Aa
LENGTH OF TREATMENT
Hi everyone. I just came back from the doctor in Chicago on Friday and after 7 injections my bloodwork came back undetected less than 5. My viral load was 1.5 million when I started. I was excited then the doctor said I had to be undetected for 15 months straight? I thought everyone only had to be on the treatment for 48 months not 72 months? My genotype is 1a which I know is the hardest to treat but I thought the treatment was still 48 months. My hemoglobin was 9 and she said I was anemic and my white blood count is at 1.8 low. I told her I was tired all the time and my legs were sore and felt like rubber and some days I could not hardly walk. She said drink more gatorade and when I felt like I could not get up in the morning she would give me a shot of procrit. Why cant she give me the shot now?Do ihave to wait because my hemoglobin is not low enough yet? Does this doctor know what she is talking about??? I am a mail carrier and some days I can barely make it threw the day in this heat we had. I feel like crying all the time. I come home from work and go straight to bed for at least a 2 hour nap and then I am back in bed at 8:00 pm. I feel so bad for my family that I am so tired all the time. Is there any vitamins I can take?? Thank you for all your responses and help. I appreciate it so much.
Guys...
I understand that the standard treatment is less than what dodger was told and what his doctor prescribes. BUT, I would by all means listen to him and do what he says if at all possible.
Jim says that common protocal is to treat for 36 weeks after clearance. I remember reading many studies like that, but the ones I read said that if you treat 40 weeks post clearance then you should have a 90% chance of SVR.
THAT IS NOT GOOD ENOUGH!!!
Of course all depends upon how well you are tolerating the treatment, but if you can stand it, treat for as long as you can!
I started with a viral load of 7.5 million. I tested at 40 at week 4. I was undetectable (less than 10)at week 8. I was negative by qualitative test by week 12, week 24, and week 48. I treated for the full 48 weeks and never missed a dose or never was late or never took less than a full dose of either the Pegasys or the Cophegas.
So, if I was negative at week 8, and treated for a full 48 weeks, then I treated for a full 40 weeks post clearance. But, I had relapsed by 1 month post treatment.
So, don't listen to the "standard" and don't read the statistics and the percentages. Listen to your doctor.
If your doctor wants you to go for 60 weeks, just think: The standard and the minimum for a genotype 1 is 48 weeks, so your doctor is only asking you to do 12 additional weeks. IF you don't and should you relapse, the only choice you have is to try again for a full 72 weeks.
So, I ask you what is the better trade off: 12 more weeks now, or 72 more weeks later????? IF I had of had the choice, I would have easily chosen the 12!
I understand that the standard treatment is less than what dodger was told and what his doctor prescribes. BUT, I would by all means listen to him and do what he says if at all possible.
Jim says that common protocal is to treat for 36 weeks after clearance. I remember reading many studies like that, but the ones I read said that if you treat 40 weeks post clearance then you should have a 90% chance of SVR.
THAT IS NOT GOOD ENOUGH!!!
Of course all depends upon how well you are tolerating the treatment, but if you can stand it, treat for as long as you can!
I started with a viral load of 7.5 million. I tested at 40 at week 4. I was undetectable (less than 10)at week 8. I was negative by qualitative test by week 12, week 24, and week 48. I treated for the full 48 weeks and never missed a dose or never was late or never took less than a full dose of either the Pegasys or the Cophegas.
So, if I was negative at week 8, and treated for a full 48 weeks, then I treated for a full 40 weeks post clearance. But, I had relapsed by 1 month post treatment.
So, don't listen to the "standard" and don't read the statistics and the percentages. Listen to your doctor.
If your doctor wants you to go for 60 weeks, just think: The standard and the minimum for a genotype 1 is 48 weeks, so your doctor is only asking you to do 12 additional weeks. IF you don't and should you relapse, the only choice you have is to try again for a full 72 weeks.
So, I ask you what is the better trade off: 12 more weeks now, or 72 more weeks later????? IF I had of had the choice, I would have easily chosen the 12!
thanks for this jm. Well my bloodwork always comes back as being anemic, event though I dont feel it, so I guess I need to dig into this. Just found a good site with dictionary and short discription, pics and all on medlineplus site. I really want to trust my doctor, but like you say, it looks like we have to be our advocates and monitor everything and dig into it. Im reading all my blood test from 13 years ago when I was in really bad shape. it was thought to be allergy, but it
IsThisReal said previously: "Jim says that common protocal is to treat for 36 weeks after clearance."
______________________
I know you didn't do it intentionally, but you're quoting me out of context. I also said elsewhere in this thread that while 67 months tx for a geno 1 with minimal liver damage is agressive, hopefully it will increase Dodger's chance for SVR. I also mentioned that stage 3's and 4's are often treated for 72 weeks and sometimes even for two years.
I'm a firm believer in doing your homework, finding your options, and then making the tx decision that is right for you. That doesn't mean blindly following "common protocol" nor does it mean blindly following what your doctor says.
In many cases there is no right or wrong, simply different conclusions based on the same data but with a different perspective. That's why some very good doctors come to different conclusions looking at the same studies.
Dodger has been presented with a number of options and hopefully will make the right choice based on her perspective. And that's really the only one that matters.
Sorry for the speech but I just got jacked up by a slice of blue berry pie and now must go and down a bottle of Gaviscon. :)
-- Jim
______________________
I know you didn't do it intentionally, but you're quoting me out of context. I also said elsewhere in this thread that while 67 months tx for a geno 1 with minimal liver damage is agressive, hopefully it will increase Dodger's chance for SVR. I also mentioned that stage 3's and 4's are often treated for 72 weeks and sometimes even for two years.
I'm a firm believer in doing your homework, finding your options, and then making the tx decision that is right for you. That doesn't mean blindly following "common protocol" nor does it mean blindly following what your doctor says.
In many cases there is no right or wrong, simply different conclusions based on the same data but with a different perspective. That's why some very good doctors come to different conclusions looking at the same studies.
Dodger has been presented with a number of options and hopefully will make the right choice based on her perspective. And that's really the only one that matters.
Sorry for the speech but I just got jacked up by a slice of blue berry pie and now must go and down a bottle of Gaviscon. :)
-- Jim
The hemoglobin/anemia theme comes up so often in a negative way in these discussions groups that it's not hard to conclude that many docs are not doing their job.
As far as being vacinated for hep a and b before tx, I believe that is pretty standard protocol over here. I've read it, and heard it from two sets of tx doctors.
Without going into details, I ended up not vaccinating because I had what might have been a bad reaction to a hep B vaccine three years ago, and therefore didn't want to chance a second vaccination when I starting tx four months ago.
-- Jim
As far as being vacinated for hep a and b before tx, I believe that is pretty standard protocol over here. I've read it, and heard it from two sets of tx doctors.
Without going into details, I ended up not vaccinating because I had what might have been a bad reaction to a hep B vaccine three years ago, and therefore didn't want to chance a second vaccination when I starting tx four months ago.
-- Jim
Re the procrit: you're right, your doctor is being inflexible and probably also cruel. Have you made it clear that your livelihood depends on your being able to walk long distances? With obvious symptoms like that, she should have you on Procrit right now. There is no reason why you should be suffering to this extent. As for treatment length, you're right again. 72-week treatment is still reserved for those who responded much later than you did. You're right on schedule and it is strange that she would be talking about extension. Might be worth investing in a second opinion so you have some medical backup. The last thing you feel like doing right now is playing advocate for yourself, but it looks like you're going to have to get (politely) aggressive about the Procrit. Very best of luck to you.
Veggie: Many good sources for SAM-e around. You don't need to pay anymore than $28 per 30-count box of 400 mg. I like SmartBomb's prices, and many people here have recommended Puritan's Pride and Vitacost. If there are depression issues, take anywhere from 1200-1600 mg daily. For liver support before, during and after tx , 600-800 mg. Nature's Made brand has tested out consistently pure, as has Jarrow.
Veggie: Many good sources for SAM-e around. You don't need to pay anymore than $28 per 30-count box of 400 mg. I like SmartBomb's prices, and many people here have recommended Puritan's Pride and Vitacost. If there are depression issues, take anywhere from 1200-1600 mg daily. For liver support before, during and after tx , 600-800 mg. Nature's Made brand has tested out consistently pure, as has Jarrow.
I am sorry you are feeling so bad. Your vl results are great though! It seems to be working.
The standard treatment is 48 WEEKS, not months. I think your docs idea of 15 months(60 weeks) is great for geno1. Wish mine was thinking that.
I believe you should have Procrit at 10gm Hgb. Demand it now.
Hang in there.
The standard treatment is 48 WEEKS, not months. I think your docs idea of 15 months(60 weeks) is great for geno1. Wish mine was thinking that.
I believe you should have Procrit at 10gm Hgb. Demand it now.
Hang in there.
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