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.
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. :)
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.
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
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),
It is great news to hear that so far your doctor is seeing 100% cure/UND rate (except for the 3 dropouts). Do you know how many patients he has on triple treatment? I am just wondering if it is a large number or a small number. My case manager said that so far all of their patients have become UND except one who had a severe dermatological reaction to the Incivek. My doctor only uses Incivek. I asked how many patients they had (that are far enough into treatment for testing the viral load) and she said six that became UND and the one they had to discontinue due to the severe reaction (so total 7), so not a huge number but still encouraging that all who actually were able to do the triple treatment are now UND. They have more patients like me who have not yet been tested for viral load since starting tratment. (I actually had blood drawn Monday for my 4 week test and am anxiously awaiting the results.) I just hope that the good news continues.
Yeah Bean!!! Great to hear this good news for you. Sounds very promising and all continues on this great path. It sounds like you're tolerating well and have a great positive attitude. Best of luck to you.
Hey it worked! I just want to say when I first started on here you were one of the most constant sources of support of them all, it's no doubt you are finally on your way at last to SVR. you never whined nor complainned and always are such a great friend to have.
I'm so glad at last I got to post on your happy thread!
I am happy for you and so relieved to see the new treatments are really working! I just wish they were easier for people to get through.
I travelled 3 hours each way to my physician and would not have stopped seeing her for anything, but the whole day trip was definitely a big event every time I went.
Looks like this is the beginning of the end of the struggle with hepatitis c for you. Good Luck as you continue on your way to SVR.
i did work out side the home as a private chef cooking for a family of four during tx. i would shop and go to their home 4x weekly and cook for about 3 hours. a few times i had to sit down and the other employees in the house were worried about me as i looked real sick. now the tell me! it was wierd cuz every thing tasted nasty! i would not have been able to go to a real job 8 hr days with the low numbers so i sure hope you are covered for the procrit. u are a great inspiration! keep up the good work dear. best, babs
You go girl!!! The next time I head out for my three hour trip to doc (includes a ferry ride) I will think of you and if you can do it, I can do it...I was found to be und at four weeks, it feels good...
Wow, I see some old names here. Thanks Andiamo and ProActive and some others who treated when I did before. And a big thanks to all you guys treating with me. We are really doing it, aren't we. This is so exciting. As much as I hate these drugs, I am happy to be a part of this fist wave.
Special note to goofydad
Yeah -- what is it about you Californians, holding my QuantaSure hostige? I mean, if it comes back smelling of pot and walking in Birkenstocks, all the better, but can't you fly the results back instead of walk them?
On the labs, the 2 week VIC Quanta Sure was a special request. Willing suggested I get it and I was surprised the doc okay'ed it. The level of the test is 2 IU so I suppose I might have had 1 1/2 IU or so, but I would call that UND. The 4-week VIC lab was the originally scheduled HCV RT-PCR which is not as sensitive but has a faster turn around (Done right here in good old Texas). The test only can detect down to 7.1 IU. The wording "HCV Not Detected" was printed on the test results. If there was virus under 7.1 it would not be detected. I think I am pretty safe to say both were UND but the QS gives me a better sense of security.
By the way, they are cutting all new lab orders for the QuantaSure for the rest of treatment. I don't care if California eats them for a couple of weeks. I still like that test.
brianmo __ A Ferry????? Holy cow, hope your stomach does not have issues on tx. That might be tough.
babs - how funny, cooking with no sense of taste. Glad you made it thru that. What a cool job
nygirl - glad they got the system fixed and you can post. I had to break out the Medicated Gold Bond this morning (itchy hot spots) and thought of you!
ninja - I am in Midland -- the heart of the Permian Basin oil field and in the middle of a horrendous drought. Where are you?
Congratulations, frijole! I am so thrilled to hear of your success with VIC! I too will be starting VIC next week and hearing such great news truly inspires me and gives me great hope that this work for me also. I hope you had to two helpings of your favorite ice cream! :-) Way to goooo!!!
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