorrhagic fevers, it often gives the patient the only chance for survival--but it does so in mysterious ways. (As opposed to incivek, the action of which is quite precise--and the side effects, much more diffuse and general).
Sunday, April 22, 2012
Latest developments: weekly report
The 9th interferon shot seems to have gone without a hitch and no unpleasant side effects. Could I have accidentally hit a muscle last week? Weird. Also, I seem to feel better in general--as long as I get plenty of rest. Did bloodwork on Friday to test for platelets/blood cell counts and since I did not receive a panicked call from any of my doctors, I assume that their levels are not in the immediately deadly range, and that they have stabilized--or perhaps even gotten better. Which is good, considering that I will be making the appointment for my minor nasal surgery on Monday--I really do NOT want to get a platelet transfusion on top of everything else.
And everything else includes at least one minor but uncomfortable development: my immune system is becoming more compromised and almost every cut, minor abrasion or pimple on my body becomes rapidly infected and difficult to take care of (with low platelets, it takes them forever and a day to heal, thereby increasing the chance of infection even further). Have to be more careful. I get paper cuts every day and used to not pay any attention to them--but now they are as likely as not to stay open for a week and turn all red and nasty. Lots of hydrogen peroxide and mupirocin ointment on everything!
The rashes are not getting much worse. In the two weeks since they first appeared, I have developed quite a few little patches that seem to come and go, with several major ones. The two biggest ones are, weirdly, on my elbows. These are not going away--at least not until the incivek treatment is over, in four more weeks. Smaller ones on my shoulders and lower back, but those are just small collections of skin-coloured bumps as opposed to the elbows, which are red and blistery.
Finally, I have not said it before, but I am developing a total hatred of most "alternative" medicine pushers--for this particular disease, specifically. It is mildly despicable to attempt to cash in on people's suffering by offering them "complementary" treatments and playing on their fears and ignorance--and those treatments are often quite expensive. It is thoroughly an asshole thing to imply, as many sites I have seen do, that the virus does not have anything to do with the disease itself (similar to HIV denial) and that mainstream medical approach does not work at all, exhorting people to reject it and instead use some ill-defined Chinese or some such treatment as not even a SUPPLEMENT but a SUBSTITUTE. I would lock those fuckers up and literally throw away the key. They claim that the pharmaceutical establishment is only making money off us poor peons; leaving the dubious scientific reasoning of their claims aside, I must note that their "treatments" are quite expensive (herbal supplements are not cheap, even!) and, for comparison's sake, my incivek (about $4000 dollars a month in real cost) does not cost me ANYTHING. As in $0: my insurance and financial aid from the drug company are covering ALL of it. (In some later post I really SHOULD rant at the scumbag charlatans who are pushing alterna-garbage on people--and I will!)
Oh, and a general note on insurance. If I may be so bold as to complain...:) In a real society, where my insurance was not tied to my job, I would certainly consider taking a medical leave of absence: the side-effects are gnarly enough to qualify me for being "sick" for the next 4 months, anyway (and I hope they don't get any worse). Of course, I cannot do that because I would lose my insurance--and be unable to pay for my treatments then, even with 70% discount that I have secured in case of such a happening. 30% of $6000 a month is still $1800--hard to do when one is not working...
And everything else includes at least one minor but uncomfortable development: my immune system is becoming more compromised and almost every cut, minor abrasion or pimple on my body becomes rapidly infected and difficult to take care of (with low platelets, it takes them forever and a day to heal, thereby increasing the chance of infection even further). Have to be more careful. I get paper cuts every day and used to not pay any attention to them--but now they are as likely as not to stay open for a week and turn all red and nasty. Lots of hydrogen peroxide and mupirocin ointment on everything!
The rashes are not getting much worse. In the two weeks since they first appeared, I have developed quite a few little patches that seem to come and go, with several major ones. The two biggest ones are, weirdly, on my elbows. These are not going away--at least not until the incivek treatment is over, in four more weeks. Smaller ones on my shoulders and lower back, but those are just small collections of skin-coloured bumps as opposed to the elbows, which are red and blistery.
Finally, I have not said it before, but I am developing a total hatred of most "alternative" medicine pushers--for this particular disease, specifically. It is mildly despicable to attempt to cash in on people's suffering by offering them "complementary" treatments and playing on their fears and ignorance--and those treatments are often quite expensive. It is thoroughly an asshole thing to imply, as many sites I have seen do, that the virus does not have anything to do with the disease itself (similar to HIV denial) and that mainstream medical approach does not work at all, exhorting people to reject it and instead use some ill-defined Chinese or some such treatment as not even a SUPPLEMENT but a SUBSTITUTE. I would lock those fuckers up and literally throw away the key. They claim that the pharmaceutical establishment is only making money off us poor peons; leaving the dubious scientific reasoning of their claims aside, I must note that their "treatments" are quite expensive (herbal supplements are not cheap, even!) and, for comparison's sake, my incivek (about $4000 dollars a month in real cost) does not cost me ANYTHING. As in $0: my insurance and financial aid from the drug company are covering ALL of it. (In some later post I really SHOULD rant at the scumbag charlatans who are pushing alterna-garbage on people--and I will!)
Oh, and a general note on insurance. If I may be so bold as to complain...:) In a real society, where my insurance was not tied to my job, I would certainly consider taking a medical leave of absence: the side-effects are gnarly enough to qualify me for being "sick" for the next 4 months, anyway (and I hope they don't get any worse). Of course, I cannot do that because I would lose my insurance--and be unable to pay for my treatments then, even with 70% discount that I have secured in case of such a happening. 30% of $6000 a month is still $1800--hard to do when one is not working...
Tuesday, April 17, 2012
Nose news
Went to see an ENT doctor today for my nosebleeds. He thinks that I have what appears to be a pyogenic granuloma (and a wiki article with more detail) in there, that has to be removed both to solve my bleeding problems and to make sure it is not something more serious. It may have been there for a while, and got aggravated by my falling platelet counts--and my meds. In any case, it is more settled down now and does not bleed as much as it did last month. They are waiting for my Friday bloodwork, to see what my platelets are before scheduling me into surgery. The doc wants them to be at least 100; 3 weeks ago they were 55...:) so I think it is a pipe-dream. I may have to get a platelet transfusion at the same time to promote post-surgery healing. So not entirely awesome news. On the other hand, considering that it may have been there for a while, a potential point of entry of Hep C virus into my body has been uncovered.
Ribavirin aches
Egag! I moved my ribavirin times to 0100 and 0900 to try to capitalize on the drowsiness it causes. And it would have worked, except...
The latest kick from ribavirin is nausea that starts about one-two hours after I take it and lasts for a couple of hours at least. It seems to get stronger with each application. I suppose I could sleep through that, and through the horrid parched mouth raging thirst that it causes, but it also magnifies every pain and ache in my body an hundredfold. There is a swarm of angry bees in my hands, where the papercuts are (and, adding insult to injury, the damn cuts take forever to heal, due to my low platelets). My right shoulder, where there is a little asymmetry as I type at the computer keyboard at work is a giant knot of pain and misery. In my nose, the bleeding spot is a burrowing toothed worm. Gah! Am I doomed to no sleep for 16 more weeks? I can see why many patients develop depression at this stage of the treatment.
This Friday, more bloodwork. We'll see if I have any platelets left...
The latest kick from ribavirin is nausea that starts about one-two hours after I take it and lasts for a couple of hours at least. It seems to get stronger with each application. I suppose I could sleep through that, and through the horrid parched mouth raging thirst that it causes, but it also magnifies every pain and ache in my body an hundredfold. There is a swarm of angry bees in my hands, where the papercuts are (and, adding insult to injury, the damn cuts take forever to heal, due to my low platelets). My right shoulder, where there is a little asymmetry as I type at the computer keyboard at work is a giant knot of pain and misery. In my nose, the bleeding spot is a burrowing toothed worm. Gah! Am I doomed to no sleep for 16 more weeks? I can see why many patients develop depression at this stage of the treatment.
This Friday, more bloodwork. We'll see if I have any platelets left...
Sunday, April 15, 2012
Interferon catches up!
Up until today, my interferon side-effects were minimal, as it turns out. Tonight, with my 8th shot, I think that I finally realize what people are talking about. Just did it 10 minites ago; right now, I am lying down, achy and miserable. The weird vague abdominal hollow ache associated with flu, mild but horribly annoying background muscular pangs, general weakness and, for lack of a better word, discombobulation--it's all there, although the slight disorientation that attends the first few minutes after the shot has gone away--and the general feebleness seems to be dissipating. But WHOOO! rhis was a sort of a rush I'd never had before--and hope that it goes away quickly. I only have to experience it at least 16 more times...
Wednesday, April 11, 2012
A miscellany of decrepitude
Here are some interesting observations: each day, I walk from the MAX station to my work and back, about 2 km each way. Before I started the treatment, it took me a little less than 20 minutes and I arrived fresh and comfortable. Now it takes me more than 25 minutes, and I am out of breath, winded and generally miserable at the end of it. GAAAAH!
A change in timing: moved my ribavirin med times from 0900 and 1700 to 1700 and 0100, leaving incivek times the same. Ribavirin makes me drowsy (and somewhat nauseous) so better to do at night. Helps me sleep...:)
There are two teams working on Hep C vaccine, and both promise one within 5 years. wonderful news, if it pans out, but of course we must not get our hopes up prematurely: such breakthroughs have been announced before, and if HIV research is any indication, optimism is not warranted at this point at least. Anyway, here and here.
A change in timing: moved my ribavirin med times from 0900 and 1700 to 1700 and 0100, leaving incivek times the same. Ribavirin makes me drowsy (and somewhat nauseous) so better to do at night. Helps me sleep...:)
There are two teams working on Hep C vaccine, and both promise one within 5 years. wonderful news, if it pans out, but of course we must not get our hopes up prematurely: such breakthroughs have been announced before, and if HIV research is any indication, optimism is not warranted at this point at least. Anyway, here and here.
Tuesday, April 10, 2012
The Wackiness advances
6.5 weeks into my incivek, with 5.5 weeks to go....unless either my platelets drop below 30, significantly increasing the risk of a stroke, or the rashes cover over 50% of my body. The night before last, I had 1 patch. Now I have at least 5; at least they are not too irritating...yet. My GE, ever an optimist, says that they are likely to grow and there is a non-negligible chance of getting one in my anus, which will certainly make it slightly less fun.
Otherwise, my anemia is certainly within acceptable (and even encouraging, since it indicates that the treatment is functioning as intended!) limits even though I can only walk for 2-3 blocks before stopping to catch a breath--and slowly, at that! And the aches and pains are growing, and cycling about, ranging from mild nausea right after medication to a thorough funk right *before* medication to everything in between.
Also, cogninitve effects: it is becoming more and more difficult to concentrate and process information. For the first time in my life, I am having problems reading: the effort puts me to sleep, as likely as not. Sensitivity to light has increased, together with some rather nifty visuals which deserve a post of their own.
But enough pissing and moaning! The good news are that the viral load remains undetectable and that I only have to keep taking incivek, which is the primary culprit, for 39 days only. The other meds will continue for at least 12 more weeks after that, and they have their own set of side-effects, but incivek is apparently the nastiest--and the most likely to work. So I guess my chances of survival for the next 5.5 weeks are relatively high...:D
Otherwise, my anemia is certainly within acceptable (and even encouraging, since it indicates that the treatment is functioning as intended!) limits even though I can only walk for 2-3 blocks before stopping to catch a breath--and slowly, at that! And the aches and pains are growing, and cycling about, ranging from mild nausea right after medication to a thorough funk right *before* medication to everything in between.
Also, cogninitve effects: it is becoming more and more difficult to concentrate and process information. For the first time in my life, I am having problems reading: the effort puts me to sleep, as likely as not. Sensitivity to light has increased, together with some rather nifty visuals which deserve a post of their own.
But enough pissing and moaning! The good news are that the viral load remains undetectable and that I only have to keep taking incivek, which is the primary culprit, for 39 days only. The other meds will continue for at least 12 more weeks after that, and they have their own set of side-effects, but incivek is apparently the nastiest--and the most likely to work. So I guess my chances of survival for the next 5.5 weeks are relatively high...:D
Monday, April 9, 2012
New developments
I was definitely hoping to avoid the rashes associated with the treatment, but it doesn't look like I am going to be so lucky. First traces exhibited themselves around my right elbow on Friday, almost unnoticeable then. Since then it has grown into a patch covered in hard nodules, no strange colours or anything, only mildly itchy. Looking online, I find that it is common for such rashes to begin during the 7th week of treatment--which I am entering into now. Blargh. We shall see. So far, not red or blistery. Apparently, the treatment is continued while the rash covers less than 50% of the body. I guess there are ways to control it, and associated itchiness. I have an appointment with my GE tomorrow and will report afterwards.
Sunday, April 1, 2012
Everybody, have a shot for me
My viral loads are undetectable, down from 15 mln 4 weeks ago. Have a drink for me; in a few months it looks like I'll be able to (cautiously) join you:
Hepatitis C Quant Not Detected <=43 IU/mL Final
Hepatitis C Quant Log Not Detected <=1.6 LOG 10 Final
Hepatitis C Quant Not Detected <=43 IU/mL Final
Hepatitis C Quant Log Not Detected <=1.6 LOG 10 Final
A small text file
Something like 9.6 kB, 3000 amino-acids: a ridiculously small beast. The complete genome as an XLS file available here, for those who want to synthesize the damn thing themselves.
Subscribe to:
Posts (Atom)