Congrats on your 12 week UND!!
You'll get more answers on your other concerns you mentioned, if you post a new question in the forum. Best to you! You are almost half way there!
I started my rib and shot the same day. Then I started my victrelis the morning of the 5th shot, My 4 week blood I went from 6 million viral load to 1 million. My doctor was real upset that it was high. I went in at 8 weeks lab result and he hadn't ordered the vl. Said insurance only would pay for 12 weeks vl. I got results for 12 week lab and it is undetectable. I am on 14th week and he said I have to go to 32 weeks. I am tired all the time. My second month I was so tired I went from bed to couch. I was going to the gym 6 days 2 to 3 hours a day. I started going for an hour a day in 3rd month. Then I'M worn out for the day. Has anyone else had this problem?
I was taking iron till my regular doctor checked me and I had over 2 times the high amount. Said my diets fine. The anemia is in my bone marrow from the drugs and I could do nothing to help it! I also have been drinking coffee everyday even through I hate it, and am able to fall asleep right after!
Spoke with my training nurse this morning. Since I started the Pegasys at night and the RIBA the next morning.....she wants me to do the 5th shot as planned and then introduce VIC the next morning (so Saturday). Feeling a bit shaky again this morning and a bit slow moving, wanna curl up in a ball and go back to sleep. But I am at work, and my boss might point and laugh. Hope you got your meds straightened out too.
Thanks again everyone....Enjoy your day
I spoke to my doc's assistant. She said that even though I am doing labs tomorrow, they 'might' not be back in time for my appointment next Monday, but that that was OK, because the appointment is to go over side effects and check for (signs of) anemia. She said they would email me the lab results if they weren't ready that day.
As for the Victrelis.....she said I should start on October 1st, because they DO want me to start in the morning. And I didn't like the idea of having my first and second doses at work, the very first time. I did put in a call to my training nurse, so I will have 2 opinions. I will post an update when I hear back from her, but based on the forum responses, my guess is that she will say the same.
Thanks for your input everyone!! I appreciate you! Who knew all these fine details would be up to the patient to look out for?
Thanks for correcting me of course I meant the morning starting the fifth week, not the fifth day. We didn't wait for results to start the vic in the trial. I did have a pcr every 2 weeks for the first 20 weeks though.
Congrats on being this far along! My doctor says I will start Victrelis on the morning after shot #5, which will be a Friday night :)... Good luck!
Thanks Frijole :) I scheduled time to do my labs, based on the appointment my doctor's office made for me. But I see now, that I should really wait to do the blood tests towards the end of the 4th week, and then see my doc a week later (to give time for results to come in). It's always hard to get an appointment with my Hepatologist, so we will see what happens.
Specta -- Since you did blood tests morning of the 5th shot, did you have results the same day in the trial?? Or did you start the VIC/BOCE and get your results later?? Thanks for your help.
"Will -- I don't understand what you meant when you said...."however if someone did not do their 4 week PCR till the day of the evening 5th shot then you wouldn"t want it to reflect the Vic...correct ?" "
After your 4 weeks on lead in with interferon and ribavirin you need to get the viral load test -- prior to doing the Victrelis.So you would want that PCR on day 7 of the 4th week, and start the VIC on day 1 of the 5th week. Now, as can do pointed out, taking one pill in the morning may not impact the test and they are only looking for a 1-log drop (moving the decimal over 1 from your pre-treament vl - so if your pre treat vl ws 2,000,000 a one log drop would be 200,000. (a 2-log drop would be 20,000).
beeblessed and aj - you are just one week behind me. I am glad for the company!
frijole
Thanks, cando, I have been talking to aj about this and I thought she had the wrong date. Hang in there aj. I get my Victrelis be specialty pharmacy too and they have to pre-authorize but I will be darned if I can figure out what their criteria is for preauth. They sent me the VIC the day after they sent the first batch of INF and RIBA so I had it for a full month before I needed it. I have only been taking it for 3 days so far but started last week to order it and it was authorized Friday and will be shipped Tuesday.
Beeblessed -- I started my VIC on the morning of my fifth shot, having had my lead in PCR the day before -- that was last Thursday, and I am hoping tomorrow to get those results.
I am pretty sure I must be the only one taking VIC with my treating doctor. His medical assistant typed up a lovely chart for me with every CBC and PCR and the end date for the INF and RIBA but no where on the list did she even mention the VIC. I was pretty surprised about that.
will - it is odd that Shiffman says to start the VIC the day after the 5th shot. I guess he also has the patient start the riba after the first shot. I was surprised that on the typed list I got from the doc's office that the riba and Inf are stopped on the same date( July 20) I would normally think to do the riba for the next 6 days.
frijole
in the trial for me morning of the beginning of the fifth day gave the blood for pcr and other blood values, was given the boceprevir within an hour afterwards, took my interferon injection a few hours later.
Thanks Can Do, Thanks Will. Interesting discussion.
Will -- I don't understand what you meant when you said...."however if someone did not do their 4 week PCR till the day of the evening 5th shot then you wouldn"t want it to reflect the Vic...correct ?" I know what the PCR letters stand for but I don't understand what it means to, "do their 4 week PCR." Please explain. Thanks so much.
AJ -- We will get through this, don't freak yet. But defiinitely start the ball rolling tomorrow.
I am going first thing in the morning.have to get pre authorization first and then have the med shipped to me by special pharmacy as per my ins co. hope.i can finagle all this by friday. Getting stressed. very frightened if this drug. Thanks
Best to call your doctor and remind him your 4 week lead in ends this thursday and you should start the Vic on friday the 30th, looks as if he's a week behind. Nothing wrong with a 5 week lead in, just need to extend tx by a week. Only problem i see with that is getting the extra riba and one more shot. Talk to your doctor soon about all this.......... Hang in there.
I started my first shot sept1, and started.riba.that nite. I take.my blood test.thursday. Fith shot friday. My dr told.me to start the vic oct6. I dont even have the meds yet and now am worried.i wont get them this week. If I start next week is this a problem .oh.no
Maybe not, don't know how much it matters since one is only looking for at least a one log drop to begin the Vic
I see....however if someone did not do their 4 week PCR till the day of the evening 5th shot then you wouldn"t want it to reflect the Vic...correct ?
We had our 4 week pcr the day before we started the Vic and took our 5th shot.
What I am thinking ....if you were to have a 4 week PCR on the day of(just before your 5th shot) then you would want it to reflect it to be just the lead in and not the one days VIc.
hey cando...yeah I know ...be nice if they all got on the same page huh
I guess to start it the day of the 5th shot or 12 hours later ..you would think wouldn't make any difference anyway.??
Should add he feels the same way on doing just SOC or Incivek, by doing the shot in the evening and starting the pills the next day.
Yeah i read that by Dr. Shiffman, the only doctor i've heard say that. Wasn't the way we did it in all the trials.
According to the CCO (directives to treating physicians ....4th slide -8th section) you would start the Vic on the morning after the evening of the 5th shot
If you haven"t registered it is a free registration and it is an excellent source of info. Good luck....
Will
.http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/Battling%20HCV/Interactive%20Virtual%20Presentations/Adverse%20Events.aspx