Aa
Confused about EOT
(Prior partial responder, Geno 1a, Triple therapy, UND week 4, 12, 24 44)
1000 Riba (no dose reduction) 180 mcg Interferon (no dose reduction)
Started Procrit and thyroid meds after Incivek
Needed two shots of Neupogen a few months ago
When I started treatment I was given a chart that outlined all my shots, lab dates and which tests I would need.
13 Jan 2012 Week 0 was baseline labs and my first shot, Riba & Incivek
14 Dec 2012 week 48 I have an appointment at 9 for all labs & a VL
21 Dec 2012 cease twice daily dosing of Ribavarin
11 Jan 2013 Follow up week 4 complete set of labs & VL
08 Mar 2013 Follow up week 12 labs
31 May 2013 Follow up week 24 labs
Friday, January 13, 2012
To and including: Friday, December 14, 2012
is 337 days
or
11 months, 2 days including the end date
or 48 weeks rounded down.
1) So Friday is my EOT viral load even though I will have not administered shot 48 yet and taken the last week of Riba?
2) Does this seem right?
3) I am going to administer my Procrit today as usual. Should I plan on taking a dose next week while I am still on the Riba?
4) Did any of you have labs or a VL prior to your scheduled labs. Maybe for a viral load or to see how your values were rebounding?
_____________________
The other thing is that I do not understand why I feel so bad since my CBC labs look good. I got off on a rocky start with Incivek and double dosed so many times with all three meds. I never managed to get organized even when I thought I was. I know this sounds dramatic but it actually kind of scares me what a mess I am.
.
Hgb 10.8 (11.1 - 15.9)
ANC 7.1 (1.8 - 7.8)
Platelets 187 (14 - 415)
This may be too soon but I thank everyone on here for their expertise and support.
I don't post questions much but I read old, recent and ongoing threads constantly. I am so glad this forum has longevity and people who continue to post long after SVR. We all know unlike with many other chronic long-term illnesses that with HCV you are just thrown out there in so many ways. Even with the dynamic changes in research and medication this forum is as crucial as ever. This has been a lonely scary experience and I would not have made it this far without the people here.
Thanks all
K
1000 Riba (no dose reduction) 180 mcg Interferon (no dose reduction)
Started Procrit and thyroid meds after Incivek
Needed two shots of Neupogen a few months ago
When I started treatment I was given a chart that outlined all my shots, lab dates and which tests I would need.
13 Jan 2012 Week 0 was baseline labs and my first shot, Riba & Incivek
14 Dec 2012 week 48 I have an appointment at 9 for all labs & a VL
21 Dec 2012 cease twice daily dosing of Ribavarin
11 Jan 2013 Follow up week 4 complete set of labs & VL
08 Mar 2013 Follow up week 12 labs
31 May 2013 Follow up week 24 labs
Friday, January 13, 2012
To and including: Friday, December 14, 2012
is 337 days
or
11 months, 2 days including the end date
or 48 weeks rounded down.
1) So Friday is my EOT viral load even though I will have not administered shot 48 yet and taken the last week of Riba?
2) Does this seem right?
3) I am going to administer my Procrit today as usual. Should I plan on taking a dose next week while I am still on the Riba?
4) Did any of you have labs or a VL prior to your scheduled labs. Maybe for a viral load or to see how your values were rebounding?
_____________________
The other thing is that I do not understand why I feel so bad since my CBC labs look good. I got off on a rocky start with Incivek and double dosed so many times with all three meds. I never managed to get organized even when I thought I was. I know this sounds dramatic but it actually kind of scares me what a mess I am.
.
Hgb 10.8 (11.1 - 15.9)
ANC 7.1 (1.8 - 7.8)
Platelets 187 (14 - 415)
This may be too soon but I thank everyone on here for their expertise and support.
I don't post questions much but I read old, recent and ongoing threads constantly. I am so glad this forum has longevity and people who continue to post long after SVR. We all know unlike with many other chronic long-term illnesses that with HCV you are just thrown out there in so many ways. Even with the dynamic changes in research and medication this forum is as crucial as ever. This has been a lonely scary experience and I would not have made it this far without the people here.
Thanks all
K
Hey there! You are the best, sorry I got so excited I missed a week on the calendar so came back to apologize
My heart is always in the right place however my foot is often in my mouth
All my very very best to you my friend
D
My heart is always in the right place however my foot is often in my mouth
All my very very best to you my friend
D
Thanks flcyclist (and everyone)
Anyway that is where I was confused. I double dosed a Peg in the summer and the specialty pharmacy just auto-ships drugs even when you tell them not too. So I see all this Peg left and I am like I still have this many more shots left (????)
The spreadsheet I have does not actually say I take a shot on the 14th. It just says week 48, 14 Dec 2012 and outlines the labs. I think the error (which is hand written) is the the date someone wrote for "cease taking twice daily Ribavarin." I think it should be tomorrow as well.
_________________
I had my share of scary discomforts along the way I did not really post about since there is excellent insight, info and experience on here. I just knew I did not want to have to stop treating or dose reduce so I tried to coordinate care with my PCP, Dermatologist and Endocrinologist rather than relying on the PA at my doctor's clinic for everything.
I started 40K of Procrit on week 20. I struggled with Hgb in the 8s for a while. I was willing to stay in the 9s on the full dose of Ribavarin and 40K of Procrit even though my Hgb would not budge.
The problem was having to consistently repeat my meds to doctors and the PA and say my dose of Ribavarin was 400 (when I was really taking the full dose). Finally on week 30 I told the PA that I understood the studies about Riba dose reduction and Triple but I was under dosed the first time (I am treating with the same doctor) and I was scared and really wanted to treat on the full dose as long as I could. The PA increased my Procrit to 60K on week 30. It has only been this past three CBCs my Hgb has been 10.8 and higher.
skiyaltr - you are right. I remember you saying we are on the same schedule and even then I thought no, you finish before me. I just wasn't seeing it. I hear you. We are OK on water but it is 32 degrees outside and in South Texas (cold weather , humid air) that is just unheard of. After more than an hour outdoors my chest gets really sore and my sinuses turn to goo.
Pooh - double thanks for everything - and I mean everything. Until hours ago I was still thinking I had one more week.
Frijole - On week 44 I finally did have the QuantaSure and it was just the code you said (it is in the LabCorp test library). It does take longer but the peace of mind it gave me was worth it.
Bo - I honestly think these PIs are harsh no matter how many weeks one treats. I only treated 19 weeks on the old SOC and it took me quite a while to recover.
OH - you are a walking miracle. I know there is no real comparing treatments but I do not know anyone who has gone through what you have and I am simply in awe of you.
Tekelcat - Five months is a while but not all that long especially if you are tapering pain killers.
Dannyboi7 - I am glad you are posting. I really meant it when I said I do not see how anyone can treat with these new meds in a vacuum. Even with dual therapy I feel like we all have much to offer one another.
Dee - as always I am glad to see you are around. Thanks for letting me not feel like a hypochondriacal whiner and encouraging me to investigate things that were wrong.
Anyway that is where I was confused. I double dosed a Peg in the summer and the specialty pharmacy just auto-ships drugs even when you tell them not too. So I see all this Peg left and I am like I still have this many more shots left (????)
The spreadsheet I have does not actually say I take a shot on the 14th. It just says week 48, 14 Dec 2012 and outlines the labs. I think the error (which is hand written) is the the date someone wrote for "cease taking twice daily Ribavarin." I think it should be tomorrow as well.
_________________
I had my share of scary discomforts along the way I did not really post about since there is excellent insight, info and experience on here. I just knew I did not want to have to stop treating or dose reduce so I tried to coordinate care with my PCP, Dermatologist and Endocrinologist rather than relying on the PA at my doctor's clinic for everything.
I started 40K of Procrit on week 20. I struggled with Hgb in the 8s for a while. I was willing to stay in the 9s on the full dose of Ribavarin and 40K of Procrit even though my Hgb would not budge.
The problem was having to consistently repeat my meds to doctors and the PA and say my dose of Ribavarin was 400 (when I was really taking the full dose). Finally on week 30 I told the PA that I understood the studies about Riba dose reduction and Triple but I was under dosed the first time (I am treating with the same doctor) and I was scared and really wanted to treat on the full dose as long as I could. The PA increased my Procrit to 60K on week 30. It has only been this past three CBCs my Hgb has been 10.8 and higher.
skiyaltr - you are right. I remember you saying we are on the same schedule and even then I thought no, you finish before me. I just wasn't seeing it. I hear you. We are OK on water but it is 32 degrees outside and in South Texas (cold weather , humid air) that is just unheard of. After more than an hour outdoors my chest gets really sore and my sinuses turn to goo.
Pooh - double thanks for everything - and I mean everything. Until hours ago I was still thinking I had one more week.
Frijole - On week 44 I finally did have the QuantaSure and it was just the code you said (it is in the LabCorp test library). It does take longer but the peace of mind it gave me was worth it.
Bo - I honestly think these PIs are harsh no matter how many weeks one treats. I only treated 19 weeks on the old SOC and it took me quite a while to recover.
OH - you are a walking miracle. I know there is no real comparing treatments but I do not know anyone who has gone through what you have and I am simply in awe of you.
Tekelcat - Five months is a while but not all that long especially if you are tapering pain killers.
Dannyboi7 - I am glad you are posting. I really meant it when I said I do not see how anyone can treat with these new meds in a vacuum. Even with dual therapy I feel like we all have much to offer one another.
Dee - as always I am glad to see you are around. Thanks for letting me not feel like a hypochondriacal whiner and encouraging me to investigate things that were wrong.
The confusing times and counts - we are on the same schedule; my first shot was 1/13 and last one was 12/7. Counting riba pills was a challenge since the refills did not align exactly since I was reduced; I still have some left over; but I did count them boxes of shots - many times. Three riba left and I am done.
One day I was sitting in the doctors office working the calendar and was off a week; I struggled and just could not figure it out. I was off my count of shots left at home but was so convinced of what was left.
This past week has been tough for me also; last labs were good so I attribute it to anxiety of the end of tx and the total saturation of meds. Have also add a little extra barking to my continual cough with colder weather and dry conditions in central Texas (please rain).
I run long distance so have related this to a marathon and closing in on the last hill. The last one has been a steep one, but I see the crest. Now the race is over and have to wait for the results to be published.
Congratulations on getting through; tx is no picnic and 48 weeks is a beast.
I am doing labs next Friday after 8 days with no meds. Was UND 4, 12, 24, and 36 and dr expected the same so this is really for a mental boost while waiting out the next labs.
Wishing you the best.
excuse any typos - under the influence of hep c meds :)
One day I was sitting in the doctors office working the calendar and was off a week; I struggled and just could not figure it out. I was off my count of shots left at home but was so convinced of what was left.
This past week has been tough for me also; last labs were good so I attribute it to anxiety of the end of tx and the total saturation of meds. Have also add a little extra barking to my continual cough with colder weather and dry conditions in central Texas (please rain).
I run long distance so have related this to a marathon and closing in on the last hill. The last one has been a steep one, but I see the crest. Now the race is over and have to wait for the results to be published.
Congratulations on getting through; tx is no picnic and 48 weeks is a beast.
I am doing labs next Friday after 8 days with no meds. Was UND 4, 12, 24, and 36 and dr expected the same so this is really for a mental boost while waiting out the next labs.
Wishing you the best.
excuse any typos - under the influence of hep c meds :)
I noticed I felt immediately better, when my Riba was reduced from 1,200, to 800 mgs, at 19 weeks. Even though my labs continued to get lower, I felt so great, being on less Riba.
The fact that you did 48 weeks, with your Riba at 1000 is amazing, and also alot of chemicals for a body to take in, along with all the Inf, and the Procrit.
Your body is prob just sending out signals, to say, "hey, okay, enough..I'm saturated with these chemicals, enough is enough".
My last week was incredibly hard also, and I did half your time. You
have done an admirable job with your treatment, and I am hoping you will bounce back quickly~ best wishes, and thank you for your many helpful and thoughtful posts, and I will be looking forward to reading many more,in the future :)
Congrats on reaching the finish-line...woot
The fact that you did 48 weeks, with your Riba at 1000 is amazing, and also alot of chemicals for a body to take in, along with all the Inf, and the Procrit.
Your body is prob just sending out signals, to say, "hey, okay, enough..I'm saturated with these chemicals, enough is enough".
My last week was incredibly hard also, and I did half your time. You
have done an admirable job with your treatment, and I am hoping you will bounce back quickly~ best wishes, and thank you for your many helpful and thoughtful posts, and I will be looking forward to reading many more,in the future :)
Congrats on reaching the finish-line...woot
Having completed 24 weeks, I'm always so very impressed by those who do longer treatments. You are an inspiration.
Congrats on making it to the finish line.
Now, do something nice for yourself. My suggestion is a series of deep tissue massages. Celebrate, you deserve it !
Congrats on making it to the finish line.
Now, do something nice for yourself. My suggestion is a series of deep tissue massages. Celebrate, you deserve it !
I think the bloods are scheduled correctly. Feeling bad? Yes, sure. This process is so hard on the body and on the mind that it's very likely anyone would feel badly at the end. I reached EOT 5 weeks ago, still UND, LFTS all perfect, HGB likewise, platelets great, but I feel like total rubbish. Part of that is stepping down the painkillers they gave me for interferon-related bone pain, but the other part - the exhaustion, depression, aches and pains -- is just my poor old body and brain telling me it has had enough. You too maybe.
I agree with the others. You have done 48 shots already and just have to finish a couple more days of Riba. So your blood draw is scheduled for the correct date.
Wow! You are 2 days shy of being finished. What a wonderful early Holiday gift. No more shots.
It was a long haul and you made it. Congratulations!
Wow! You are 2 days shy of being finished. What a wonderful early Holiday gift. No more shots.
It was a long haul and you made it. Congratulations!
I am not the sharpest knife in the drawer however I just got my calendar out and counted from Jan 13th, 48 shots and one week of riba, you are done!!!!
DONE!!!
Thank GOD!!!!
DONE!!!
Thank GOD!!!!
All I'v got to say is you're doing good and Congrats!! I did 24 weeks on SOC and there was no way I could have posted in these forums while on treatment,I was to brain dead to even compose a coherent sentence.
Oh my gosh! It sounds like you are done! I think flycyclist is right! Thank God, it is OVER!
At the end, no matter how good your numbers look you are so ragged out physically and mentally you can not think straight, I remember that feeling.
I remember crying as I did my last injection, I did not want to do it, I wanted it to be over. I was so weak, muscles aching, dizzy feeling twisted. My nerves were shot, I just could not take any more
I hope you are done, you have worked so hard, doubly hard, you have helped so many people, come up with multiple dozens of very good, intelligent researched answers
You are my hero and if you are done wouldn't that be so wonderful?
In my case I had to tell my doctor when I was done, it sounds like your doctor might know you are done and that is why you have blood work scheduled, it is your EOT WOO HOO
My very very bestest ever to you
Dee
At the end, no matter how good your numbers look you are so ragged out physically and mentally you can not think straight, I remember that feeling.
I remember crying as I did my last injection, I did not want to do it, I wanted it to be over. I was so weak, muscles aching, dizzy feeling twisted. My nerves were shot, I just could not take any more
I hope you are done, you have worked so hard, doubly hard, you have helped so many people, come up with multiple dozens of very good, intelligent researched answers
You are my hero and if you are done wouldn't that be so wonderful?
In my case I had to tell my doctor when I was done, it sounds like your doctor might know you are done and that is why you have blood work scheduled, it is your EOT WOO HOO
My very very bestest ever to you
Dee
Wow - you are at the end, at last. Idyllic, I am so happy for you. I know why you feel so bad. At the end, I don't think it is the lab work. I think it is just so grueling overall and by the end we are just so worn out we cannot even think. At least that is how I was. My whole body was just plain tired.
I think the EOT blood work and VL test should be on the 7th day of the 48th week. It sounds like you are getting your tests done a week early,not that I think it will matter that much. The biggie, always, is the 6 month post.
Congrats on coming to the end.
bean
I think the EOT blood work and VL test should be on the 7th day of the 48th week. It sounds like you are getting your tests done a week early,not that I think it will matter that much. The biggie, always, is the 6 month post.
Congrats on coming to the end.
bean
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Regarding the Procrit, is your Hgb currently at 10.8? If so, I didn’t think Procrit was administered unless under 10. Maybe I’m missing something here? I know it’s not easy, but try not to worry about your labs looking good and you feeling poor. Mine were the same (except for low ANC) and I felt like crap. This will pass after eot. You will find that out very soon. Bean is right - 48 weeks is a friggin long haul. Your body is worn out.
And a und at 4 weeks!!! Awesome. Looking very good for you. Best wishes.