Aa
Extension of Treatment Due to Reduction of Riba Dosage
There was a thread a while back regarding late/delayed responders and extension of treatment. Generally, the consensus was that it's beneficial to extend treatment to 36 weeks from the point you clear the virus.
I had a two point log drop at my 12 week VL count, which I guess is on track. Unfortunately, I've had to significantly drop my riba dosages to half due to anemia. We're trying to get the anemia under control with procrit and the lowered dosages of riba. My hope is to eventually be able to increase the riba to at least 80% of the intended dose.
My question is, my doctor pretty much refused to talk about extending treatment. My fear is that if he can keep me on at this rate, he will; but it'll be worthless to stop at 48 weeks at such a low dose (600 mg of riba). He says he's never extended treatment; however, he's also never worked with Infergen and admits to not having as much experience as the nurse practitioner.
He also has said that he assumes I won't be able to stay the course due to anemia, so the discussion of extension of treatment is moot. Thankfully, he has agreed to refer me to a hepatologist in my insurance group. Does anyone have any information of extension of treatment due to temporary drop in dose? At 7.6-8.4 hgb, transfusions are out of the question, for some reason. Anyone hear of anemia being treated with both procrit and transfusions. I'm on 60,000 a week now for procrit.
I had a two point log drop at my 12 week VL count, which I guess is on track. Unfortunately, I've had to significantly drop my riba dosages to half due to anemia. We're trying to get the anemia under control with procrit and the lowered dosages of riba. My hope is to eventually be able to increase the riba to at least 80% of the intended dose.
My question is, my doctor pretty much refused to talk about extending treatment. My fear is that if he can keep me on at this rate, he will; but it'll be worthless to stop at 48 weeks at such a low dose (600 mg of riba). He says he's never extended treatment; however, he's also never worked with Infergen and admits to not having as much experience as the nurse practitioner.
He also has said that he assumes I won't be able to stay the course due to anemia, so the discussion of extension of treatment is moot. Thankfully, he has agreed to refer me to a hepatologist in my insurance group. Does anyone have any information of extension of treatment due to temporary drop in dose? At 7.6-8.4 hgb, transfusions are out of the question, for some reason. Anyone hear of anemia being treated with both procrit and transfusions. I'm on 60,000 a week now for procrit.
Wasabi Pea, I've been thinking about you during your anemia challenges as it looks like we are in similar situations. Talk about an inspiration......YOU ARE the inspiration. You have such a great outlook faced with what you are dealing with AND being told you may have to extend tx for an additional year. Now that is inspirational! I will have you on my mind as you get your PCR...I am so hoping that your PCR is great news. Please keep us posted as I will be anxious to hear your news...either way you deserve to be complimented on your great attitude. I KNOW how frustrating these blood levels can be. Forgive me but I don't know some of your history such as when did you start tx and how far along are you at this point?
I was impressed your doctor was willing to get you on 80,000 units of Procrit...That gives me hope. I was told the max would be 60,000 which I still am discussing with the doctor.
As for myself along with the anemia which is now (got the results back yesterday) at a whopping 7.5 hemoglobin....down from 7.8 at my last test. I've been there now for over 2 months. I am still functioning well but have increased dizzy spells and some vision blurriness, (heart palpaltaions have stopped....VERY happy about that!)..The doctor however is less concerned with my hemoglobin and now is more concerned with the WBC counts...never a dull moment but I refuse to let this intimidate me! My WBC is now at 1.7 down from last 2.0 and the doctor is now sending me to a hemotologist this coming tuesday. I assume neupogen will be in order now. The doctor told me they won't address my low hemoglobin until I get in a more "safe" zone with my WBC. (I don't know what my ANC is right now but I assume it is not good....dummy me forgot to ask last phone meeting) I will discuss with the new doctor all my blood problems and come up with a plan of attack.....I/m of course hoping that I can remain on my current dosing but I will listen, educate myself even more, and hold on tight for this next 5 months of tx and do what I have to to not jeapordize my health.....I'm afraid it is going to be a roller coaster ride.
I am thinking of you with your upcoming PCR. In a strange way I feel very conected to you as we are going through alot of the same stresses......If only the blood would cooperate all else would be positive!
Best to you Wasabi Pea...I'll look for a future post from you with news on your situation and especially news with your PCR.
Scott
I was impressed your doctor was willing to get you on 80,000 units of Procrit...That gives me hope. I was told the max would be 60,000 which I still am discussing with the doctor.
As for myself along with the anemia which is now (got the results back yesterday) at a whopping 7.5 hemoglobin....down from 7.8 at my last test. I've been there now for over 2 months. I am still functioning well but have increased dizzy spells and some vision blurriness, (heart palpaltaions have stopped....VERY happy about that!)..The doctor however is less concerned with my hemoglobin and now is more concerned with the WBC counts...never a dull moment but I refuse to let this intimidate me! My WBC is now at 1.7 down from last 2.0 and the doctor is now sending me to a hemotologist this coming tuesday. I assume neupogen will be in order now. The doctor told me they won't address my low hemoglobin until I get in a more "safe" zone with my WBC. (I don't know what my ANC is right now but I assume it is not good....dummy me forgot to ask last phone meeting) I will discuss with the new doctor all my blood problems and come up with a plan of attack.....I/m of course hoping that I can remain on my current dosing but I will listen, educate myself even more, and hold on tight for this next 5 months of tx and do what I have to to not jeapordize my health.....I'm afraid it is going to be a roller coaster ride.
I am thinking of you with your upcoming PCR. In a strange way I feel very conected to you as we are going through alot of the same stresses......If only the blood would cooperate all else would be positive!
Best to you Wasabi Pea...I'll look for a future post from you with news on your situation and especially news with your PCR.
Scott
Congrats on such a rapid and dramatic VL drop. Wow! Bodes well. Hope it just disappears on ya!
Apparently, Procrit can be dosed up to 80,000 units weekly.
I just got a call my GI doctor yesterday. Although he seems inexperienced, he made my day by contacting a hepatologist, and they've come up with a treatment plan that I'm fairly comfortable with.
Because my hgb dropped back down to 7.8 (it seems to vary quite often....7.6 to 8.4. to 7.8 in the span of a week or two), they've decided to up me from 20,000 units three times a week to 40,000 units twice a week.
What they've decided to do is discontinue Ribavirin for now, continue with the Pegasys injections, wait until my hgb comes back up to 9.0, then start the riba back up again, and then just play with it until they find a good balance between the Procrit and the Riba. Once I start back on Riba, then I'll stay on tx another year. Wow. Trying to keep my eye on the big picture.
The only hitch is that my PCR test has to show that the virus hasn't rebounded significantly from my last test. I go and get that test done in a couple days, so keep your fingers crossed for me. If the VL has rebounded, they're going to discontinue tx, period. Trying very, very hard not to worry about that.
But I wanted to thank everyone for all their responses. You guys really made my day, and you really help give me the confidence to demand to be involved in tx decisions with my doctor. If it weren't for you guys, I wouldn't know what to ask for. If I didn't ask, my doctors would have discontinued me again without bothering with all the adjustments in Procrit and what have you.
Thank you.
I just got a call my GI doctor yesterday. Although he seems inexperienced, he made my day by contacting a hepatologist, and they've come up with a treatment plan that I'm fairly comfortable with.
Because my hgb dropped back down to 7.8 (it seems to vary quite often....7.6 to 8.4. to 7.8 in the span of a week or two), they've decided to up me from 20,000 units three times a week to 40,000 units twice a week.
What they've decided to do is discontinue Ribavirin for now, continue with the Pegasys injections, wait until my hgb comes back up to 9.0, then start the riba back up again, and then just play with it until they find a good balance between the Procrit and the Riba. Once I start back on Riba, then I'll stay on tx another year. Wow. Trying to keep my eye on the big picture.
The only hitch is that my PCR test has to show that the virus hasn't rebounded significantly from my last test. I go and get that test done in a couple days, so keep your fingers crossed for me. If the VL has rebounded, they're going to discontinue tx, period. Trying very, very hard not to worry about that.
But I wanted to thank everyone for all their responses. You guys really made my day, and you really help give me the confidence to demand to be involved in tx decisions with my doctor. If it weren't for you guys, I wouldn't know what to ask for. If I didn't ask, my doctors would have discontinued me again without bothering with all the adjustments in Procrit and what have you.
Thank you.
Hey Sue,
Thanks so much for all your support. You're right. Doug is pretty darn amazing. Actually, I'm finding all of you guys on the forum are pretty darn amazing.
Things are starting to look up. I received an appt. yesterday for September 1, to see the hepatologist. Later on in the day, my GI doc called and told me he conferred with another hepatologist, and laid out a plan of treatment I can live with. I just didn't want to continue tx without even considering extension of the duration.
Just keep your fingers crossed for me. I have to take my PCR this week. If the virus has popped back up significantly, they're going to take me off altogether. If not, then we're looking at another year of tx. I really want that chance at the tx.
Thanks again. Hope all's going well for you.
Angela
Thanks so much for all your support. You're right. Doug is pretty darn amazing. Actually, I'm finding all of you guys on the forum are pretty darn amazing.
Things are starting to look up. I received an appt. yesterday for September 1, to see the hepatologist. Later on in the day, my GI doc called and told me he conferred with another hepatologist, and laid out a plan of treatment I can live with. I just didn't want to continue tx without even considering extension of the duration.
Just keep your fingers crossed for me. I have to take my PCR this week. If the virus has popped back up significantly, they're going to take me off altogether. If not, then we're looking at another year of tx. I really want that chance at the tx.
Thanks again. Hope all's going well for you.
Angela
Hi Scott,
How are you doing today? I'm in awe of you walking everyday. You're an inspiration.
I guess my hgb last Thursday came back at 7.8, back down from 8.4. But yesterday I was extremely energetic...shopped for two hours, commuted for four hours, and did some prep work at my family's restaurant after my regular job. Pretty good day for me.
I did get my iron stores taken on Thursday. All the doc told me is that the saturation's a little high, but that's probably being caused by the interferon. Although the docs don't seem to want to address this for some reason, I think part of the problem is my thalassemia. It's a hemoglobinopathy that runs in the family. I'm not familiar with Hypo Homo Cysteine, but if your brother has it, it sounds reasonable that you might have this trait...which could be a factor in your RBC production abilities.
They also raised my procrit from 60,000 to 80,000. I really was only on the 40,000 maybe two or three weeks, and the 60,000 for one week. I wonder if they're just panicking over the low hgb. They seem to get really excited about it. I realize their fears about the risks involved. But I don't know. I had an uncle who was a professor in Taiwan who taught regularly. He was either at a 4 point something or a 6 point something. That was due to his thalassemia. The point is, though, people adjust to these levels. He was always low. He did take a nap after every lecture, but he did all right for himself. <g> Lived a fairly long life.
As I mentioned in the above posts, as long as my PCR remained low during this period of the lowered riba, then they'll continue to treat me. If not, then they want to pull the plug. Trying so hard not to stress about it. Keep your fingers crossed. I'll have my PCR done this week.
Hope things are working out with you? Any luck on getting that test run?
Angela
How are you doing today? I'm in awe of you walking everyday. You're an inspiration.
I guess my hgb last Thursday came back at 7.8, back down from 8.4. But yesterday I was extremely energetic...shopped for two hours, commuted for four hours, and did some prep work at my family's restaurant after my regular job. Pretty good day for me.
I did get my iron stores taken on Thursday. All the doc told me is that the saturation's a little high, but that's probably being caused by the interferon. Although the docs don't seem to want to address this for some reason, I think part of the problem is my thalassemia. It's a hemoglobinopathy that runs in the family. I'm not familiar with Hypo Homo Cysteine, but if your brother has it, it sounds reasonable that you might have this trait...which could be a factor in your RBC production abilities.
They also raised my procrit from 60,000 to 80,000. I really was only on the 40,000 maybe two or three weeks, and the 60,000 for one week. I wonder if they're just panicking over the low hgb. They seem to get really excited about it. I realize their fears about the risks involved. But I don't know. I had an uncle who was a professor in Taiwan who taught regularly. He was either at a 4 point something or a 6 point something. That was due to his thalassemia. The point is, though, people adjust to these levels. He was always low. He did take a nap after every lecture, but he did all right for himself. <g> Lived a fairly long life.
As I mentioned in the above posts, as long as my PCR remained low during this period of the lowered riba, then they'll continue to treat me. If not, then they want to pull the plug. Trying so hard not to stress about it. Keep your fingers crossed. I'll have my PCR done this week.
Hope things are working out with you? Any luck on getting that test run?
Angela
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