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
They certainly must be using different criterion for neuts in your trial, or I'm reading the numbers wrong, because I've never heard of a Peg dose reduction with Abs Neuts over 1000 and yours seem to be 1250. Mine, for example, dropped to 325 and I didn't have my meds reduced. That said, a trial is a trial and I *assume* they hve reasons, but if it were me, I'd still querry my NP (or better yet the doctor) on why they're reducing my Peg when even the most conservative protocols wait until Neuts fall below 1000, and while most protocols wait until at least 500. Can't hurt to ask -- not just for the sake of an explanation, but because sometimes mistakes are made.
-- Jim
-- Jim
Thanks for the points of reference. I will most certainly be pursuing this farther. It is good to have some examples for discussion with NP / Doc. It is the sort of info that I find difficult to search /discover. With all the various factors to consider, I am sure there are not any standard protocols or had numbers for dose reductions.
I just need to fight for my best chance.
There is so much to learn...
thanx
B
I just need to fight for my best chance.
There is so much to learn...
thanx
B
B., your drops are encouraging! I'll get my first week results this Friday, I think I'll practically pee myself waiting for the information. And maybe from drinking all this water...although I'm not drinking enough just yet but still!
I'm a bit surprised they're dropping your Peg too actually .. I know far less than Jim but I recall reading the conditions of the earlier trial and your percentage is in line with the 1500mg dosage at the last trial and a bit below on your latest week. Maybe they're aiming to have it lower than that and they had it worked into the protocol all along but just not spelled out clearly. I'll ask when I go in what situation would need to exist to warrant a dose reduction. See if the information you get and the information I get are the same.
I'm not having any sides myself, B. I did forgo the running though, for now. Going to get through the first four weeks and then see how I make out on that 4 week PCR. I'm walking instead..walking to work everyday to make up for it a bit. Other than that...nothing really and I have enough energy to keep on working and go out in the evening, etc. You're further along than me and still really nothing coming your way. Interesting. We shall see.
I'm glad it's going well for you...will be interested to know how things turn out on your Peg enquiry. Good luck with that.
Trish
I'm a bit surprised they're dropping your Peg too actually .. I know far less than Jim but I recall reading the conditions of the earlier trial and your percentage is in line with the 1500mg dosage at the last trial and a bit below on your latest week. Maybe they're aiming to have it lower than that and they had it worked into the protocol all along but just not spelled out clearly. I'll ask when I go in what situation would need to exist to warrant a dose reduction. See if the information you get and the information I get are the same.
I'm not having any sides myself, B. I did forgo the running though, for now. Going to get through the first four weeks and then see how I make out on that 4 week PCR. I'm walking instead..walking to work everyday to make up for it a bit. Other than that...nothing really and I have enough energy to keep on working and go out in the evening, etc. You're further along than me and still really nothing coming your way. Interesting. We shall see.
I'm glad it's going well for you...will be interested to know how things turn out on your Peg enquiry. Good luck with that.
Trish
I seem to remember somebody saying that if you exercise by running up and down the hospital stairs for 15 mns prior to your blood draw then your neuts will be elevated temporarily for that test. Check it out.
Neuts are not like RBC, they can jump around a lot. You may find that they are fine at the next test, so it's unfortunate that the doc is acting so swiftly to reduce your peg.
A better question you might ask would be how to steer clear of bacterial infection while your neuts are low. You feel fine now but that won't be the case if a bacteria takes hold in your immuno-compromised system. For that reason, I never went to the swimming pool for the whole of my tx. At one point I even walked around wearing a surgical mask because I was so freaked about catching an infection. Now this might have been an extreme approach, however people have been taken down and out of tx because of runaway infection, so you do need to be aware of this risk.
dointime
Neuts are not like RBC, they can jump around a lot. You may find that they are fine at the next test, so it's unfortunate that the doc is acting so swiftly to reduce your peg.
A better question you might ask would be how to steer clear of bacterial infection while your neuts are low. You feel fine now but that won't be the case if a bacteria takes hold in your immuno-compromised system. For that reason, I never went to the swimming pool for the whole of my tx. At one point I even walked around wearing a surgical mask because I was so freaked about catching an infection. Now this might have been an extreme approach, however people have been taken down and out of tx because of runaway infection, so you do need to be aware of this risk.
dointime
PS - wounds take ages to heal on tx as well, so there's that much more chance for them to get infected. Cover spots and scratches with antibiotic cream and a dressing.
The kind of infections that seem to plague tx'ers are ear / nose / throat / tooth & gum and general septicaemia
doin
The kind of infections that seem to plague tx'ers are ear / nose / throat / tooth & gum and general septicaemia
doin
"In conclusion, neutropenia (low neutrophils) is frequent during treatment of hepatitis C with interferon and ribavirin, but it is not commonly associated with infections. These results suggest that patients with constitutional neutropenia probably can be treated safely and may not require dose modification. These findings support a revision of current criteria for exclusion and dose modification based on white blood cell counts in the treatment of hepatitis C. These modifications would expand the proportion of patients who could receive interferon-based therapy for hepatitis C. Because this was a descriptive study of limited sample size, it did not allow for identification of a specific cutoff value for neutrophils that can be considered safe. However, in the absence of other risk factors for bacterial infection, neutrophil counts of as low as 500 cells/µL are likely to be safely tolerated during interferon therapy. These criteria need to be validated in larger, prospective clinical trials.
http://www.hcvadvocate.org/hepatitis/hepC/Neutropenia.html
http://www.hcvadvocate.org/hepatitis/hepC/Neutropenia.html
Trish - armed with more knowledge, it will be interesting to compare their postion on this. It could be as you suggest and my study nurse suggested, they may have adopted a more conservative position on this for this Trial. I can't imagine it is just the discretion of the study doc? I'll see what I can pry from them.
I am glad to hear you are doing well still. I understand your forgoing the run for now on a weight and see. I hope the walking is enough for you - I know it is not quite the same.
doin - Yeah my study nurse suggested the exercise just before the blood tests. I had heard before that exercise helps elevate Neuts and I have been doing my 60 length swim the night before every test, but I didn't realize it was effective for the immediate time before the blood draw. How fickle :) The NP also suggested that weight bearing exercise is the best and that the neuts are released from the bone?
I have been very conscious about exposure to infection but this has presented a point to take a second look. I hear what you are saying about swimming pools. It for ever amazes me how filthy people can be... well at least in the mens room ;) It is a hard balance to weigh as swimming has become an important balance to work for me. I may also have to do more walks. It just doesn't fit well after a 12hr day this time of year when it is still dark in the evening. But brighter nights and tennis season is just around the corner!
Jim thanks for bringing up that report. I read it before starting the trial but at that point I was cramming so much info into my head about all this I forgot the central point. I'll have another read. And may take it with to my next meeting.
thanks all
this is such a wealth
cheers
B
I am glad to hear you are doing well still. I understand your forgoing the run for now on a weight and see. I hope the walking is enough for you - I know it is not quite the same.
doin - Yeah my study nurse suggested the exercise just before the blood tests. I had heard before that exercise helps elevate Neuts and I have been doing my 60 length swim the night before every test, but I didn't realize it was effective for the immediate time before the blood draw. How fickle :) The NP also suggested that weight bearing exercise is the best and that the neuts are released from the bone?
I have been very conscious about exposure to infection but this has presented a point to take a second look. I hear what you are saying about swimming pools. It for ever amazes me how filthy people can be... well at least in the mens room ;) It is a hard balance to weigh as swimming has become an important balance to work for me. I may also have to do more walks. It just doesn't fit well after a 12hr day this time of year when it is still dark in the evening. But brighter nights and tennis season is just around the corner!
Jim thanks for bringing up that report. I read it before starting the trial but at that point I was cramming so much info into my head about all this I forgot the central point. I'll have another read. And may take it with to my next meeting.
thanks all
this is such a wealth
cheers
B
B., I will look forward to comparing notes with you. I do know they are stringently monitoring the WBC throughout. Regardless...you're doing very well and off to a very good start for only two weeks in. Here's hoping for you. Your stats are encouraging to me as I'm at 2.1 mil, lower than you. So I'm hoping for much the same.
The weather is gorgeous here this morning. Yesterday was pure, unadulterated blizzard. The most snow we've had all winter and we've had alot. I walked home from work yesterday close to dinner hour and it was up to my thighs in some places and up to my knees in others...on the sidewalks! The rest of the way was solid trudging. I had intended to go back to work but I found that I couldn't get my car out of the driveway and there was way too much shovelling to be done to make that happen so I gave up and stayed in .. too late to walk there and back again. Today, I woke up to the whirring, beeping and grading sound of snowblowers and snowplows...music. :) The sun is out, the snow has stopped.. and this is what winter is all about...resilience, a sense of community and beauty. I walked to work again - easier to walk than drive - the sun is out, many sidewalks are plowed clear, the air is crisp, cold and clean and it's just simply a beautiful fantastic day here. Thanked my neighbours who were out for plowing their sidewalks...interesting to see a bunch of us walking on the roads today where the sidewalks are still impassable.
No..the walking isn't the same as running...it still has the same meditative qualities but certainly not the same endorphin lift. Today would be an absolutely perfect day for a run..my most favourite conditions even over anything warm weather has to offer. As it is .. walking in it is a good consolation. It has it's own properties and the walk to and from work has some definite benefits to it mentally and physically.
Take care, B. Your smiley lights up the forum. :)
Trish
The weather is gorgeous here this morning. Yesterday was pure, unadulterated blizzard. The most snow we've had all winter and we've had alot. I walked home from work yesterday close to dinner hour and it was up to my thighs in some places and up to my knees in others...on the sidewalks! The rest of the way was solid trudging. I had intended to go back to work but I found that I couldn't get my car out of the driveway and there was way too much shovelling to be done to make that happen so I gave up and stayed in .. too late to walk there and back again. Today, I woke up to the whirring, beeping and grading sound of snowblowers and snowplows...music. :) The sun is out, the snow has stopped.. and this is what winter is all about...resilience, a sense of community and beauty. I walked to work again - easier to walk than drive - the sun is out, many sidewalks are plowed clear, the air is crisp, cold and clean and it's just simply a beautiful fantastic day here. Thanked my neighbours who were out for plowing their sidewalks...interesting to see a bunch of us walking on the roads today where the sidewalks are still impassable.
No..the walking isn't the same as running...it still has the same meditative qualities but certainly not the same endorphin lift. Today would be an absolutely perfect day for a run..my most favourite conditions even over anything warm weather has to offer. As it is .. walking in it is a good consolation. It has it's own properties and the walk to and from work has some definite benefits to it mentally and physically.
Take care, B. Your smiley lights up the forum. :)
Trish
Update
I got my 3 week VL back and another dose reduction! Yikes...
My study nurse called monday first with news my neutraphils had fallen yet again from my previous reading of 1250 to 990 and this required another dose reduction from the trial protocol. This time it is with the study drug - a one level reduction which doesn't tell me much as I could be getting anywhere from placebo to 1500mg of the r1626 drug. This follows my pegasys reduction started only last friday so if my neuts recover.
She called back later (hoping to make me feel better) with my VL - which is good!
It is down to 4,070 from baseline 3,020,000 which makes a 3 log drop in 3 weeks.
Unfortunately, with the dose reductions, I am not holding out much hope in getting a 4 week RVR. I test tommorrow. And will also try to find out more about the dose reduction criteria. It didn't make sense that they would give me another dose reduction without seeing any results from the first dose reduction with the pegasys.
Trish
Whoa - that was quite the snow dump you folk had. Yeh there is nothing like that calm, beautiful, clear sunshine that you often get following a tremendous storm. Coming through slaughter.
Some of the news footage was incredible. Reminded me of when I was a young lad in Winterpeg.... We have had laughably so little snow out here.
cheers
B
I got my 3 week VL back and another dose reduction! Yikes...
My study nurse called monday first with news my neutraphils had fallen yet again from my previous reading of 1250 to 990 and this required another dose reduction from the trial protocol. This time it is with the study drug - a one level reduction which doesn't tell me much as I could be getting anywhere from placebo to 1500mg of the r1626 drug. This follows my pegasys reduction started only last friday so if my neuts recover.
She called back later (hoping to make me feel better) with my VL - which is good!
It is down to 4,070 from baseline 3,020,000 which makes a 3 log drop in 3 weeks.
Unfortunately, with the dose reductions, I am not holding out much hope in getting a 4 week RVR. I test tommorrow. And will also try to find out more about the dose reduction criteria. It didn't make sense that they would give me another dose reduction without seeing any results from the first dose reduction with the pegasys.
Trish
Whoa - that was quite the snow dump you folk had. Yeh there is nothing like that calm, beautiful, clear sunshine that you often get following a tremendous storm. Coming through slaughter.
Some of the news footage was incredible. Reminded me of when I was a young lad in Winterpeg.... We have had laughably so little snow out here.
cheers
B
Since it is now just after midnight....I get my first week results today!!! I will ask about the protocol for dosage changes and what warrants it and see what information I get.
Hang in there, B. It's not the end of the world if you don't make RVR. It's not the only indicator of SVR. You have already met the 12 week requirement of the 2 log drop so treatment IS working for you and at 3 weeks already. You don't have to sweat that part out to your 12 week mark. I wish for RVR for you ... but really....the main goal is SVR. And I wish that for you more.
Trish
Hang in there, B. It's not the end of the world if you don't make RVR. It's not the only indicator of SVR. You have already met the 12 week requirement of the 2 log drop so treatment IS working for you and at 3 weeks already. You don't have to sweat that part out to your 12 week mark. I wish for RVR for you ... but really....the main goal is SVR. And I wish that for you more.
Trish
B., I asked the study nurse what the protocol says about dose reduction of Peg or Ribavirin. She said there is no protocol on those ... it's symptom driven and at the discretion of the doctor. The study drug may be another matter, which is what they're reducing on your 2nd reduction. So... perhaps there is room to negotiate on reduction of the SOC drugs?
My VL appears to have dropped far less than the others I've read so far, B. I've posted my results and you can check them if you want. I don't really understand them that well, she seems to be using different measurements than you have so I'll have to sort that out so that I understand this better ongoing. I have a chart to fill out for each week with all my results now... so if I can learn to interpret them better it will be very useful.
Hope you are doing well.
Trish
My VL appears to have dropped far less than the others I've read so far, B. I've posted my results and you can check them if you want. I don't really understand them that well, she seems to be using different measurements than you have so I'll have to sort that out so that I understand this better ongoing. I have a chart to fill out for each week with all my results now... so if I can learn to interpret them better it will be very useful.
Hope you are doing well.
Trish
How cool your in the same trial and can compare, push each other along!
Not too sure on the reducing you in all this, just sending cheer on words and glad your both doing well so far.
Stained...3 log drop is good! Have to read Trish's labs.
Keep it up you two :) RVR and/or SVR to you both.
P.S. I WANT some snow :(
LL...in sunny Fl!
Not too sure on the reducing you in all this, just sending cheer on words and glad your both doing well so far.
Stained...3 log drop is good! Have to read Trish's labs.
Keep it up you two :) RVR and/or SVR to you both.
P.S. I WANT some snow :(
LL...in sunny Fl!
My study nurse when I was in Prove 3, did some research on this since my Neut.'s were dropping and came up with eating Schitake (Sp.??) Mushrooms. They are supposed to be good for increasing your white cells. I bought some right away and started eating them in everything I could think of, soups, stir-fry's, salad's, etc. I was told to wash them well first. Anyhow, my white cells stabilized at first and then, actually increased by a couple of points. It certainly wouldn't hurt to try it.
Susan
Susan
So glad I saw this! Forgot I can start taking all my stuff again!! I take a liquid of mushrooms (several kinds) and a vitamin mixture, also liquid, that I get at health food store. And wheatgrass and all that stuff! I can start all that again!!
Thanks!
LL
Thanks!
LL
If you artificially inflate or deflate the results with other things, organic or not ... that skews the data, does it not? If you're not on a trial .. then it all goes. But on a trial, that's why limited rescue drugs, etc .. to keep the data pure .. yes?
That is just a food for thought thing .... and not about to tell anyone what to do on that. What a person decides for their health is their own choice.
That is just a food for thought thing .... and not about to tell anyone what to do on that. What a person decides for their health is their own choice.
I stopped all but just (trying) to eat well on tx. Didn't want to be doing things that detox the body, afraid of detoxing the drugs.
I figure a lot of things sway accurate results in trials, from the persons over all health, to your thoughts on alternative, supplements, etc. on tx , if they do pain meds, other meds and so on. Guess they just get as accurate as they can over all. My trial we were not allowed to do any herbs, alternative things. Near the end it hit me that I do a lot of herb tea's! Not sure how much that counts. Whatever a person does, wants to do, I'd say check with the Dr. first on any of it. Like I was about to start taking iron, than told here DON'T! Most wouldn't know that.
LL
I figure a lot of things sway accurate results in trials, from the persons over all health, to your thoughts on alternative, supplements, etc. on tx , if they do pain meds, other meds and so on. Guess they just get as accurate as they can over all. My trial we were not allowed to do any herbs, alternative things. Near the end it hit me that I do a lot of herb tea's! Not sure how much that counts. Whatever a person does, wants to do, I'd say check with the Dr. first on any of it. Like I was about to start taking iron, than told here DON'T! Most wouldn't know that.
LL
That's what I'd say ... check with the trial co-ordinator first ... then they have some knowledge and control over what variables get introduced. Incidentally, she told me today that we CAN have iron on our trial at their discretion if our HGB drops low enough..they'd do that before lowering the Riba, she said.
Just to reiterate, this was EATING Shitake Mushrooms, NOT taking any sort of a supplement. I was made aware by the trial nurse that I was not allowed to take any supplements during the trial, including fish oil. However, eating healthy things, like fish, oatmeal, Boost shakes, and Shitake Mushrooms (for my white cells), was allowed. I was not allowed to have any type of Grapefruit or Grapefruit juice on the trial.
Susan
Susan
I'm sure my mushrooms mixture (all srooms) wouldn't have been bad either. One of the few things I don't like is mushrooms, so I drink 'em :)
LL
LL
Sorry I am intermittent in my responses here. As I work long hrs on a computer, I try to limit its use on my off times.
My reg trial nurse was not there for my week 4 visit and the substitute has not been working on this specific trial so did not have any of the specifics on dose reduction protocols, but did know they were being specifically conservative following the WBC's for r1626. On the trial he has been working on - Albuferon - they don't look at dose reductions till neutriphils drop to around 500, more along SOC protocol ... as Jim mentioned above.
Although I was not explicitly instructed to not take supplements, I decided at the beginning not to take any and stick to healthy eating. As I am type II diabetic (borderline - and no thanks to HCV?) it has meant only some slight adjustments to my diet to liver friendliness, fat levels for riba etc. The other morning at breakfast I was thinking to myself - boy I eat alot of oatmeal - what a happy horse :) But I love it. I must say at this point my sweetheart has been a great support and is brilliant with helping me keep tabs on diet / nutrition. We will be looking into shitake mushrooms. What about porcini mushrooms, I much prefer them.
cheers
B
My reg trial nurse was not there for my week 4 visit and the substitute has not been working on this specific trial so did not have any of the specifics on dose reduction protocols, but did know they were being specifically conservative following the WBC's for r1626. On the trial he has been working on - Albuferon - they don't look at dose reductions till neutriphils drop to around 500, more along SOC protocol ... as Jim mentioned above.
Although I was not explicitly instructed to not take supplements, I decided at the beginning not to take any and stick to healthy eating. As I am type II diabetic (borderline - and no thanks to HCV?) it has meant only some slight adjustments to my diet to liver friendliness, fat levels for riba etc. The other morning at breakfast I was thinking to myself - boy I eat alot of oatmeal - what a happy horse :) But I love it. I must say at this point my sweetheart has been a great support and is brilliant with helping me keep tabs on diet / nutrition. We will be looking into shitake mushrooms. What about porcini mushrooms, I much prefer them.
cheers
B
The nurse at Mayo's specifically mentioned Shitake Mushrooms. I have no idea if the other mushrooms have the same properties for raising the white cells, or not. I just went ahead and got the Shitake's to hedge my bets so to speak. I found that some of the regular grocery stores didn't carry them but several of the local produce markets in my area had a bountiful supply of them.
Susan
Susan
Susan, I can see I'm being a bit anal about this...lol..a number of things could impact, couldn't they. If it was all THAT important, they'd give us a complete diet plan and ask us to write down what we ate every day, wouldn't they!!
Trish
Trish
We have a large asian community and fresh shitakes are available most everywhere. We do use them on occasion but not recently. Thanks for the tip. As I started with a fairly low WBC at baseline, I need all the help I can get and would like to avoid more dose reductions bettering my chances to beat this.
thanks
B
thanks
B
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