Interferon-free treatments
Although one sentence here is a bit misleading: "Interferon is a fierce drug". It may be, but I find it to be almost tame compared to incivek, although your mileage may vary, and it depends on what kinds of side-effects you find more nasty.
But yes, I am a bit pissed off about possibly having just missed an easier treatment. Incivek may be worse, but only a fool would forego a chance to give one of these motherfuckers up if they could.
Monday, July 9, 2012
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.
Friday, June 22, 2012
4 weeks post-Incivek
..and one week post-transfusion, my blood was patchy. A lot of the changes can be partially attributed to the transfusion, of course. Bad: white blood cells down, at their lowest since April; liver enzymes are up--both by about 15 points. Neutrophils are down. Most of that is probably a reaction to my vampirism, so will pass. Better news: H+H and RBCs both up--partially, but not entirely due to transfusion. They seem to be improving, and even though now that the transfusion had worn off I am feeling a bit crappy, it is not as bad as it was two weeks ago. Looks like I am out of the dangerous zone at least.
The most positive and surprising in a good way result is my platelet levels: they are up to 98, up 30 points in 4 weeks, And they have nothing to do with any new blood: I only got RBCs. So that is good and an indication that as Incivek is leaving my body, my bone marrow function is returning closer to normal.
And I feel better in general: I can do 3 or 4 Tigger-style bounces before becoming exhausted, when two weeks ago I could not do any!
Of course, the effects of other meds are still nasty. For two-three hours after eating my ribavirin I still feel like being thrust head first into a shit-hole while being belaboured about the ribs by sticks in slo-mo. Although, whereas in the past it was baseball bats, now they are rubber-encased metal clubs: hurts a bit less and leaves less memories, at least. And interferon is increasing in nastiness each week. Only 7 of those left, however! Getting there!
I don't know about that awesome-looking rum, but several ciders will be in order when I am done, Again, I will still be under observation for 6 more months, so will not be able to debauch until then at least...but I suggest that at the end of it, everyone should meet me in London for a nice pub-crawl.
The most positive and surprising in a good way result is my platelet levels: they are up to 98, up 30 points in 4 weeks, And they have nothing to do with any new blood: I only got RBCs. So that is good and an indication that as Incivek is leaving my body, my bone marrow function is returning closer to normal.
And I feel better in general: I can do 3 or 4 Tigger-style bounces before becoming exhausted, when two weeks ago I could not do any!
Of course, the effects of other meds are still nasty. For two-three hours after eating my ribavirin I still feel like being thrust head first into a shit-hole while being belaboured about the ribs by sticks in slo-mo. Although, whereas in the past it was baseball bats, now they are rubber-encased metal clubs: hurts a bit less and leaves less memories, at least. And interferon is increasing in nastiness each week. Only 7 of those left, however! Getting there!
I don't know about that awesome-looking rum, but several ciders will be in order when I am done, Again, I will still be under observation for 6 more months, so will not be able to debauch until then at least...but I suggest that at the end of it, everyone should meet me in London for a nice pub-crawl.
Friday, June 15, 2012
No news is good news
Today, I ran to catch a bus and did not black out! Not even close!
A week after transfusion, I am slightly weak, a bit out of breath on occasion and a little pale, but oodles better than I was at the same time last week. What's more, with the new baseline of decay, side-effects of meds are not as nasty either. Like I said, no news is good news. Had more bloodwork done today (and, incidentally, my platelets must be up: my bruising now is minimal) and will know the results in a few days. I suppose that the results are not going to be exactly indicative of the true state of affairs, due to the continuing effects of the transfusion. Initially, it probably bumped my hemoglobin by about 4 points. So at most, I'll have to subtract those 4 points to arrive at the true levels, and actually it'll be less than that since it has been a week since the transfusion and my hemoglobin has probably dropped a bit since then. Anyway, that's all for now. It is weird, feeling at least closer to normal: I'd forgotten what it felt like!
A week after transfusion, I am slightly weak, a bit out of breath on occasion and a little pale, but oodles better than I was at the same time last week. What's more, with the new baseline of decay, side-effects of meds are not as nasty either. Like I said, no news is good news. Had more bloodwork done today (and, incidentally, my platelets must be up: my bruising now is minimal) and will know the results in a few days. I suppose that the results are not going to be exactly indicative of the true state of affairs, due to the continuing effects of the transfusion. Initially, it probably bumped my hemoglobin by about 4 points. So at most, I'll have to subtract those 4 points to arrive at the true levels, and actually it'll be less than that since it has been a week since the transfusion and my hemoglobin has probably dropped a bit since then. Anyway, that's all for now. It is weird, feeling at least closer to normal: I'd forgotten what it felt like!
Saturday, June 9, 2012
Vampirism is good for you
I am back, having ingested a pint of AB+ and another one of AB- blood. I am not sure whether is was riboflavin-flavoured, but it certainly was NOT carbonated. Minor rash around the injection side that is subsiding as I type this. No other detrimental effects. On the other hand, I am now rosy-cheeked (literally!), bushy-tailed, bright-eyed and with a freshly stiffened frontal member. I can move faster than a snail without panting for air, and my lungs are no longer burning after 10 steps. Also, actually thinking and reading does not automatically make me drowsy. All in all, a good bargain, I suppose. But it took a goddamn long time, will probably cost me the rest of my yearly deductible and will last for 10 days at most. I hope that my hemoglobin rebounds at least a little bit by then: I don't really want to be spending most of every other Saturday at the outpatient transfusion center (which is now located in the cancer center) for the next two months. On the other hand, the nurses confirmed what I already suspected: I am fucking tough. They say that many other people have side-effects worse than mine (including anemia) and that most people with my hemoglobin levels would be whining and demanding a wheelchair rather than hoofing 2 miles to work and back daily. So yes, though I walk through the valley of death, I have no fear because I am the toughest meanest motherfucker in the whole damned valley! Hurrah! :D
Wednesday, June 6, 2012
Vampirism in reverse and other blood matters
The latest bloodwork results are in; apparently there is no depth of depravity to which my hemoglobin would not be prepared to sink. It is at 7.5 (or was, last Friday) which is well into the region of "severe anemia" and I have an appointment with reverse vampires now. On Sat Jun 9th at 0900 they will pump two units of someone else's red blood cells into my veins. If I do not report afterwards, consider the possibility that I may have exploded like a tick or a mosquito who'd sucked too much blood. But probably not.
In better news, my white blood cells, at least, have begun to climb back up. My doctor thinks that it is a sign that my bone marrow, ravaged by the triple therapy attack and now only forced to defend itself against double therapy attack, is beginning to recover somewhat. The effects of the transfusion will last for up to 10 days, during which time RBCs/hemoglobin will also have a chance to recover to less worrisome levels, Or so the thinking goes.
Finally, in completely bizarre news, my left arm had shrunk! The rash on it was much more severe than that on the right one, and it appears as if incivek had just eaten the muscle mass from under the rash! It still itches as well. Anyway, I'd lost about an inch from my bicep and my tricep is barely detectable. The arm feels like a ramshackle construction of skin, bone, dried-out cartilage, and bumpy rash scars. Whatever muscles are discernible are weak and flabby, and somehow hollow. This means that as soon as I get some oxygen in my bloodstream it'll be weight-lifting (and bicycling, but that's a different story!) time. Hurrah! Damn the anti-matter relativistic torpedoes! Onward, raving lunatics!
I really really REALLY REALLY want an Isestegi cider.
In better news, my white blood cells, at least, have begun to climb back up. My doctor thinks that it is a sign that my bone marrow, ravaged by the triple therapy attack and now only forced to defend itself against double therapy attack, is beginning to recover somewhat. The effects of the transfusion will last for up to 10 days, during which time RBCs/hemoglobin will also have a chance to recover to less worrisome levels, Or so the thinking goes.
Finally, in completely bizarre news, my left arm had shrunk! The rash on it was much more severe than that on the right one, and it appears as if incivek had just eaten the muscle mass from under the rash! It still itches as well. Anyway, I'd lost about an inch from my bicep and my tricep is barely detectable. The arm feels like a ramshackle construction of skin, bone, dried-out cartilage, and bumpy rash scars. Whatever muscles are discernible are weak and flabby, and somehow hollow. This means that as soon as I get some oxygen in my bloodstream it'll be weight-lifting (and bicycling, but that's a different story!) time. Hurrah! Damn the anti-matter relativistic torpedoes! Onward, raving lunatics!
I really really REALLY REALLY want an Isestegi cider.
Sunday, June 3, 2012
New Horizons of Pain
Haha, now that the deadening pall of incivek has been lifted from my body I can more properly appreciate the special effects produced by the other members of the team. I was already familiar with the icky burning sensation and mild nausea that was the hallmark of brother ribavirin, but uncle interferon had largely ignored me for the first 14 weeks. The few mild production touches had hardly prepared me for last night's full-on wall-of-pain treatment. Mssrs Inter-Phil-Ron Spector woke me up at 3:30AM, about 5 hours after taking my injection, with shuddersome muscle aches, horrifying thirst, some headache and the general feeling of having fallen off a bridge at some point previously. His show lasted for a couple of hours, and still there are traces of ache now. The permanent "flu-like" symptom appears to have settled upon me. Motherfucker! Still, nine more shots only. And, according to the doctors, side-effects are in many ways an indication of the efficacy of the medicine: the worse it hurts now, the better the chances of complete success eventually. Very Calvinist of them, but I suppose I'll take their word for it, provisionally.
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