Aa
Dosage reduction. Cr@p. Impact??
Well, I finally pushed my luck. I just got the call. I've been so obsessed with the damn lymphocytes and whites and it's my reds that got me. I'm down to 9.6 and they are forcing a ribavirin dosage reduction. I have to go from 1200mg to 1000mg immediately and indefinitely. Trial protocol. Not procrit. Ribavirin reduction. My ANC is 1.8 and my lymphocytes are down to .4 .. so no INF reduction because my ANC rebounded enough to offset my lymphocytes.
Indefinite riba reduction. I'm very strong about my feelings on the importance of riba.
I don't go for my next blood test until July 4th and they are reducing it until I get the results of that test back
Today is Week 17. I was UND by Week 6.
Most of you know I'm on the R1626 trial. My choice here is to go with the dosage reduction .. or ... not. Which means dropping the trial.
I would like to have your feedback on the potential impact of a dosage reduction at this point, for about the two weeks I'm facing right now and potentially longer. I'm thinking...as long as I can get back to normal after July 4th, I'm good. Longer than that .. I don't know.
I would appreciate any input, thanks.
The odd thing .. is that I feel pretty good. Not like I'm doing anything overly physical but I'm working fulltime and staying very busy. I'm starting to think I've turned into a tx automaton. Just keeping on keeping on.
Trish
Indefinite riba reduction. I'm very strong about my feelings on the importance of riba.
I don't go for my next blood test until July 4th and they are reducing it until I get the results of that test back
Today is Week 17. I was UND by Week 6.
Most of you know I'm on the R1626 trial. My choice here is to go with the dosage reduction .. or ... not. Which means dropping the trial.
I would like to have your feedback on the potential impact of a dosage reduction at this point, for about the two weeks I'm facing right now and potentially longer. I'm thinking...as long as I can get back to normal after July 4th, I'm good. Longer than that .. I don't know.
I would appreciate any input, thanks.
The odd thing .. is that I feel pretty good. Not like I'm doing anything overly physical but I'm working fulltime and staying very busy. I'm starting to think I've turned into a tx automaton. Just keeping on keeping on.
Trish
Well, the really good news and then the really good news.
I called my trial co-ordinator earlier this week, let her know how I felt..that I was okay with 7 days riba reduction and after that, not and certainly no Peg reduction separately or on top of it. I asked her to let me do the blood test mid week this week as 7 days lands today and results would be back by our appt and then I'd know by today if I could go back to normal dose. She agreed. Thank you. I also let her know I wanted a serious consideration of rescue drugs and where they fit into my picture so that I could avoid future dosage reductions. She agreed to pass my request on to the doctor and arranged for me to consult with him today. What I found out TODAY was that she put me with the doc who is known to be the most aggressive on purpose. Bless her.
So today...my hgb is back above 10 at 10.8. My whites have rebounded even more that my lymphocytes are .4, still below the .5, however my ANC is at 2.4 which is the best it's been in awhile and far from that 1.5 mark, so the combo again has me avoiding the Peg reduction. So I am back on regular dosage all around this week.
The REALLY good news is what came out of the consultation with my doctor. I put my perspective to him that I considered that 7 days riba reduction at this point was tolerable but no more..and that I considered that "as much of the drugs as much of the time" made ALOT of sense to me and that I wanted no further dosage reductions, as much firepower as I could get for as much of the time and if I COULD get it, why wouldn't I. And I asked him finally.. "does that make sense to you?" and I braced myself for rebuttals and other sorts of things...and his answer was simply .. "Yes." Just...yes.
And THEN .. we discussed the rescue drugs. Well, we discussed the epo.
The trial parameters say I MUST have a dosage reduction if my limits drop below a certain amount. So my hep doctor has decided to be proactive with that and keep me OUT of the dosage reduction range by putting me on epo for the duration until my hemoglobin gets above 12. Because I will have no choice but to dose reduce.. then we make sure I don't have to dose reduce. I will do weekly epo, weekly blood tests. So we are being proactive and practicing avoidance of dosage reduction.
I found an article about a study that Dr. Dieterich did supporting the idea of using epo to keep hgb at a level that would avoid ribavirin dosage reductions and it supports this approach.
http://www.natap.org/2001/ddw/ddw_4.htm
If I wasn't in the trial, we could do the epo first and wait out the expected 3 week or so response time. Because of the trial parameters, I need to keep it from getting below those levels in the first place.
I am VERY happy. I have a strategy in place to help me avoid dosage reductions, a doctor who listens and is aggressive and uses a proactive approach that is in MY best interests and sits well with what is important to ME in my treatment and will help me both stay in the trial and maintain my dosage to the best of my ability on both counts, both of which are important to me.
Now...my iron is low. So he is putting me on iron at the same time as the epo as he says the epo will be less effective with my iron at that level. That has me curious but I'll take it...and will continue to read more about that. (Nod to Willy)
As for my white levels.. my doc isn't crazy about neupogen, has mixed feelings about it's usefulness and figures the epo will help enough to keep my whites out of reduction range too. I'll cross that bridge IF I get to it. I'm happy with what I've gotten out of today and I'll just enjoy that very much and go with what I've got and continue to ride it out.
So far so good. Thankful for a doc who is willing to think outside of the box and what is good for MY big picture. And thankful for my trial co-ordinator who has put up with me this week, listened to me and let me step through all this and had me see this particular doctor.
Still might end up with the dosage reductions and that is out of anybody's control. However, we're all doing everything we can and that's all I really wanted. I'm at Week 18 today...and moving forward. Starting epo next week.
It sounds like a good plan to me. If any cautions...throw 'em at me.
Thanks again to *everybody* who tossed things into the pot...I took ALL the big and little pieces into account and it helped me think through this whole thing and educated me enough to know what I felt was best for me.
A BIG glass of soda water and lime raised to ALL of you!!
Trish
I called my trial co-ordinator earlier this week, let her know how I felt..that I was okay with 7 days riba reduction and after that, not and certainly no Peg reduction separately or on top of it. I asked her to let me do the blood test mid week this week as 7 days lands today and results would be back by our appt and then I'd know by today if I could go back to normal dose. She agreed. Thank you. I also let her know I wanted a serious consideration of rescue drugs and where they fit into my picture so that I could avoid future dosage reductions. She agreed to pass my request on to the doctor and arranged for me to consult with him today. What I found out TODAY was that she put me with the doc who is known to be the most aggressive on purpose. Bless her.
So today...my hgb is back above 10 at 10.8. My whites have rebounded even more that my lymphocytes are .4, still below the .5, however my ANC is at 2.4 which is the best it's been in awhile and far from that 1.5 mark, so the combo again has me avoiding the Peg reduction. So I am back on regular dosage all around this week.
The REALLY good news is what came out of the consultation with my doctor. I put my perspective to him that I considered that 7 days riba reduction at this point was tolerable but no more..and that I considered that "as much of the drugs as much of the time" made ALOT of sense to me and that I wanted no further dosage reductions, as much firepower as I could get for as much of the time and if I COULD get it, why wouldn't I. And I asked him finally.. "does that make sense to you?" and I braced myself for rebuttals and other sorts of things...and his answer was simply .. "Yes." Just...yes.
And THEN .. we discussed the rescue drugs. Well, we discussed the epo.
The trial parameters say I MUST have a dosage reduction if my limits drop below a certain amount. So my hep doctor has decided to be proactive with that and keep me OUT of the dosage reduction range by putting me on epo for the duration until my hemoglobin gets above 12. Because I will have no choice but to dose reduce.. then we make sure I don't have to dose reduce. I will do weekly epo, weekly blood tests. So we are being proactive and practicing avoidance of dosage reduction.
I found an article about a study that Dr. Dieterich did supporting the idea of using epo to keep hgb at a level that would avoid ribavirin dosage reductions and it supports this approach.
http://www.natap.org/2001/ddw/ddw_4.htm
If I wasn't in the trial, we could do the epo first and wait out the expected 3 week or so response time. Because of the trial parameters, I need to keep it from getting below those levels in the first place.
I am VERY happy. I have a strategy in place to help me avoid dosage reductions, a doctor who listens and is aggressive and uses a proactive approach that is in MY best interests and sits well with what is important to ME in my treatment and will help me both stay in the trial and maintain my dosage to the best of my ability on both counts, both of which are important to me.
Now...my iron is low. So he is putting me on iron at the same time as the epo as he says the epo will be less effective with my iron at that level. That has me curious but I'll take it...and will continue to read more about that. (Nod to Willy)
As for my white levels.. my doc isn't crazy about neupogen, has mixed feelings about it's usefulness and figures the epo will help enough to keep my whites out of reduction range too. I'll cross that bridge IF I get to it. I'm happy with what I've gotten out of today and I'll just enjoy that very much and go with what I've got and continue to ride it out.
So far so good. Thankful for a doc who is willing to think outside of the box and what is good for MY big picture. And thankful for my trial co-ordinator who has put up with me this week, listened to me and let me step through all this and had me see this particular doctor.
Still might end up with the dosage reductions and that is out of anybody's control. However, we're all doing everything we can and that's all I really wanted. I'm at Week 18 today...and moving forward. Starting epo next week.
It sounds like a good plan to me. If any cautions...throw 'em at me.
Thanks again to *everybody* who tossed things into the pot...I took ALL the big and little pieces into account and it helped me think through this whole thing and educated me enough to know what I felt was best for me.
A BIG glass of soda water and lime raised to ALL of you!!
Trish
Thanks for your care. I'm not letting up. I'm going after the rescue drugs and I'll be fighting them on dosage reduction. I got Dr. Dieterich's answer to when dosage reduction is preferred over rescue drugs when rescue drugs are available and he said "never!". I'm going to do everything I can to stay the course ... and if I get the sense that they are not doing what's best for me when they CAN be doing what's best for me, THAT is where I'll draw the line on staying in the trial.
Take care and thanks.
Trish
Take care and thanks.
Trish
" I have good markers so far .. and I think I can ride it all the way to SVR here. "
Trish, your markers are good but they are not great. You did not get RVR, so pleeeeeeze don't let up on getting your full dose of drugs and also the rescue drugs that you need. It's reeeeeally important!
We who didn't make it to SVR have had a long time to contemplate such things.
dointime
Trish, your markers are good but they are not great. You did not get RVR, so pleeeeeeze don't let up on getting your full dose of drugs and also the rescue drugs that you need. It's reeeeeally important!
We who didn't make it to SVR have had a long time to contemplate such things.
dointime
Sorry .. you asked about iron a number of times. I asked the trial co-ord about that and she said they're not monitoring that right now as it's not something they're concerned about. My iron had been on the high side earlier in the trial but not a concerning amount, just a puzzle to her. She said we would discuss it on Friday if iron was something they need to be looking at. I'm reading up a bit on creatinin clearance and I'm looking into those trough levels you keep mentioning. I have the rest of the week til I go to keep reading up and get my information.
I noted Dr. Dieterich's response...that when rescue drugs are available, a dosage reduction is NEVER in order over a rescue drug. So...I'll have some questions for my team.
Thanks for all your input, Willy...I like a man who can make me think. ;-> And thanks for your support. Appreciated.
Trish
Trish
I noted Dr. Dieterich's response...that when rescue drugs are available, a dosage reduction is NEVER in order over a rescue drug. So...I'll have some questions for my team.
Thanks for all your input, Willy...I like a man who can make me think. ;-> And thanks for your support. Appreciated.
Trish
Trish
To qualify ...
"I'm convinced my riba dosage is more appropriate at 1200mg. Not enough evidence out on "true" weight based dosing to settle at 1000mg and plenty of evidence out on the importance of riba in this whole process. Interesting comprehensive article on all of this. I found it very good reading:
http://www.natap.org/2007/HCV/100307_03.htm "
There's "true" weight based dosing that applies dosage graduating upwards with weight categories and then standard weight based dosing that goes with 1000mg for <75kg and 1200mg for <75 kg.
While there's plenty of evidence for weight based dosing vs flat dosing, IMHO not enough studies on the dosages laid out in "true" WBD to bank my dosage on that 1000mg mark and I'll take 1200mg, or higher, thank you very much.
Trish
"I'm convinced my riba dosage is more appropriate at 1200mg. Not enough evidence out on "true" weight based dosing to settle at 1000mg and plenty of evidence out on the importance of riba in this whole process. Interesting comprehensive article on all of this. I found it very good reading:
http://www.natap.org/2007/HCV/100307_03.htm "
There's "true" weight based dosing that applies dosage graduating upwards with weight categories and then standard weight based dosing that goes with 1000mg for <75kg and 1200mg for <75 kg.
While there's plenty of evidence for weight based dosing vs flat dosing, IMHO not enough studies on the dosages laid out in "true" WBD to bank my dosage on that 1000mg mark and I'll take 1200mg, or higher, thank you very much.
Trish
I'm going to stick with the trial and ride it out pending further information. I want them to tell me how the trial data still applies after pulling it at 12 weeks, etc. I also want them to explain to me why we're not using rescue drugs when it's permitted, so that if an INF reduction comes or this riba reduction continues much longer, I'll know where rescue drugs fit into my picture. Personally, I"m not against using them on my own if I can get them. That doesn't contravene the trial. And I'm thinking on that.
Even if I wasn't sticking with the trial, I can't switch docs and get drugs ordered fast enough to keep things uninterrupted. It doesn't happen that fast here in Canada, that I know of but haven't ruled it out. There are a couple of docs I'd be willing to contact if I thought things warranted it, I've left the door open for that a tiny bit but it's very tiny.
I'm convinced my riba dosage is more appropriate at 1200mg. Not enough evidence out on "true" weight based dosing to settle at 1000mg and plenty of evidence out on the importance of riba in this whole process. Interesting comprehensive article on all of this. I found it very good reading:
http://www.natap.org/2007/HCV/100307_03.htm
From everything I've read, due to being UND early on at the 6 week mark and it being past Week 12 at least when the reduction comes, at Week 17, and the reduction being above that 80% mark Willy mentioned, I can tolerate it for 7 days. I see them on the 7th day. They will extend until the blood test results come back and I don't get them until after that appointment. However. I have a standing order for weekly blood tests and I'm going to go in this week and get my blood test done anyway. I'll just play dumb and say I thought I was supposed to go in. I get them locally. It will be there by Friday and we'll all know whether I need to continue with a dosage reduction or not. They're going to keep it going, so if I have results that show otherwise, I might be able to put a stop to it. I also run the risk of the whites being low enough for them to order an INF reduction, but I'm ready to deal with that.
Will increase my folic acid and add shiitake lentinin to the mix.. pure lentinin if I can get it, or shiitakes...more is not more with them apparently, so I'll be reading up more on that to get the right "dosage" so to speak. They are for helping the white counts. Susan400 has mentioned that in the past and it seems there is data to back that up.
http://www.mskcc.org/mskcc/html/69279.cfm
Ongoing, I"ll take this a step at a time. I'm committed to the trial, I'm just going to fight a little harder for them to see me as more than a trial number, get more info and do what I can to get my reds and whites up. I'm almost at Week 24 and then I'll rest easier about these sorts of things. I still wouldn't want dosage reductions, however they'll be less critical by then, in my opinion. So I just want to see what I can do to stay the course all around and get there.
There's fighting my own dragon and there's fighting the dragon period. So I just prefer to stick with the trial and ride it out. I have good markers so far .. and I think I can ride it all the way to SVR here.
I'm sorry for all the fuss when it could improve and stay that way ... I wasn't expecting the dosage reduction on the ribavirin after staving off the INF reduction every week ... it's clear you can't afford to be complacent about these things and you need to know what you'll do if things do tank, whether a little or a lot. So now I know.
Will see how it goes. Thank you much to everybody.
Trish
Even if I wasn't sticking with the trial, I can't switch docs and get drugs ordered fast enough to keep things uninterrupted. It doesn't happen that fast here in Canada, that I know of but haven't ruled it out. There are a couple of docs I'd be willing to contact if I thought things warranted it, I've left the door open for that a tiny bit but it's very tiny.
I'm convinced my riba dosage is more appropriate at 1200mg. Not enough evidence out on "true" weight based dosing to settle at 1000mg and plenty of evidence out on the importance of riba in this whole process. Interesting comprehensive article on all of this. I found it very good reading:
http://www.natap.org/2007/HCV/100307_03.htm
From everything I've read, due to being UND early on at the 6 week mark and it being past Week 12 at least when the reduction comes, at Week 17, and the reduction being above that 80% mark Willy mentioned, I can tolerate it for 7 days. I see them on the 7th day. They will extend until the blood test results come back and I don't get them until after that appointment. However. I have a standing order for weekly blood tests and I'm going to go in this week and get my blood test done anyway. I'll just play dumb and say I thought I was supposed to go in. I get them locally. It will be there by Friday and we'll all know whether I need to continue with a dosage reduction or not. They're going to keep it going, so if I have results that show otherwise, I might be able to put a stop to it. I also run the risk of the whites being low enough for them to order an INF reduction, but I'm ready to deal with that.
Will increase my folic acid and add shiitake lentinin to the mix.. pure lentinin if I can get it, or shiitakes...more is not more with them apparently, so I'll be reading up more on that to get the right "dosage" so to speak. They are for helping the white counts. Susan400 has mentioned that in the past and it seems there is data to back that up.
http://www.mskcc.org/mskcc/html/69279.cfm
Ongoing, I"ll take this a step at a time. I'm committed to the trial, I'm just going to fight a little harder for them to see me as more than a trial number, get more info and do what I can to get my reds and whites up. I'm almost at Week 24 and then I'll rest easier about these sorts of things. I still wouldn't want dosage reductions, however they'll be less critical by then, in my opinion. So I just want to see what I can do to stay the course all around and get there.
There's fighting my own dragon and there's fighting the dragon period. So I just prefer to stick with the trial and ride it out. I have good markers so far .. and I think I can ride it all the way to SVR here.
I'm sorry for all the fuss when it could improve and stay that way ... I wasn't expecting the dosage reduction on the ribavirin after staving off the INF reduction every week ... it's clear you can't afford to be complacent about these things and you need to know what you'll do if things do tank, whether a little or a lot. So now I know.
Will see how it goes. Thank you much to everybody.
Trish
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