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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
Willy, thanks for the caution on the black box warnings. I have heard of them and read some and will read some more. Thanks for your encouragement. I'm not sure I'll make it with NO problems through 30 more weeks, however this is certainly a good step forward, isn't it. An interesting approach within the parameters of the trial still and I'm happy.
marcia, thanks for your thoughts. :)
fret, thanks for the vote of confidence my friend and thank you for caring. That means alot.
Susan - with this approach I get to stay in the trial AND stay within trial parameters. I'm very happy with that. I too have to pay for my drugs and that's a bit of a hardship with my son's university expenses at the moment, however I'll take it and work it out. Good luck to you and I'm hopeful for your upcoming results.
pK .. you give me far too much credit...lol :) That goes to the doc. All I knew going in was that I didn't want dosage reductions and why and that I'm allowed rescue drugs. I wasn't sure how to pull it all together and wanted to have the discussion with the doc. I hadn't considered he would give me eprex/procrit before my levels dropped too low. That was his idea and I was surprised and pleased. The nurse put me with the most aggressive doctor because she figured that was a good match for my own wishes and bless her for that. Yes, relieved....and having a very decent weekend so far...hope same for you. :)
Trish
marcia, thanks for your thoughts. :)
fret, thanks for the vote of confidence my friend and thank you for caring. That means alot.
Susan - with this approach I get to stay in the trial AND stay within trial parameters. I'm very happy with that. I too have to pay for my drugs and that's a bit of a hardship with my son's university expenses at the moment, however I'll take it and work it out. Good luck to you and I'm hopeful for your upcoming results.
pK .. you give me far too much credit...lol :) That goes to the doc. All I knew going in was that I didn't want dosage reductions and why and that I'm allowed rescue drugs. I wasn't sure how to pull it all together and wanted to have the discussion with the doc. I hadn't considered he would give me eprex/procrit before my levels dropped too low. That was his idea and I was surprised and pleased. The nurse put me with the most aggressive doctor because she figured that was a good match for my own wishes and bless her for that. Yes, relieved....and having a very decent weekend so far...hope same for you. :)
Trish
Hi Trish,
Wonderful news about your meeting! All seems to have fallen into place perfectly for you -- in a *trial* no less... You must have made quite a positive impression on the nurse for her to set you up with thee best doctor! It really does help to do your homework and come into appointments armed with knowledge and a plan -- for your doctor to follow closely :-)
I'm so glad you don't have to reduce the riba any more than you already have -- I know that thought did not at all sit well with you.
You must be feeling pretty relieved -- hope you're having a very nice relaxing weekend!
pK
Wonderful news about your meeting! All seems to have fallen into place perfectly for you -- in a *trial* no less... You must have made quite a positive impression on the nurse for her to set you up with thee best doctor! It really does help to do your homework and come into appointments armed with knowledge and a plan -- for your doctor to follow closely :-)
I'm so glad you don't have to reduce the riba any more than you already have -- I know that thought did not at all sit well with you.
You must be feeling pretty relieved -- hope you're having a very nice relaxing weekend!
pK
Sounds like a really good understanding doctor you talked to, at least he has a compromise plan for you that takes what you wanted in the first place and keeps you at a safer place with the addition of epo. I was wondering how this would end up for you. I knew you weren't gonna feel comfortable with that riba reduction, so I'm really glad you worked so hard at getting what you wanted and making your viewpoint heard. Just so you know, I don't know anything at all about epogen. If you get uncomfortable with that idea, I know you will come up with a back up plan. God Bless
Just do what you think is best for you. If you are comfortable with going outside of your trial for private care and can get the SOC w/rescue drugs, then go that route. If you're not comfortable with that, then follow the trial guidelines and hope and pray for the best. That's my advice for what it's worth!
My current trial allows rescue drugs after you've completed the first 29 days w/the study drug (which I now have) and are on SOC. I told my study nurse on Wed., "I want to do whatever it takes w/all available rescue drugs in order to avoid any dose reductions". "I told her that with my history of being unable to clear that I am emphatically requesting no dose reductions!" That's what I did and fortunately for me, it's within the trial guidelines. I will however have to get those rescue drugs through my private insurance and/or my own pocket. This is all if I'm even allowed to continue on w/the treatment, because it all depends on my results from my labs that were drawn last Wed. on July 2nd. If I'm still dropping a steady pace, she told me that they will recommend that I continue on w/treatment.
Susan400
My current trial allows rescue drugs after you've completed the first 29 days w/the study drug (which I now have) and are on SOC. I told my study nurse on Wed., "I want to do whatever it takes w/all available rescue drugs in order to avoid any dose reductions". "I told her that with my history of being unable to clear that I am emphatically requesting no dose reductions!" That's what I did and fortunately for me, it's within the trial guidelines. I will however have to get those rescue drugs through my private insurance and/or my own pocket. This is all if I'm even allowed to continue on w/the treatment, because it all depends on my results from my labs that were drawn last Wed. on July 2nd. If I'm still dropping a steady pace, she told me that they will recommend that I continue on w/treatment.
Susan400
Good to hear, excellent in fact!!! It looks like you are going to make it with no problems.
Just a warning...... since the link that you posted came out there have been new warnings on epogen; black label warnings. The drug is not without it's danger and it is not one that you want overprescribed. It is to be used as little as possible; just enough to keep you off the reduction list. This is a drug where less is more. Just check it out and don't let it be overprescribed or serious and long term problems can develop.
I'm glad that they checked your iron. If they get your iron up I think you anemia could improve and almost certainly they won't need as much epogen.
Great to hear this. It bodes well for your success.
best,
Willy
Just a warning...... since the link that you posted came out there have been new warnings on epogen; black label warnings. The drug is not without it's danger and it is not one that you want overprescribed. It is to be used as little as possible; just enough to keep you off the reduction list. This is a drug where less is more. Just check it out and don't let it be overprescribed or serious and long term problems can develop.
I'm glad that they checked your iron. If they get your iron up I think you anemia could improve and almost certainly they won't need as much epogen.
Great to hear this. It bodes well for your success.
best,
Willy
I am sooooo happy for you that it worked out this way. Someone above is taking good care of you. Congratulations!!!! Hugs, Marcia
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