It's nice to know some of us share a similar journey, but I hope not too similar. I got told on Friday my platelets and WBC were too low and I need neupogen, so I had to stop treatment at week three. We have to try to get patient assistance for neupogen now, but apparently there is no medicine to help with my platelets which are at 77*L, if they go below 70*L I have to stop treatment again, even with the neupogen. I feel so utterly lost and I have been so positive through this whole thing. I don't know what to do and I am more than a little scared. I hope there is someone out there who has gone through this and can help me understand what to do next. I am running low on hope and positivity. Good luck to all of you fighting this horrible virus. Lots of love to all.
Lara441983 said
Apr 30, 2012
Thank you for the sh*t, I needed someone to see it as sh*tty. It helped to read your comments and I wish you the best! I am just spinning today and maybe tomorrow I will feel uplifted again, who knows? I'm trying though, but today is just not my day. Lots of Love!
-- Edited by Lara441983 on Monday 30th of April 2012 07:59:16 PM
innerview said
Apr 30, 2012
SH**t! (excuse my language) I've heard that this can happen with some people -- having to stop treatment. Here, in Sweden, they do not use the neupogen or the procrit for low blood counts. My drs just keep lowering my Riba (now at 600mg day) and lowering my interferon dose (i've been at 90 -- a half dose-- for the past 3 injections) and slowly my numbers are increasing or at least stable.
Lara, I hope you get the assistance that you need to continue. But it can be dangerous if the blood counts get too low. You have to listen to your dr and nurse, they are there for your wellbeing. My nurse keeps telling me... if this doesn't work, not to worry, there are new treatments that are not far off. And I keep telling her, Oh God, I really don't want to do this twice!
I hope you can get that positive outlook back. It's not always easy, but it sure helps us get through this mess! I wish you all the best!
-- Edited by innerview on Monday 30th of April 2012 05:13:33 PM
mavenchick said
Apr 26, 2012
Heya Lara!
Yup, yup totally feeling you on a few counts there...
Low WBC... check Fairly healthy appetite... check No weight loss... check (bummer lolz) Not too run down... check
I know it's different on tx for everyone even though we do share a common journey :)
As far as the low neutrophils go I get tested bout every 2 weeks to monitor it. I got onset tonsillitis and was prescribed heavy duty antibiotics which kicked my butt! If you can manage without them I recommend it, but thats just a kind of 'adverse' reaction experience I had...
Just keep rolling with treatment roller-coaster, even on bad days its totally worth it!
Good luck
K
innerview said
Apr 26, 2012
Kellyw wrote:
In fact the real bummer is that my appetite while wildly different has not been bad. I may be the only person to go thru treatment and NOT lose weight.
In the first 12 weeks I've gained 7 lbs. I've had no problem with appetite either ... I'm eating all the time... but I do try to eat healthy food and healthy fat. Now that I am finished with the Telaprevir part of treatment, I expect that I may start to shed those extra pounds. Although the nurse thinks I am too thin and tells me to keep eating.
Peace, Mark
Kellyw said
Apr 26, 2012
hi,
I know what you mean about feeling ok. I did not have a dramatic reaction. I too have had low WBC since early in treatment . I have been on a shot (or two) a week to keep it up. For me not a big deal. At first I was surprised I didnt feel bad but some dont I guess. In fact the real bummer is that my appetite while wildly different has not been bad. I may be the only person to go thru treatment and NOT lose weight.
Take care. Keep an eye on your blood work. drink lots of water.
Lara441983 said
Apr 25, 2012
Thanks for moving the post to the correct area and thank you all for the info. I guess I was fearful low WBC could mess with my treatment and it is good to know that it will not. Thank you all so much, it helps since I don't see the Doctor till tomorrow. Lots of love to all!
innerview said
Apr 25, 2012
Hi Lara! Welcome! I understand your concern. I feel the same way. But here's my experience so far... I am on reduced interferon for low WBC. I have been on half dose (90) for the past 3 weeks, and was reduced to 135 in week 5 through 9. I just got my 12 week labs and I am UND. My WBC is up a bit so I will be increasing my interferon to 135 on Monday! I am still on reduced Riba (600mg day) for low RBC. I just finished with the Incivo/Incivek so dr says we should start to see a rise in both R/WBC and can start to increase Riba dose soon. The dr also said that the research is showing no decline in SVR with reduced doses for those categorized as Rapid Responders with Incivo. So I pray that that is true.
Mark
davesf said
Apr 25, 2012
Hi Lara,
Welcome and good luck with your treatment. Glad to hear you're feeling good so far. Some people have few or mild side effects. However your meds also have a cumulative build up effect in your system so it's not uncommon to get your side effects later or at anytime.
We all run the risk of low WBC (and red). Thats why we have our blood counts checked frequently. My WBC was at "low" week four and "Alert" week eight. We'll see what week twelve brings. You're lower than I am which is why you have to scale back the interferon. It's bad news but certainly not catastrophic. People in your situation keep treating and can reach SVR. Two things to do:
1) Repost under the On Treatment thread and you'll probably get responses from people in similar situation 2) Use the search link up top and key in "low white" There are several older threads on this topic.
Best, Dave
Cinnamon Girl said
Apr 25, 2012
Hi and welcome Lara! Please don`t feel guilty that you`re not feeling run down, just be thankful! We all like to hear that someone`s having an easier time.
All the best of luck with your treatment.
~ Jill xx
ps - I`m moving this thread to the `On Treatment` section.
-- Edited by Cinnamon Girl on Wednesday 25th of April 2012 10:10:35 AM
Lara441983 said
Apr 24, 2012
I am at week three of triple therapy and so far other than my first day things have been very easy for me. I read about all of your stories and I feel guilty that I don't feel run down. I'm so sorry to all of you that are feeling sick and tired. I wish you all the best.
I did just get bad news, however, and am unsure if it is bad, horrible or catastrophic. I was wondering if anyone has had a low white blood cell count and if so what happened next in their treatment. They said they are going to half my pegasys, but I am still worried about what the future can hold. Hopefully someone knows. Thanks everyone for reading. Good luck and lots of love to all.
It's nice to know some of us share a similar journey, but I hope not too similar. I got told on Friday my platelets and WBC were too low and I need neupogen, so I had to stop treatment at week three. We have to try to get patient assistance for neupogen now, but apparently there is no medicine to help with my platelets which are at 77*L, if they go below 70*L I have to stop treatment again, even with the neupogen. I feel so utterly lost and I have been so positive through this whole thing. I don't know what to do and I am more than a little scared. I hope there is someone out there who has gone through this and can help me understand what to do next. I am running low on hope and positivity. Good luck to all of you fighting this horrible virus. Lots of love to all.
Thank you for the sh*t, I needed someone to see it as sh*tty. It helped to read your comments and I wish you the best! I am just spinning today and maybe tomorrow I will feel uplifted again, who knows? I'm trying though, but today is just not my day. Lots of Love!
-- Edited by Lara441983 on Monday 30th of April 2012 07:59:16 PM
SH**t! (excuse my language) I've heard that this can happen with some people -- having to stop treatment. Here, in Sweden, they do not use the neupogen or the procrit for low blood counts. My drs just keep lowering my Riba (now at 600mg day) and lowering my interferon dose (i've been at 90 -- a half dose-- for the past 3 injections) and slowly my numbers are increasing or at least stable.
Lara, I hope you get the assistance that you need to continue. But it can be dangerous if the blood counts get too low. You have to listen to your dr and nurse, they are there for your wellbeing. My nurse keeps telling me... if this doesn't work, not to worry, there are new treatments that are not far off. And I keep telling her, Oh God, I really don't want to do this twice!
I hope you can get that positive outlook back. It's not always easy, but it sure helps us get through this mess! I wish you all the best!
-- Edited by innerview on Monday 30th of April 2012 05:13:33 PM
Yup, yup totally feeling you on a few counts there...
Low WBC... check
Fairly healthy appetite... check
No weight loss... check (bummer lolz)
Not too run down... check
I know it's different on tx for everyone even though we do share a common journey :)
As far as the low neutrophils go I get tested bout every 2 weeks to monitor it. I got onset tonsillitis and was prescribed heavy duty antibiotics which kicked my butt! If you can manage without them I recommend it, but thats just a kind of 'adverse' reaction experience I had...
Just keep rolling with treatment roller-coaster, even on bad days its totally worth it!
Good luck
K
In the first 12 weeks I've gained 7 lbs. I've had no problem with appetite either ... I'm eating all the time... but I do try to eat healthy food and healthy fat. Now that I am finished with the Telaprevir part of treatment, I expect that I may start to shed those extra pounds.
Although the nurse thinks I am too thin and tells me to keep eating.
Peace, Mark
hi,
I know what you mean about feeling ok. I did not have a dramatic reaction. I too have had low WBC since early in treatment . I have been on a shot (or two) a week to keep it up. For me not a big deal. At first I was surprised I didnt feel bad but some dont I guess. In fact the real bummer is that my appetite while wildly different has not been bad. I may be the only person to go thru treatment and NOT lose weight.
Take care. Keep an eye on your blood work. drink lots of water.
Thanks for moving the post to the correct area and thank you all for the info. I guess I was fearful low WBC could mess with my treatment and it is good to know that it will not. Thank you all so much, it helps since I don't see the Doctor till tomorrow. Lots of love to all!
I understand your concern. I feel the same way. But here's my experience so far...
I am on reduced interferon for low WBC. I have been on half dose (90) for the past 3 weeks, and was reduced to 135 in week 5 through 9. I just got my 12 week labs and I am UND. My WBC is up a bit so I will be increasing my interferon to 135 on Monday! I am still on reduced Riba (600mg day) for low RBC.
I just finished with the Incivo/Incivek so dr says we should start to see a rise in both R/WBC and can start to increase Riba dose soon. The dr also said that the research is showing no decline in SVR with reduced doses for those categorized as Rapid Responders with Incivo. So I pray that that is true.
Mark
Welcome and good luck with your treatment. Glad to hear you're feeling good so far. Some people have few or mild side effects. However your meds also have a cumulative build up effect in your system so it's not uncommon to get your side effects later or at anytime.
We all run the risk of low WBC (and red). Thats why we have our blood counts checked frequently. My WBC was at "low" week four and "Alert" week eight. We'll see what week twelve brings. You're lower than I am which is why you have to scale back the interferon. It's bad news but certainly not catastrophic. People in your situation keep treating and can reach SVR. Two things to do:
1) Repost under the On Treatment thread and you'll probably get responses from people in similar situation
2) Use the search link up top and key in "low white" There are several older threads on this topic.
Best, Dave
Hi and welcome Lara! Please don`t feel guilty that you`re not feeling run down, just be thankful! We all like to hear that someone`s having an easier time.
All the best of luck with your treatment.
~ Jill xx
ps - I`m moving this thread to the `On Treatment` section.
-- Edited by Cinnamon Girl on Wednesday 25th of April 2012 10:10:35 AM
I am at week three of triple therapy and so far other than my first day things have been very easy for me. I read about all of your stories and I feel guilty that I don't feel run down. I'm so sorry to all of you that are feeling sick and tired. I wish you all the best.
I did just get bad news, however, and am unsure if it is bad, horrible or catastrophic. I was wondering if anyone has had a low white blood cell count and if so what happened next in their treatment. They said they are going to half my pegasys, but I am still worried about what the future can hold. Hopefully someone knows. Thanks everyone for reading. Good luck and lots of love to all.