Aa
Week 2 VR - good news and bad
Got my 2nd VR and got another log drop! One per week!
baseline 3,020,000
week 1 - 277,000
week 2 - 8,720
My bad news is that the R1626 Trial masters have saddled me with a 25% dose reduction on my Pegasys! Sort of brought me down a bit as I am just going into week 4 and want to keep things optimized to attain a 4wk RVR. A bit disconcerting.
Neutrophils have dropped a bit but as my study nurse explained, the Trial tends to be conservative with monitoring / dose reductions - especially with Neutrophils and R1626.
Neutrophils: ref range 40.9 - 77.0 %
week 1 - 42.9
week 2 - 37.8
Neutorphils, ABS: ref range 2.03 - 8.36 x10E9/L
week 1 - 2.02
week 2 - 1.25
WBC,HEMO,HEMOCRIT,+ RBC have all dropped slightly to just at the cusp of their respective low ref range.
The Question? What can I do to elevate Neut's. I am still trying to put together in my mind all the different factors that is the cats cradle of this treatment and I would like to keep things optimized as much as is in my hands to get an eventual SVR. I know being in a Trial takes some of it out of my hands but I knew that going in.
What is so counter intuitive is that through my TX so far I have been feeling relatively good. I have been able to keep up my usual swimming regime and the biggest SX's so far has been night sweats and a moderate Sunday fatigue - 2 days after my peg injection. The treatment can be as insidious as the Virus?
Sorry if this is more appropriate to the HepC forum.
cheers
B
baseline 3,020,000
week 1 - 277,000
week 2 - 8,720
My bad news is that the R1626 Trial masters have saddled me with a 25% dose reduction on my Pegasys! Sort of brought me down a bit as I am just going into week 4 and want to keep things optimized to attain a 4wk RVR. A bit disconcerting.
Neutrophils have dropped a bit but as my study nurse explained, the Trial tends to be conservative with monitoring / dose reductions - especially with Neutrophils and R1626.
Neutrophils: ref range 40.9 - 77.0 %
week 1 - 42.9
week 2 - 37.8
Neutorphils, ABS: ref range 2.03 - 8.36 x10E9/L
week 1 - 2.02
week 2 - 1.25
WBC,HEMO,HEMOCRIT,+ RBC have all dropped slightly to just at the cusp of their respective low ref range.
The Question? What can I do to elevate Neut's. I am still trying to put together in my mind all the different factors that is the cats cradle of this treatment and I would like to keep things optimized as much as is in my hands to get an eventual SVR. I know being in a Trial takes some of it out of my hands but I knew that going in.
What is so counter intuitive is that through my TX so far I have been feeling relatively good. I have been able to keep up my usual swimming regime and the biggest SX's so far has been night sweats and a moderate Sunday fatigue - 2 days after my peg injection. The treatment can be as insidious as the Virus?
Sorry if this is more appropriate to the HepC forum.
cheers
B
Hi Laurie,
Welcome. Your experience is very enlightening. I am just in week 6 and have the same dose reductions for Peg + Study drug (no riba reduct.) but have not had the drastic falls that you have experienced. My heart goes out to you. Glad to hear you are feeling better.
In my case they intervened very quickly:
- Pegasys reduction when neutophils came down to 12.5 (wk 2)
- study drug reduction when 3 days later when they dropped to only .99 (wk 3)
- current (week4) reading is .75.
So as you see they are being much more cautious with me. My platelets are low but no where near the dangerous level you reached. Currently I am at 83.
This week I am hoping to find out a more specific explanation as to why they are being so cautious in my particular case. So far I have just been told it is the Neutrophil #'s but I am curious if there are any other factors in my condition that are contributing to this approach.
Did they wait till your wk 4 and give you all the reductions at one time?
Again - glad to hear things are getting better. Also glad they didn't have to stop your treatment.
Let us know how things proceed.
cheers
B
Welcome. Your experience is very enlightening. I am just in week 6 and have the same dose reductions for Peg + Study drug (no riba reduct.) but have not had the drastic falls that you have experienced. My heart goes out to you. Glad to hear you are feeling better.
In my case they intervened very quickly:
- Pegasys reduction when neutophils came down to 12.5 (wk 2)
- study drug reduction when 3 days later when they dropped to only .99 (wk 3)
- current (week4) reading is .75.
So as you see they are being much more cautious with me. My platelets are low but no where near the dangerous level you reached. Currently I am at 83.
This week I am hoping to find out a more specific explanation as to why they are being so cautious in my particular case. So far I have just been told it is the Neutrophil #'s but I am curious if there are any other factors in my condition that are contributing to this approach.
Did they wait till your wk 4 and give you all the reductions at one time?
Again - glad to hear things are getting better. Also glad they didn't have to stop your treatment.
Let us know how things proceed.
cheers
B
Hi Trish! :)
For me this has already become a very long road and I'm only at 6 weeks.
My pre-tx counts where:
WBC - 6.5
Haemogloben - 15.4
Neutrophils - 64.1
Platelet - 246
These began to slowly drop during the first 2 weeks but then took a nose dive during the 3rd week.
By week 4 my counts became:
WBC -.09
Haemogloben - 6.0
Platlet - 14
Not sure which arm I'm in because it's double blinded. I've been reduced to 75 Peg. 4Riba's and they've change my taking the study drug to X& Y in am and Y&Z in pm.
All I know is that this is nasty stuff!!!
For me this has already become a very long road and I'm only at 6 weeks.
My pre-tx counts where:
WBC - 6.5
Haemogloben - 15.4
Neutrophils - 64.1
Platelet - 246
These began to slowly drop during the first 2 weeks but then took a nose dive during the 3rd week.
By week 4 my counts became:
WBC -.09
Haemogloben - 6.0
Platlet - 14
Not sure which arm I'm in because it's double blinded. I've been reduced to 75 Peg. 4Riba's and they've change my taking the study drug to X& Y in am and Y&Z in pm.
All I know is that this is nasty stuff!!!
Well you obviously found us Laurie, and that's fantastic, our little group is ever expanding. It is so cool that we can share notes and as a consequence influence our own tx decisions from being educated by others in the same trial. Welcome we should stay in touch. Regards Emi
Hi Laurie .. you say "long road" as if you've been on the trial for some time... those of us that I know are in this R1626 Phase IIb trial are only about 4 weeks in. Can you please explain more about where you're at?
I'm surprised you're getting rescue drugs and wondering if that's perhaps unique to you, because you absolutely needed them? How fast did your levels drop? A matter of weeks? What were your levels when you started?
If you're done the trial do you know what dosages of the trial drug you had? I did read that a very high percentage of those in the 3000mg group had very high rates of neutropenia, like upper 70%ile.
Would appreciate more info if you would, please. I'm glad to know you're doing much better now.
Regards,
Trish
I'm surprised you're getting rescue drugs and wondering if that's perhaps unique to you, because you absolutely needed them? How fast did your levels drop? A matter of weeks? What were your levels when you started?
If you're done the trial do you know what dosages of the trial drug you had? I did read that a very high percentage of those in the 3000mg group had very high rates of neutropenia, like upper 70%ile.
Would appreciate more info if you would, please. I'm glad to know you're doing much better now.
Regards,
Trish
Hi Everyone!
I have a new friend who posted this site on my blog so I thought I'd stop in to check it out.
I have the blog Binkyslife.blogspot.com
This trial has been a long road so far, but I'm doing much better now. :)
I think that they are starting to play with dosages more now than when the trial first started because too many of us crashed very very quickly. With me they didn't reduce anything until I was in a danger zone. I don't think that they meant to wait that long. I think that they thought I would level out and then when I continued to crash I think that they tried to put the breaks on it by stopping everything. It was too late, I continued to fall.
By the time the Procrit and Nuepogen arrived my WBC and Platelets had pretty much almost hit bottom.
Procrit acted pretty fast as it only had to nudge my bone marrow into releasing my WBC's. But the Nuepogen takes longer as it coaxes my body into making new Red Blood cells and Platelets. Thus the blood transfussion. My Platelet count had dropped to 14 and bleed out occurs at 10....we had no choice.
2 injections of Procrit and Nuepogen later and I am feeling sooo much better!
I go today for my 6 week bloodwork. I'm praying that my viral load is still undectable after all of this craziness!
But like I said, I think that Roche is now playing with dosages in order to find the right level to kill the virus and not the patient.
One more note. At the beginning of this trial Roche refussed to allow rescue drugs! As you can see from me....they changed their minds. Thank God because I really need to complete this thing.
My prayers are with you all.
God Bless
((Hugs))
Laurie
I have a new friend who posted this site on my blog so I thought I'd stop in to check it out.
I have the blog Binkyslife.blogspot.com
This trial has been a long road so far, but I'm doing much better now. :)
I think that they are starting to play with dosages more now than when the trial first started because too many of us crashed very very quickly. With me they didn't reduce anything until I was in a danger zone. I don't think that they meant to wait that long. I think that they thought I would level out and then when I continued to crash I think that they tried to put the breaks on it by stopping everything. It was too late, I continued to fall.
By the time the Procrit and Nuepogen arrived my WBC and Platelets had pretty much almost hit bottom.
Procrit acted pretty fast as it only had to nudge my bone marrow into releasing my WBC's. But the Nuepogen takes longer as it coaxes my body into making new Red Blood cells and Platelets. Thus the blood transfussion. My Platelet count had dropped to 14 and bleed out occurs at 10....we had no choice.
2 injections of Procrit and Nuepogen later and I am feeling sooo much better!
I go today for my 6 week bloodwork. I'm praying that my viral load is still undectable after all of this craziness!
But like I said, I think that Roche is now playing with dosages in order to find the right level to kill the virus and not the patient.
One more note. At the beginning of this trial Roche refussed to allow rescue drugs! As you can see from me....they changed their minds. Thank God because I really need to complete this thing.
My prayers are with you all.
God Bless
((Hugs))
Laurie
Week 2 results for me...sort of. My VL results haven't come in yet. My HGB has dropped from 12.9 last week to 11.2 this week. Still okay, just a bit of a drop in one week. The more significant drop is my WBC. It went from 4.10 to 0.89. That seems like a helluva drop to me. I knew I was alot more tired this week but wasn't sure if it was just me pushing the envelope a bit much or the drugs. I am bloody tired this week and yet still managing to push through quite a bit. In bed at 8pm two nights in a row is not my norm though!
They talked about possibly reducing my INF but they're not doing it yet. They're going to wait on further results from today's blood draw it seems, so my INF dosage for tmw holds.
How's things on your end? Emi? Any results yet?
Hope you're both well.
Trish
They talked about possibly reducing my INF but they're not doing it yet. They're going to wait on further results from today's blood draw it seems, so my INF dosage for tmw holds.
How's things on your end? Emi? Any results yet?
Hope you're both well.
Trish
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