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Dilemma about peg reduction - Would like your opinion
To all of you who read my post yesterday, platelets are down to 88 and doc wants me to reduce peg from 180 to 135 for tomorrows injection and then I will get another CBC Wed. He never called me back today so I could argue the point with him. He's a rat bastar@ We all know levels become a concern when they drop below 50 (which is what Roche states on their drug disclosure) and many you have continued tx with even lower levels. My level is not dangerously low yet and I think he's being to hasty with the peg reduction. I know this is putting you in an uncomfortable position but I am seriously considering doing the 180 and let the chips fall where they may. However, on the other hand if I drop another 30, knowing him he'll probably pull me off tx. If it were any of you, would you comply with the reduction at this point knowing it's important to hit this virus hard and fast, especially when it only the 8th shot? I'm having a hard time with this and again, I know it's not fair to ask this of you but I think I know what I'm going to do and just want you think.
Thank you and sorry to dump
Trinity
Thank you and sorry to dump
Trinity
That's been my thinking all along. I'm going for it this evening. Full 180 and he kiss my butt cause I'm so over it right now anyway. I've got a 2 months supply of peg & riba so if he pulls me off I have enough meds until I find another doc anyway. I know tough calls have to be made, believe me I get it. I just don't agree with him this time and I'll do what I think I have to do. Thank you everyone for your input. Last 24 hrs have been a little rough, not a lot of sleep and I've got to go to work. No worries.
Trinity
Trinity
Trinity
Your Doc is actually following the PegIntron guideline not Pegasys. Below is from the PegIntron Product Info Sheet. Why Roche and Schering have different values for this is anyones guess.
Guidelines for Dose Modification and Discontinuation of PegIntron or PegIntron/REBETOL for Hematologic Toxicity
...............................Lab Values.....PegIntron........................REBETOL
Platelets..................<80 x 10^9/L...Reduce dose by 50%
Platelets..................<50 x 10^9/L...Permanently discontinue..Permanently discontinue
150,000–400,000 platelets per mm3 or
150–400 x 109/Liter (SI units)
The PegasysPI and Peg-IntronPI use different measuring systems but are basically the same.
I can only say what I would do and this is I agree with Zazza and FLGuy. Take the full dose.
Then tell your Doc you must have had brain fog and injected the full dose before realising you only were supposed to do 135.
Then I would tell him about the PegIntron v Pegasys differences.
CS
Your Doc is actually following the PegIntron guideline not Pegasys. Below is from the PegIntron Product Info Sheet. Why Roche and Schering have different values for this is anyones guess.
Guidelines for Dose Modification and Discontinuation of PegIntron or PegIntron/REBETOL for Hematologic Toxicity
...............................Lab Values.....PegIntron........................REBETOL
Platelets..................<80 x 10^9/L...Reduce dose by 50%
Platelets..................<50 x 10^9/L...Permanently discontinue..Permanently discontinue
150,000–400,000 platelets per mm3 or
150–400 x 109/Liter (SI units)
The PegasysPI and Peg-IntronPI use different measuring systems but are basically the same.
I can only say what I would do and this is I agree with Zazza and FLGuy. Take the full dose.
Then tell your Doc you must have had brain fog and injected the full dose before realising you only were supposed to do 135.
Then I would tell him about the PegIntron v Pegasys differences.
CS
Having a relapser in the family, I second FlGuy's opinion: "pedal to the metal", full shot. That is what I would do. Us geno 1s have a hard enough time of clearing anyway.
I also agree with Hector that your baseline viral load is 1,290,000 IU/ml. A baseline viral load that is no more than half a year old is valid, according to my nurse.
I also agree with Hector that your baseline viral load is 1,290,000 IU/ml. A baseline viral load that is no more than half a year old is valid, according to my nurse.
Goofy: "sword"
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Thanks for the clarification. I'm sure many with low platelets are relieved they can still swallow their "swor's".
----------------------
Thanks for the clarification. I'm sure many with low platelets are relieved they can still swallow their "swor's".
I SVR'd with full dose and platelets that started at 112 and bounced between 45 and 75 for my entire tx (six months). Every time they took a walk down to the basement they cycled back up into safer territory. Every six weeks or so I thought I was due for a dose reduction (my doc's pucker point was 35), but I kept squeaking by.
If you hav low platelets, be sensible and don't do things that put at risk for injury. Ladders, swor swallowing and mumbly-peg are all out.
If you hav low platelets, be sensible and don't do things that put at risk for injury. Ladders, swor swallowing and mumbly-peg are all out.
let us concentrate on the current problem only. I think it is wise to do a dose reduction as there is nothing to raise platelets except tranfusion once they fall dangerously low as compared to WBC which can be raised by drugs.If somebody suggests to skip the dose at platelets of 50000 then I consider it same as dose reduction at 80000. I think your doc is right.
Ooops (post tx brain lock) you are stage 3. So you want to treat soon.
Then worst case...If this tx with this doctor doesn't work, find another doctor this year and go for it.
The sooner you treat the better chance you have of SVR.
Hector
Then worst case...If this tx with this doctor doesn't work, find another doctor this year and go for it.
The sooner you treat the better chance you have of SVR.
Hector
Trinity, Oh. I'm so sorry you’re in such a mess.
"He didn't believe in the 4 wk PCR" that would be funny if it wasn't so sad! A 6 week baseline? OMG. Scary! I'm so sorry you have to deal with this. Ridiculous!!!
Even though you had VL done on week 6 you don't know what your VL is now. I'm I correct?
Good news: Your baseline VL is 1,290,000. VL assays vary but basically VL averages out the same over time (even years).
So you know that you have to be down ABOUT 2 log (~13,000) by week 12 and hopefully UND by then. If you do that then you will do tx for 48 weeks.
OK, Worst case senerio (which isn't that bad really-easy for me to say)…you do this tx until week 12 and if you don't reach UND, stop, and wait to find another doc even if it takes time. Months, whatever. I'm sure you have plenty of time before stage 3 or 4. Right? Probably decades. Find a doc who will be your partner who will get you through the side effects. It's that what they are there for isn't it?
...Why do you think you're going to fail? You are making progress dispite your doctor's shortcomings. Not everyone could even deal with such poor patient management on your doctor's part. Everything you are doing now will help you in the future. (By the way. Get copies of all your labs. So if you need to find another doctor at some point they will have this current data as to how you respond to tx. And they will be prepared as much as possible for these platelet drops) I failed treatment a week ago. Not even dropping 2 log at week 12. But I know I can use all I learned this time when new therapies come out so it was all worth it. I gave it my best shot. My body doesn't respond to interferon. I have no control over that.
I've been so lucky to have great docs. I couldn't have asked for better support. When I hear these horror stories it is really upsetting because they should be there to support and care for us as we do the daily battle for months on end fighting with the many crasy, fustrating side effects.
Best of luck to you.
Don't let other people ignorance get you down. You will overcome virus either now or in the future. Remember no one can defeat us but ourselves. Stay strong!
Hector
"He didn't believe in the 4 wk PCR" that would be funny if it wasn't so sad! A 6 week baseline? OMG. Scary! I'm so sorry you have to deal with this. Ridiculous!!!
Even though you had VL done on week 6 you don't know what your VL is now. I'm I correct?
Good news: Your baseline VL is 1,290,000. VL assays vary but basically VL averages out the same over time (even years).
So you know that you have to be down ABOUT 2 log (~13,000) by week 12 and hopefully UND by then. If you do that then you will do tx for 48 weeks.
OK, Worst case senerio (which isn't that bad really-easy for me to say)…you do this tx until week 12 and if you don't reach UND, stop, and wait to find another doc even if it takes time. Months, whatever. I'm sure you have plenty of time before stage 3 or 4. Right? Probably decades. Find a doc who will be your partner who will get you through the side effects. It's that what they are there for isn't it?
...Why do you think you're going to fail? You are making progress dispite your doctor's shortcomings. Not everyone could even deal with such poor patient management on your doctor's part. Everything you are doing now will help you in the future. (By the way. Get copies of all your labs. So if you need to find another doctor at some point they will have this current data as to how you respond to tx. And they will be prepared as much as possible for these platelet drops) I failed treatment a week ago. Not even dropping 2 log at week 12. But I know I can use all I learned this time when new therapies come out so it was all worth it. I gave it my best shot. My body doesn't respond to interferon. I have no control over that.
I've been so lucky to have great docs. I couldn't have asked for better support. When I hear these horror stories it is really upsetting because they should be there to support and care for us as we do the daily battle for months on end fighting with the many crasy, fustrating side effects.
Best of luck to you.
Don't let other people ignorance get you down. You will overcome virus either now or in the future. Remember no one can defeat us but ourselves. Stay strong!
Hector
If it were me, I'd do the 180. From my experience as a relapser, my attitude the second time around was pedal to the metal - full effort. Platelets bounce around and likely will stabilize, at some point,
Hector,
Just to answer a few of your questions. He did a baseline back on 3/25. The PCR was ordered correctly but the lab (QUEST) screwed it up and indicated that the VL was above 750,000. That's all the information they had. They did a QUAL instead of a QUANT is what I'm thinking. Henceforth, I have no baseline to go by because I started tx on 3/28. VL back in Oct was 1,290,000. They didn't even let me know about this until my visit on 5/1. He told me he didn't believe in the 4 wk PCR and sent me for another PCR on 5/8 to use as a baseline. I'd already had six injections so there will never be an accurate number to gauge by!!! I still don't have the result from that yet. He has been doing the CBC every two weeks and I have consistently dropped around 30 each time. I honest to God think I was destined for failure from the beginning but I have to work with what I've got because changing docs at this point will be very difficult. And I guess some peg is better than no peg but it sure diminishes my chances of clearing .
Trinity
Just to answer a few of your questions. He did a baseline back on 3/25. The PCR was ordered correctly but the lab (QUEST) screwed it up and indicated that the VL was above 750,000. That's all the information they had. They did a QUAL instead of a QUANT is what I'm thinking. Henceforth, I have no baseline to go by because I started tx on 3/28. VL back in Oct was 1,290,000. They didn't even let me know about this until my visit on 5/1. He told me he didn't believe in the 4 wk PCR and sent me for another PCR on 5/8 to use as a baseline. I'd already had six injections so there will never be an accurate number to gauge by!!! I still don't have the result from that yet. He has been doing the CBC every two weeks and I have consistently dropped around 30 each time. I honest to God think I was destined for failure from the beginning but I have to work with what I've got because changing docs at this point will be very difficult. And I guess some peg is better than no peg but it sure diminishes my chances of clearing .
Trinity
This is a tough one...
What is your VL when last tested? At week 4.(?) Where was it when you started? If you are already UND it shouldn't be a problem reducing PEG because you have a 90% chance of SVR anyway. :-)
I don't know your relationship with the Doctor. Gastro or Hepatologist. For them 88 is low. For other doctors it is not. (They do have to protect themselves. If you have future problems because of platelets they figure you could sue them. They are not suppose to cause more harm than good, don’t forget). Not that I agree with reducing PEG. I don't! I'm just looking at it from their point of view.
Another doc would be the solution for both now and future..
Can you find another doctor who might have a different idea about your platelets being low?
You could reduce this time and your platelets will probably go up BUT I would think during your remaining tx time your platelets are going to drop below 88 sometime anyway!!!
And probably RBC and WBC are going to drop too! What's your current doc going to do then?
Hopefully someone else will have some ideas that may help you.
Best of luck!
Hector
What is your VL when last tested? At week 4.(?) Where was it when you started? If you are already UND it shouldn't be a problem reducing PEG because you have a 90% chance of SVR anyway. :-)
I don't know your relationship with the Doctor. Gastro or Hepatologist. For them 88 is low. For other doctors it is not. (They do have to protect themselves. If you have future problems because of platelets they figure you could sue them. They are not suppose to cause more harm than good, don’t forget). Not that I agree with reducing PEG. I don't! I'm just looking at it from their point of view.
Another doc would be the solution for both now and future..
Can you find another doctor who might have a different idea about your platelets being low?
You could reduce this time and your platelets will probably go up BUT I would think during your remaining tx time your platelets are going to drop below 88 sometime anyway!!!
And probably RBC and WBC are going to drop too! What's your current doc going to do then?
Hopefully someone else will have some ideas that may help you.
Best of luck!
Hector
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