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Victrelis Vic-tory
I had my long- awaited appointment with the heppo on Thursday, Oct 20. I had a PCR (8-week) and CBC done the same day so I knew the doctor would not have those results. Yet I was hoping he would have the results from the PCR done 2 weeks previously. I was l ready to explain how put out I was that he was not calling me immediately on my labs but, as it turned out, they had input his name wrong and he never got them. Anyway I left that appointment not knowing where I stood and feeling pretty down. It is an all day affair to fly to Dallas and get to the hospital and back to the airport, not to mention costly, and I left without any answers. He did tell me that if my hemoglobin was under 10 on the 10/20 test he would order procrit.
Today - Tuesday - I got the call with all my labs. For background, my pretreatment vl was over 2,000,000 and my 4-week lead in PCR was 3900.
After 2 weeks on Victrelis ---- QuantaSure (sensitive to 2IU/mL) -- Less than 2 IU/mL
After 4 weeks on Victrelis --- HCV RT-PCR (quantifiable to 25 iu/ML with a limit of detection to 7.1IU/mL) -- HCV Not Detected!!!!!!!!!!!!!!
So Victrelis has done it. It has pushed the virus over the edge. On my first treatment I had detectable virus of 40 IU/mL at week 12, was UND by week 20, and UND thru 56 week end of treatment but relapsed. It is because I had such low virus at week 12 the first time that it is important for me to have the most sensitive test possible -- I need to know if I am truly clear, and you can't beat the QuantaSure for that. It takes over 2 weeks to obtain the results of the Quanta Sure since they have to be sent to California, but there does not seem to be any more flack over the Victrelis by the insurance company so since we are not waiting on approval I have requested the doctor order the Quanta Sure for the rest of treatment.
Today I feel good. Some days are hard. I am always tired. But at least now I have reason for joy. We celebrated with my favorite kind of icecream tonight. My hemoglobin was 10.1 and the doctor is beginning the process to get the procrit approved.
frijole
Today - Tuesday - I got the call with all my labs. For background, my pretreatment vl was over 2,000,000 and my 4-week lead in PCR was 3900.
After 2 weeks on Victrelis ---- QuantaSure (sensitive to 2IU/mL) -- Less than 2 IU/mL
After 4 weeks on Victrelis --- HCV RT-PCR (quantifiable to 25 iu/ML with a limit of detection to 7.1IU/mL) -- HCV Not Detected!!!!!!!!!!!!!!
So Victrelis has done it. It has pushed the virus over the edge. On my first treatment I had detectable virus of 40 IU/mL at week 12, was UND by week 20, and UND thru 56 week end of treatment but relapsed. It is because I had such low virus at week 12 the first time that it is important for me to have the most sensitive test possible -- I need to know if I am truly clear, and you can't beat the QuantaSure for that. It takes over 2 weeks to obtain the results of the Quanta Sure since they have to be sent to California, but there does not seem to be any more flack over the Victrelis by the insurance company so since we are not waiting on approval I have requested the doctor order the Quanta Sure for the rest of treatment.
Today I feel good. Some days are hard. I am always tired. But at least now I have reason for joy. We celebrated with my favorite kind of icecream tonight. My hemoglobin was 10.1 and the doctor is beginning the process to get the procrit approved.
frijole
Truly excited and very happy for you, you made my evening... CONGRATULATIONS! That is just a fantastic double whammy of good news. Enjoy that ice cream... enjoy and savor the flavor and the victory with Victrelis... your body can stay prone, but at least your spirits are on Cloud 9. :)
~eureka
~eureka
That is awesome news! Im very happy for you! So you have to get on a plane everytime you need to see the doc? Wow, I thought I had it hard. Best wishes for continued UND! You'll make it this time!!
Great news! I love hearing good news from fellow heppers. Good luck with the rest of your journey!!
I'm so happy for you, I've been waiting on your post, which you give with such precise detail. That's really exciting news and I congratulate you.
Charlie
Charlie
Well kathy that puts a huge smile on my face, but i have to say i'm not surprised by it.:) We have been through alot over the years here. You stuck with me through out my 2 treatments, been a great friend, plus you helped me out of a mess........... Now i wait to read the SVR thats coming.
BTW, i strongly recommend ice cream.......:)
BTW, i strongly recommend ice cream.......:)
Way to go girl!! I was just thinking earlier that we hadn't heard from you. I love the title on this!! VIC-tory for sure!!
Yes! VICtory...one day at a time. Such good news. I am truly happy for you and you inspire me with your valor on your quest.
Good news! Glad to hear you are responding so well to treatment.
Hang in there. It could be a bumpy ride at times but it will be well worth it.
Hector ;-)
Hang in there. It could be a bumpy ride at times but it will be well worth it.
Hector ;-)
what great news. personally i would not take rescue drugs unless below 10 as they can have another set of sx. i hovered around 10 for 6 mos and managed.
i took stairs very slowly and did bend head down very often as dizzy when i did. i rested alot between chores or work. such good news, it has been a long haul for u and it is time for things to look up. yeah yeah!, keep up the good work, babs824
i
i took stairs very slowly and did bend head down very often as dizzy when i did. i rested alot between chores or work. such good news, it has been a long haul for u and it is time for things to look up. yeah yeah!, keep up the good work, babs824
i
Congratulations!!!!! That is awesome news. I start VIC in Nov and I can only hope my results are as food as yours. Congratulations!!!!
This is great news frijole!! It looks like Vic is going to do the job for you this time. Good luck the rest of the way!
Will
Will
Thank you all
A couple of insteresting comments from the hepatologist --
He has had 1 person quit the Victrelis, but that was a treatment naive patient who could not tolerate the treatment.
He has had 2 people quit the Incevik which most of his client base is doing. He has had a couple of patients exhibit a bad rash but most have been caught early - he insists patients call immediately so he can rx something - and are tolerating treatment well
And the even better news, and he smiled when he said this, he is seeing 100% cure rate. I think this means UND, as there has not been time yet with the PIs for too many SVR after 6 months of treatment.
Interestingly he thinks he will have to fight the insurance company for the procrit but was receptive when I told him I thought my hemotologist used a chemotherapy code first treatment, he thought he might call an oncologist friend of his and ask him.
his3707 - it is a 6 hour drive, so that usually means an overnight stay so flying is better. I have learned to work the bus system pretty well in Dallas (Being an old city gal I have an affinity for public transportation) but this time since I thought my ANC was low, I decided to take a cab -- $30 with the tip. I am just too cheap for that so took the bus back to the airport -- LOL - . I do think I am in the right place even with the inconvenience of travel. I have beginning cirrhosis so I like being in the care of transplant specialists, even though I don't think I will ever need one. There are no hepatologists in my town.
babs - did you work outside the home? I do and will continue thru treatment and that would be so much easier if I could keep the HGB in the 11s. During my first tx I didn't start procrit until week 17 so the VIC has really bumped the schedule (I am in week 9),
can-do - that ice cream was mighty fine!
frijole
A couple of insteresting comments from the hepatologist --
He has had 1 person quit the Victrelis, but that was a treatment naive patient who could not tolerate the treatment.
He has had 2 people quit the Incevik which most of his client base is doing. He has had a couple of patients exhibit a bad rash but most have been caught early - he insists patients call immediately so he can rx something - and are tolerating treatment well
And the even better news, and he smiled when he said this, he is seeing 100% cure rate. I think this means UND, as there has not been time yet with the PIs for too many SVR after 6 months of treatment.
Interestingly he thinks he will have to fight the insurance company for the procrit but was receptive when I told him I thought my hemotologist used a chemotherapy code first treatment, he thought he might call an oncologist friend of his and ask him.
his3707 - it is a 6 hour drive, so that usually means an overnight stay so flying is better. I have learned to work the bus system pretty well in Dallas (Being an old city gal I have an affinity for public transportation) but this time since I thought my ANC was low, I decided to take a cab -- $30 with the tip. I am just too cheap for that so took the bus back to the airport -- LOL - . I do think I am in the right place even with the inconvenience of travel. I have beginning cirrhosis so I like being in the care of transplant specialists, even though I don't think I will ever need one. There are no hepatologists in my town.
babs - did you work outside the home? I do and will continue thru treatment and that would be so much easier if I could keep the HGB in the 11s. During my first tx I didn't start procrit until week 17 so the VIC has really bumped the schedule (I am in week 9),
can-do - that ice cream was mighty fine!
frijole
Wonderful, wonderful news and, it also sounds like you have an excellent listener in your doctor.
From a fellow 6-hour tripper...
From a fellow 6-hour tripper...
Woot! Woot Awsome news. It makes all the sxs worth it. I was 580 at four weeks on VIC. I get my next VL 11/10 and I am praying I hear UND1 I'm so happy for you.
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