Aa
4 week lab results
I haven't been posting much this treatment round, but I thought I'd share results from my 4 week labs. After 28 days of Tx, my assay results are as follows:
HCV RNA Quant, bDNA < 615 IU/ML
HCV TMA Qual, >5 IU/ML
So, undetectable per bDNA quant, but detectable by TMA qual. According to the hepatology nurse at Cal Pac Medical Center, this meets their criteria for RVR.
Additionally, my ALT/AST have both normalized to 27 U/L, for the first time in years. Both a virological and bio-chemical early response are extremely encouraging, especially considering the luke-warm results I experienced during my previous treatment.
Here is a brief overview of my treatment history:
51 year old Caucasian male
Genotype 1a
Grade 2, stage 3.5
226 lbs
Diabetes M. type 2
Dx with HCV 12/04
Treated with Pegasys/ Copegus total 56 weeks, from 2/05 through 3/06.
Slow viral response at 12 week assay, so increased riba from assigned 1200 mg/day to 1800 mg/day.
Became undetectable to <50 IU by week 20.
Relapsed within 30 days post Tx
Began treatment again on 9/15/06 with Peg-Intron 150 mcg/week, and ribavirin 2000 mg/day. (I've actually been squeezing the vial, and injecting .67 mL from the assigned 150 mcg/.50 mL vial, giving me an unassigned dosage of approx 202 micrograms/week. I disclosed this at last week's appointment, and so far, the poop hasn't hit the paddles!).
Hemoglobin has taken an expected hit, down to 13.2 from the baseline value of 17.3; however I feel really good from a subjective standpoint. I still walk 4 miles twice daily, much of which involves grades of 10-12 %, and don't feel "winded" yet. The nurse I spoke with this afternoon said they'd leave it up to me to cry uncle for EPO, but I don't feel any need as of yet. The rest of my labs are unremarkable, so I suppose I'll continue with the off-label dosing unless something comes along that substantially changes the equation.
One thing of interest: I intentionally waited 10 days after receiving my meds from Curascript pharmacy to begin Tx, to allow a cushion for shipment delays over the course of treatment. This has already paid off, because Curascript dropped the ball between the first and second month delivery due to off-label dosing. By the time we got re-approval from my doc's office and got back on track, we had nearly exhausted the extra days I had built in. I'd definitely recommend that all folks contemplating beginning treatment strongly consider this approach to assure an un-interrupted flow of service.
My best to everyone at MH, and I'll continue to stop in from time to time to say hello.
Be well,
Bill
HCV RNA Quant, bDNA < 615 IU/ML
HCV TMA Qual, >5 IU/ML
So, undetectable per bDNA quant, but detectable by TMA qual. According to the hepatology nurse at Cal Pac Medical Center, this meets their criteria for RVR.
Additionally, my ALT/AST have both normalized to 27 U/L, for the first time in years. Both a virological and bio-chemical early response are extremely encouraging, especially considering the luke-warm results I experienced during my previous treatment.
Here is a brief overview of my treatment history:
51 year old Caucasian male
Genotype 1a
Grade 2, stage 3.5
226 lbs
Diabetes M. type 2
Dx with HCV 12/04
Treated with Pegasys/ Copegus total 56 weeks, from 2/05 through 3/06.
Slow viral response at 12 week assay, so increased riba from assigned 1200 mg/day to 1800 mg/day.
Became undetectable to <50 IU by week 20.
Relapsed within 30 days post Tx
Began treatment again on 9/15/06 with Peg-Intron 150 mcg/week, and ribavirin 2000 mg/day. (I've actually been squeezing the vial, and injecting .67 mL from the assigned 150 mcg/.50 mL vial, giving me an unassigned dosage of approx 202 micrograms/week. I disclosed this at last week's appointment, and so far, the poop hasn't hit the paddles!).
Hemoglobin has taken an expected hit, down to 13.2 from the baseline value of 17.3; however I feel really good from a subjective standpoint. I still walk 4 miles twice daily, much of which involves grades of 10-12 %, and don't feel "winded" yet. The nurse I spoke with this afternoon said they'd leave it up to me to cry uncle for EPO, but I don't feel any need as of yet. The rest of my labs are unremarkable, so I suppose I'll continue with the off-label dosing unless something comes along that substantially changes the equation.
One thing of interest: I intentionally waited 10 days after receiving my meds from Curascript pharmacy to begin Tx, to allow a cushion for shipment delays over the course of treatment. This has already paid off, because Curascript dropped the ball between the first and second month delivery due to off-label dosing. By the time we got re-approval from my doc's office and got back on track, we had nearly exhausted the extra days I had built in. I'd definitely recommend that all folks contemplating beginning treatment strongly consider this approach to assure an un-interrupted flow of service.
My best to everyone at MH, and I'll continue to stop in from time to time to say hello.
Be well,
Bill
Here is DD'S link. It didn't get much of a response, don't know why, but frequently nuggets of good info get lost with so many new threads being opened. Personally I don't like it at all. Also I have a dial up, takes forever to return, so I just keep skipping.
http://bjp.rcpsych.org/cgi/content/full/176/5/494-a
Ina
http://bjp.rcpsych.org/cgi/content/full/176/5/494-a
Ina
Walking diabetic disaster is the correct word. How was that missed, I mean we have at a minimum a monthly CMP during tx, which gives us the fasting glucose...at our local lab it's included.
Post tx has been very difficult to say the least. After tx my fasting glucose rose to approx 102-104, and my triglycerides (220) refused to come down to pre tx levels. Doc put me on a 60 gram carbohydrates a day, and 3 month later, both values moved in to the normal range. But staying on such low carb diet a day is becoming very difficult, and I am not sure how to proceed.
The derm issues are still there, but have greatly improved.
My mental state is of great concern to me. I deal with daily stresses very poorly, not motivated, difficulty concentrating, I don't seem to find any joy in living, I am flat, no spark, I worry incessantly, and on and on, you get the picture...a basket case.
Great difficulty sleeping, zero libido, difficulty getting thyroid adjusted. I had lost 75% of my hair, and none has come back so far, but I consider that a mimor problem.
This month I will be getting a diagnosis of inflammatory bowel disease, Crohn's, or Celiac disease, stuff that had developed 6 weeks into tx. It had greatly improved, but was never gone, and it looks like Interferon is leaving me with intestinal problems to remember it by.
I seem to be the only one here that is looking at the adrenal glands being the culprit for many of our post tx problems.
I think one of the reasons is, that the function of the adrenal glands is difficult to understand. They make so many different hormones, which in turn change into other hormones, which are being released according to demand, etc etc.
The thyroid is a walk in the park compared to the adrenals.
Knowing how Interferon plays havoc with our hormone system, it stands to reason, that the adrenals could be affected too.
DD just linked a paper, "Depression and interferon-alpha therapy", which confirms, that I have not been barking up the wrong tree.
I requested to have my cortisol levels checked with a "cortisol stimulation test", and it came back very very low. My DHEA is below normal, and my testosterone as well.
Read DD's paper, and study the function of the adrenals, the relation of cortisol to DHEA to testosterone, and all our mental issues as well as some physical ones will make sense.
Right now your concern is about getting rid of the virus, but one day you be a post tx as well, and (hopefully not) you have to grabble with post tx issues too.
If I didn't have such difficulty writing (fog), I would open a post and explain the importance of those glands.
So I apologize, after all this rambling, I am leaving you with not much information on this subject.
I will bring DD's link here, so you don't have to search for it.
Some people will just pop an AD and be done, but I can't do that.
I have to know what makes things tick, I guess the knowledge of why I feel the way I do, gives me a sense of control, as well lets me guide my treatment approach.
As you know, doc does not always know best.
I do want to mention here, that I don't believe (could be wrong though), that my very unusual long tx (over 2 years none stop), has anything to do with it. Another words, I have seen plenty of post, here and other places, were 48, 60 or 72 week treaters expirience similar problems.
My CBC, except for platelets (but well within normal) all did rapidly returned back to pre tx levels.
The choices we make, and the price we pay...but sometimes we don't have a choice, right.
Be as well as you can,and thanks for asking.
Ina
Post tx has been very difficult to say the least. After tx my fasting glucose rose to approx 102-104, and my triglycerides (220) refused to come down to pre tx levels. Doc put me on a 60 gram carbohydrates a day, and 3 month later, both values moved in to the normal range. But staying on such low carb diet a day is becoming very difficult, and I am not sure how to proceed.
The derm issues are still there, but have greatly improved.
My mental state is of great concern to me. I deal with daily stresses very poorly, not motivated, difficulty concentrating, I don't seem to find any joy in living, I am flat, no spark, I worry incessantly, and on and on, you get the picture...a basket case.
Great difficulty sleeping, zero libido, difficulty getting thyroid adjusted. I had lost 75% of my hair, and none has come back so far, but I consider that a mimor problem.
This month I will be getting a diagnosis of inflammatory bowel disease, Crohn's, or Celiac disease, stuff that had developed 6 weeks into tx. It had greatly improved, but was never gone, and it looks like Interferon is leaving me with intestinal problems to remember it by.
I seem to be the only one here that is looking at the adrenal glands being the culprit for many of our post tx problems.
I think one of the reasons is, that the function of the adrenal glands is difficult to understand. They make so many different hormones, which in turn change into other hormones, which are being released according to demand, etc etc.
The thyroid is a walk in the park compared to the adrenals.
Knowing how Interferon plays havoc with our hormone system, it stands to reason, that the adrenals could be affected too.
DD just linked a paper, "Depression and interferon-alpha therapy", which confirms, that I have not been barking up the wrong tree.
I requested to have my cortisol levels checked with a "cortisol stimulation test", and it came back very very low. My DHEA is below normal, and my testosterone as well.
Read DD's paper, and study the function of the adrenals, the relation of cortisol to DHEA to testosterone, and all our mental issues as well as some physical ones will make sense.
Right now your concern is about getting rid of the virus, but one day you be a post tx as well, and (hopefully not) you have to grabble with post tx issues too.
If I didn't have such difficulty writing (fog), I would open a post and explain the importance of those glands.
So I apologize, after all this rambling, I am leaving you with not much information on this subject.
I will bring DD's link here, so you don't have to search for it.
Some people will just pop an AD and be done, but I can't do that.
I have to know what makes things tick, I guess the knowledge of why I feel the way I do, gives me a sense of control, as well lets me guide my treatment approach.
As you know, doc does not always know best.
I do want to mention here, that I don't believe (could be wrong though), that my very unusual long tx (over 2 years none stop), has anything to do with it. Another words, I have seen plenty of post, here and other places, were 48, 60 or 72 week treaters expirience similar problems.
My CBC, except for platelets (but well within normal) all did rapidly returned back to pre tx levels.
The choices we make, and the price we pay...but sometimes we don't have a choice, right.
Be as well as you can,and thanks for asking.
Ina
Aw, Ina, thanks for thinking of me. I know what you mean; the 'flavor' of this forum has changed so much recently. It used to be much more intimate, with everyone fairly knowledgeable of each others stats and such... on the other side of the coin, however; so many more patients are reaching out and being helped, it's hard to determine which method serves the community best, IMHO anyway.
To answer your question regarding my BG stats, it's hard for me to sort out other contributing factors other than weight loss alone. For instance, over the last 6 months or so I've added a low dose of Lantus (insulin) to my diabetes Rx arsenal, as well as diet modification and exercise. I do use a web-based tracking program offered by Roche diagnostics called 'Diabetes Assistant',
https://www.rochediagnostics.com.au/Accu-Chek/index.asp?s1=Diabetes%20Assistant
that has some excellent graphics and manages stats quite well if you're willing to spend the time to plug the data in. Looking back over my records, I was pretty much a walking diabetic disaster last treatment. The highest A1c I recorded was 10.5 back on 6/21/06, with an average fasting/post prandial combo of 291.4 mg/dL!
Since then, my most recent A1c was 6.2 on 8/14/06, with a corresponding BG average of 75.7 mg/dL, so I've clearly made some improvement in this area. Keep in mind that Tx meds skew the A1c test results dramatically, so those values are questionable at best.
I hope this answers some of your questions, and if you get a moment, let me know how you're fairing with post Tx issues; I know the derm problems have been a nightmare for you, and I hope the are self limiting in nature.
Again, take good care, gal; and stay in touch,
Bill
To answer your question regarding my BG stats, it's hard for me to sort out other contributing factors other than weight loss alone. For instance, over the last 6 months or so I've added a low dose of Lantus (insulin) to my diabetes Rx arsenal, as well as diet modification and exercise. I do use a web-based tracking program offered by Roche diagnostics called 'Diabetes Assistant',
https://www.rochediagnostics.com.au/Accu-Chek/index.asp?s1=Diabetes%20Assistant
that has some excellent graphics and manages stats quite well if you're willing to spend the time to plug the data in. Looking back over my records, I was pretty much a walking diabetic disaster last treatment. The highest A1c I recorded was 10.5 back on 6/21/06, with an average fasting/post prandial combo of 291.4 mg/dL!
Since then, my most recent A1c was 6.2 on 8/14/06, with a corresponding BG average of 75.7 mg/dL, so I've clearly made some improvement in this area. Keep in mind that Tx meds skew the A1c test results dramatically, so those values are questionable at best.
I hope this answers some of your questions, and if you get a moment, let me know how you're fairing with post Tx issues; I know the derm problems have been a nightmare for you, and I hope the are self limiting in nature.
Again, take good care, gal; and stay in touch,
Bill
I can barely catch up with these many posts popping up here.
You news is marvelous, you must be singing with joy.
Would you mind telling me how much you fasting glucose, or HbA1c dropped after loosing the weight.
"Skinny Bill", I wish you the best, I really mean it, from the heart.
Ina
You news is marvelous, you must be singing with joy.
Would you mind telling me how much you fasting glucose, or HbA1c dropped after loosing the weight.
"Skinny Bill", I wish you the best, I really mean it, from the heart.
Ina
Hoy cr@p!
Ya snooze, ya loose around here! This forum has gotten so busy, if you wait a day to respond, the post will practically disappear from sight! A couple of things to edit from my initial comments:
I mentioned above I weighed 226 lbs; I'm actually down to 190. Last Tx kicked my butt emotionally and physically and I laid around on the couch and ate like no tomorrow. My weight eventually topped out at around 255-- so over the last 7 or 8 months I've intentionally lost about 65 pounds. This in turn has lowered my insulin resistance, and may be partially responsible for increased efficacy of the treatment drugs. Additionally, I said my Hgb had fallen from 17.3 to 13.2-- at 28 days, it was actually 12.7.
I'd like to thank everyone for taking the time to respond with well wishes in addition to some excellent thoughts regarding treatment options. Each and every comment is really appreciated, and I'd like to take a minute to respond.
Pdilly-- Best of luck to you in your treatment journey. I hope you have minimal sides and rapid response. Please consider building and maintaining at *least* a week's cushion between you and Curascript- last year they almost missed me due to a hurricane warning. (Orlando, FL)!
FLGuy-- Best to you as well on your second go-around. 2b or not 2b, LOL; is that the question? I honestly don't know why I'm not getting kicked by the Peg-Intron like the Pegasys, but this is a whole different animal when it comes to Sx. I can't even tell I'm on treatment. Yet. (Gulp)!
Amirtracy-- Thanks for your kind thoughts; and best of luck with your remaining treatment experience.
Kalio1-- It's wonderful to see you still hanging in there despite your recent illness, and the incredible duration. I've been a carpenter all my life, so life-style has provided all the exercise I needed before. Boy, not working for a while has shown me the benefit of modest physical exertion. It really and truly makes a difference in attitude. In terms of dosage, I'm probably with the best doctors in town regarding aggressive treatment strategies; they treat off label quite a bit. Let me know if you nee any info regarding CPMC; I have a good list of contact #'s. Take good care, Gal!!
Jmjm530-- In my haste last time, I forgot to congratulate you on your hard won SVR status; it couldn't have happened to a more deserving person. Thanks as well for your tenacity in sticking around here and continuing to offer advise and counsel as well as your own brand of humor;-) -- it's sorely needed here at times. Regarding Tx duration, I left that open with the doctor initially; looks like we might be able to tighten that up a little now. Regarding the VL assays, they perform bDNA quant with reflex to TMA qual as a cost effective alternative to Heptimax; so many other doctors and local clinics mimic CPMC's guidelines/Tx protocol that they feel obligated to keep cost down wherever possible. They do include Heptimax as an alternative to be used at critical junctures during treatment; however, it might be hard to justify the need for that accuracy at this point in my treatment. I will continue to use the current methodology at 30 day intervals until it becomes a moot need. All the best to you moving forward in your non-HCV life, my friend, and stay in touch.
Mikesimon-- Thanks for the good words, old friend-- I hope you get to the bottom of your recent quasi-recurrence? Of HCV RNA in parenchymal tissue??-- There are so few signposts out there to follow when something like this occurs; I suppose that maintenance is the safest way to proceed. Has your team discussed the long term outlook for prognosis? Any talk of another biopsy in the near future, even if just for assay purposes? Best to you going forward, Mike, and thanks for stopping in.
Cuteus-- Another old-timer here that continues to give graciously of her time. I'd like to thank you as well for your continued effort on this board; we tend to take your support for granted here to easily and assume that you're "part of the package" here at MH. In short, thanks for being here for me as well as all the rest of us. Your wisdom is, as always, appreciated. Take real good care, gal!
Chev- Thanks, and yeah, I got your number and I'll catch up with ya soon-- I hope you're taking care-- Bill
Honey11-- Thank you as well for the nice words; I'll check for you at the bottom from time to time!
Beamishboy-- Best of luck to you on your upcoming VL assays; are you going to do a 30-day PCR? Gotta feel good to get off the poison and back into the real world, huh? Stay in touch, guy.
Friole-- Thanks for stopping in to say hi, Kathy; always nice to hear from you. BuckeyeBean, LOL!! I was talking to a couple of Buckeye nuts from Logan County the other day and think I might run (well, fly) back to say howdy. Besides, I'm almost out of OSU T-shirts from my last stay in Columbus! Congrats on finishing up the dope, and please stay in touch with the outcome when it's available, OK? Until then, best of luck, Bill.
Landfill-- Thanks for the factoids-- I thought there might be filler/vehicle in the vial of Peg, but I didn't really know how much. Really is amazing when we view it that way, huh? Especially considering that although my VL reads <615, by the time we do the math and extrapolate the total copies of virus remaining in the body amount to 100's of thousands, if not millions that those two grains of Peg have to conquer....
Child24angel-- Well, hi there stranger! Thanks for the kind words, Elaine; I hope all is going well for Nick; give him my best wishes and stay in touch, OK?
Better-Angels-- Debbe; thanks for taking the time to stop by with encouragement. I wish you and your hubby the nothing but the best when those results arrive-- it sounds as though he's been through enough drama to last several lifetimes. Again, thanks for stopping in, and let's stay in touch, Bill.
Ya snooze, ya loose around here! This forum has gotten so busy, if you wait a day to respond, the post will practically disappear from sight! A couple of things to edit from my initial comments:
I mentioned above I weighed 226 lbs; I'm actually down to 190. Last Tx kicked my butt emotionally and physically and I laid around on the couch and ate like no tomorrow. My weight eventually topped out at around 255-- so over the last 7 or 8 months I've intentionally lost about 65 pounds. This in turn has lowered my insulin resistance, and may be partially responsible for increased efficacy of the treatment drugs. Additionally, I said my Hgb had fallen from 17.3 to 13.2-- at 28 days, it was actually 12.7.
I'd like to thank everyone for taking the time to respond with well wishes in addition to some excellent thoughts regarding treatment options. Each and every comment is really appreciated, and I'd like to take a minute to respond.
Pdilly-- Best of luck to you in your treatment journey. I hope you have minimal sides and rapid response. Please consider building and maintaining at *least* a week's cushion between you and Curascript- last year they almost missed me due to a hurricane warning. (Orlando, FL)!
FLGuy-- Best to you as well on your second go-around. 2b or not 2b, LOL; is that the question? I honestly don't know why I'm not getting kicked by the Peg-Intron like the Pegasys, but this is a whole different animal when it comes to Sx. I can't even tell I'm on treatment. Yet. (Gulp)!
Amirtracy-- Thanks for your kind thoughts; and best of luck with your remaining treatment experience.
Kalio1-- It's wonderful to see you still hanging in there despite your recent illness, and the incredible duration. I've been a carpenter all my life, so life-style has provided all the exercise I needed before. Boy, not working for a while has shown me the benefit of modest physical exertion. It really and truly makes a difference in attitude. In terms of dosage, I'm probably with the best doctors in town regarding aggressive treatment strategies; they treat off label quite a bit. Let me know if you nee any info regarding CPMC; I have a good list of contact #'s. Take good care, Gal!!
Jmjm530-- In my haste last time, I forgot to congratulate you on your hard won SVR status; it couldn't have happened to a more deserving person. Thanks as well for your tenacity in sticking around here and continuing to offer advise and counsel as well as your own brand of humor;-) -- it's sorely needed here at times. Regarding Tx duration, I left that open with the doctor initially; looks like we might be able to tighten that up a little now. Regarding the VL assays, they perform bDNA quant with reflex to TMA qual as a cost effective alternative to Heptimax; so many other doctors and local clinics mimic CPMC's guidelines/Tx protocol that they feel obligated to keep cost down wherever possible. They do include Heptimax as an alternative to be used at critical junctures during treatment; however, it might be hard to justify the need for that accuracy at this point in my treatment. I will continue to use the current methodology at 30 day intervals until it becomes a moot need. All the best to you moving forward in your non-HCV life, my friend, and stay in touch.
Mikesimon-- Thanks for the good words, old friend-- I hope you get to the bottom of your recent quasi-recurrence? Of HCV RNA in parenchymal tissue??-- There are so few signposts out there to follow when something like this occurs; I suppose that maintenance is the safest way to proceed. Has your team discussed the long term outlook for prognosis? Any talk of another biopsy in the near future, even if just for assay purposes? Best to you going forward, Mike, and thanks for stopping in.
Cuteus-- Another old-timer here that continues to give graciously of her time. I'd like to thank you as well for your continued effort on this board; we tend to take your support for granted here to easily and assume that you're "part of the package" here at MH. In short, thanks for being here for me as well as all the rest of us. Your wisdom is, as always, appreciated. Take real good care, gal!
Chev- Thanks, and yeah, I got your number and I'll catch up with ya soon-- I hope you're taking care-- Bill
Honey11-- Thank you as well for the nice words; I'll check for you at the bottom from time to time!
Beamishboy-- Best of luck to you on your upcoming VL assays; are you going to do a 30-day PCR? Gotta feel good to get off the poison and back into the real world, huh? Stay in touch, guy.
Friole-- Thanks for stopping in to say hi, Kathy; always nice to hear from you. BuckeyeBean, LOL!! I was talking to a couple of Buckeye nuts from Logan County the other day and think I might run (well, fly) back to say howdy. Besides, I'm almost out of OSU T-shirts from my last stay in Columbus! Congrats on finishing up the dope, and please stay in touch with the outcome when it's available, OK? Until then, best of luck, Bill.
Landfill-- Thanks for the factoids-- I thought there might be filler/vehicle in the vial of Peg, but I didn't really know how much. Really is amazing when we view it that way, huh? Especially considering that although my VL reads <615, by the time we do the math and extrapolate the total copies of virus remaining in the body amount to 100's of thousands, if not millions that those two grains of Peg have to conquer....
Child24angel-- Well, hi there stranger! Thanks for the kind words, Elaine; I hope all is going well for Nick; give him my best wishes and stay in touch, OK?
Better-Angels-- Debbe; thanks for taking the time to stop by with encouragement. I wish you and your hubby the nothing but the best when those results arrive-- it sounds as though he's been through enough drama to last several lifetimes. Again, thanks for stopping in, and let's stay in touch, Bill.
what did Greg finish? I hope this is it for you guys, what test will he have at 6 month? not the 50Iu one? not after the last time. maybe a whole blood qualitative test? or TMA? keep us posted and best of luck!
A quick note to say I'm happy about your results. These long roads traveled seem endless without signs of encouragement, so I'm glad you've got some for company. My husband takes his 6 month post tx PCR on November 3rd, I hope this time around he had those better angels accompanying him.
Debbe
Debbe
Good luck Bill. While I was reading your post I felt an old disbelief that interferon can do anything at the dose that we use. If you weigh 220lb and you shoot 200mcg it's diluted to 1ppb. How does your body know it's there? If you had to buy an instrument that would detect 1ppb of anything it would cost a million bucks. A grain of table salt weighs about 100 mcg, BTW. Amazing.
Hey, Bill, can't believe you are doing that well on 1800 ribas a day but you sure did condition yourself beforehand.
I am really encouraged by your numbers. Can't they run a more sensitive quantatative? ARe you due for PCRs every 4 weeks?
buckeye bean
I am really encouraged by your numbers. Can't they run a more sensitive quantatative? ARe you due for PCRs every 4 weeks?
buckeye bean
I guess Brian was over my shoulder tonight:) I saw "12" while you wrote "4". Yes, a two-log drop at week 4 is indeed one definition of RVR, and very encouraging. Hope to see you under 5 in the very near future and SVR after that.
-- Jim
-- Jim
much better news this time around! I guess beating the bug while is down is a good strategy!
Atta Boy Bill!! You are off and running and to a great start! May SVR be your prize at the end of the journey! Best Wishes to a Great Person!
bill glad to see your post..thanks for sharing the GOOD news..!! definately responding to good ol peg-intron (UGH)...GOODLUCK
One other thought and something I mention with the big reservation "don't try at home' without talking to your doctor".
It appears riba may have been the problem all along, and it's still possible that you're not absorbing enough, especially if you stay TMA detectible for another 4 weeks or so.
If it were me, I might ask my doctors about increasing the riba dose while simultaneously administering epo to somewhat counterbalance any decrease in hemoglobin. The risk, of course, is more toxicity and exceeding normal protocols -- but it might be something to consider if you can't get non-detectible soon.
-- Jim
It appears riba may have been the problem all along, and it's still possible that you're not absorbing enough, especially if you stay TMA detectible for another 4 weeks or so.
If it were me, I might ask my doctors about increasing the riba dose while simultaneously administering epo to somewhat counterbalance any decrease in hemoglobin. The risk, of course, is more toxicity and exceeding normal protocols -- but it might be something to consider if you can't get non-detectible soon.
-- Jim
hi yourself! i know you've had alot on your plate so seeing you is a plus too. i'm feelin' better than i have in a long time. PROCRIT. (sorry for yellin' it and thankscuteus) i hope you're sisters alright and just fyi, i sent mine a letter 'cuz of you. well 'cuz of you in a good way. ya know what i mean. so maybe i'll hear from her. and that was nice of you guys to offer to speak to thatgirls parents. really nice. you take care- talk to you soon. tracy
Good to see you checking in and back in the saddle. Strong fellow there, it would have taken me a bit longer to give it a second go.
Congratulations on what I believe is a much better response you got the first time around, but really can't remember. However, I take issue with your nurse's statement of RVR (rapid viral response). While the term is used loosely, RVR generally refers to being non-detectible at week 4. Sometimes it might refer to a two-log or better drop at week 4. Never heard used when someone is detectible at week 12.
I mention this not just for accuracy, but in case your medical team is basing future dosage and length on RVR. I imagine you're on a 72-week program anyway as this is your second time around, so really am not sure of the protocols of a delayed non-detectible beyond 12 weeks. There's an video excellent module by Dr. Dieterich and Dr. Jensen over at the Clinical Options site outlining various protocols for relapsers.
If it were me, I'd do another Qual in another week or two and continue at that schedule until non-detectible. Certainly wouldn't wait any longer than week 16 to repeat. Knowing when you become <5 non-detectible is important. This information will not only give your doctors better information to determine tx length, but might allow them to tweak the meds if they think necessary.
All the best.
-- Jim
Congratulations on what I believe is a much better response you got the first time around, but really can't remember. However, I take issue with your nurse's statement of RVR (rapid viral response). While the term is used loosely, RVR generally refers to being non-detectible at week 4. Sometimes it might refer to a two-log or better drop at week 4. Never heard used when someone is detectible at week 12.
I mention this not just for accuracy, but in case your medical team is basing future dosage and length on RVR. I imagine you're on a 72-week program anyway as this is your second time around, so really am not sure of the protocols of a delayed non-detectible beyond 12 weeks. There's an video excellent module by Dr. Dieterich and Dr. Jensen over at the Clinical Options site outlining various protocols for relapsers.
If it were me, I'd do another Qual in another week or two and continue at that schedule until non-detectible. Certainly wouldn't wait any longer than week 16 to repeat. Knowing when you become <5 non-detectible is important. This information will not only give your doctors better information to determine tx length, but might allow them to tweak the meds if they think necessary.
All the best.
-- Jim
Way to go! That is great news! It's like starting the game with a homerun. You are off and running now, or should I say walking! I wish I could walk 4 miles a day!
Thanks for letting us know your great news, that made my day. What is your plan? Stay on that dosage for the duration? You are lucky your doctor would give you that much, mine wouldn't.
Thanks for letting us know your great news, that made my day. What is your plan? Stay on that dosage for the duration? You are lucky your doctor would give you that much, mine wouldn't.
Hey Trace!!!...you must be feeling better, so good to see you here with your positive messages to everyone...be well and make your hubby take you to dinner, ha ha!
bill thanks for the post. very encouraging indeed. sounds like you've got it beat for sure. best of luck to you going forward.
tracy
tracy
Great start. Interesting you went to 2b and got that response. I'm going to 2a, was PegIntron 1st time. Glad you are walking, I think it's the best thing for you on tx. Keep a close eye on the hgb, don't want the bottom to drop out unawares.
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