POST TX PCRs and CBCs

As you know...basically I've taught my doctor 90% of what he now knows about HCV during treatment.  It basically was a good thing because I was able to do just about whatever I wanted to during the course or I would have been treated - text book.  I didn't want that!!!

Anyway - for those of you who have the experience...what do you suggest for POST treatment PCRs and CBCs.

I'm going to get my bloodwork done on Friday morning (last shot Friday night).  I will finish the Riba on Thursday. 72 weeks will be complete on that day for all the meds.

I am still on Epo every five or six days to keep myself in the 10.5 range.  Once I ditch those pills - it will be important not to get too high a hemo, however I am LAZY after all this time and hate to have to go every week! What a bum!

Any advice you guys have from experience is a good thing.  I don't want to just listen to my doc read out of a text book and tell me well commonly we do...............

I want what is BEST without going completely overboard like I tend to do.

Two days to go! WAHOOOOOOOOOOOOOOOOOO.

Deb

[jmjm530]

Based on what you've told me before, my suggestion would be to simply write down the exact name of the test you want and hand it to your doctor. Then ask for 3-4 prescriptions for those tests and get your blood drawn at a local Quest Center. My guess is that the TMA I mentioned is the one that Dr. J uses, if not I'm sure it's equally as good.  In other words, take your doctor's questionable knowledge on sensitive viral load tests out of the loop in this regard.

-- Jim

[cajunlady]

WOW WOW WOW WOOOOOOOOOOOOOOOOW girl it has got to feel great knowing you are winding this 72 weeks down.  Bless you and all your strength.  It has been a long long road for you.  You will start to feel better real soon.  It is AMAZING what NORMAL feels like again.  Woooooooo Whoooooo!
You so deserve normal again.  It has been way to long for you.

Good Luck on everything and please keep us informed.

HAVE A GREAT WEEK AND WEEKEND!!!!!!!!!

Cajun

[returntosender]

Wow its hard to believe you actually got through this.  Very impressive feat! You know my story with post tx PCRs
- got a 3 month post tx Heptimax (undetectable) and then at 6 months a regular Quest PCR which came back positive.  I tested again the following week at Quest to make sure and it came back negative.  I retested twice more with NGI UltraQual and Heptimax and both were undetectable.  

So, if it were me, I would get two tests from different labs with the highest degree of sensitivity. I really like the NGI/Labcorp UltraQual test and from what HepResearcher says they have the highest level of contamination protection available.  I think they do one part of the test in one building and the other in another building.  

Also, I would get my first follow up viral load at three months because there are still a lot of drugs in your system for at least that long after treatment. If you are getting regular liver tests you will see your enzymes going down and hopefully staying down.  To me, when I got the false positive result, I knew it was wrong because my enzymes were so low and they were never low when I had active virus.   That was somewhat helpful and pushed me to get a retest.  Who knows what would have happened if I didnt retest - probably would be dieting or popping Riba now for no reason. LOL   Very happy for you to finish and I am expecting good results for you as well.

[friole]

I got weekly CBCs after tx for maybe 3 weeks, and di Neup and Proc accordingly.  Then I had a couple more CBCs maybe 2 weeks apart and finally when the numbers looked good , no more.    

I did the first post PCR test 7 days after the last INF -- or, the day after or of the last RIba.

Is your head spinning?  Wow, it must be like getting reborn!
frijole

[jmjm530]

Regarding PCR's -- get either Quest Diagnostic's Heptimax, or any other PCR and/or TMA with a detection limit of <5 IU/ml. As an alternative to Heptimax, the one I like is Quest's "HCV RNA Qualitatitive TMA". This test uses Bayer Versant technology and, regardless of where the blood is drawn, is only done at Quest's Nichol's institute at Cupertino, California.

A suggested schedule for post treatment tests would be to get the first test at EOT (day before last shot). Second test at four weeks post treatment and third test at 12 weeks post treatment. While people start counting the weeks differently, a conservative way to count would be from the last riba pill as opposed to from the last shot.

The four week post treatment test correlates around 90% with SVR and the 12 week post treatment test correlates around 98%.

All the best luck with your results!

-- Jim

[jmjm530]

FWIW I was told to ditch the epo with my last riba pill. Since riba and epo both take around the same time to kick in, it makes sense.

[anise]

You are almost DONE!!!  I can't imagine going for 72 weeks or is it 78?  You are going to feel soooo much better, (although you most likely adapted to the treatment).

I was thinking what I could add to your request of after treatment stuff to do.  (Since I am an easy type to treat), what  I did was keep drinking the heck out of H2O.  I also tried to eat healthier but that was tough also.  Somehow I sense you will know what to do.    I slowly weaned myself off of drugs and helper drugs, that was tough in itself.  I am now trying to slowly get off of paxil.

I wish you a UNDETECTED!!!

[Pdilly]

My I can't believe you are almost there.  Ever since I have been on this board you have been treating, loosing your hair and at times your sanity at your job.  You have hung in there and I know it was not easy.   Congrats lady on a job well done.  Heres to you and SVR.

[anise]

JimJim, are you SVR?  I thought you were but in your reply to NYgirl you said 24 (SVR)?  

[jmjm530]

Sorry for the confusion. The "?" referred to my week 18 viral load test. I think I took one at week 18 post treatment but not 100% sure. I've been non-detectible on all my viral load tests -- knock on wood -- since week six of treatment. My last non-detectible test was at 36 weeks post treatment, so yes, I am SVR.

-- Jim

[nygirl7]

Jim after all you went through - it's only fair. Has it REALLY been that LONG now? Wow. It's unbelievable.


Thanks for the advice guys.  I guess I'll talk my doc into the most frequent and most aggressive tests that I can. Why is that shocking?

He has never ordered me a TMA however I'll tell him that is what Dr. J. used and that will help.....Debby says doesn't seem to work NEARLY as well hahahahahaha.

It's too bad we can't all open up a HepC clinic. Can you imagine?  We could be so helpful to people.

Well - I can always keep praying for the Mega Millions and Powerball.  ;)

[nygirl7]

Said: Also, I would get my first follow up viral load at three months because there are still a lot of drugs in your system for at least that long after treatment



You know what - I never thought of that but it's true.  The meds will still be on board in a major aspect after only a few weeks. From what I've noticed though a lot of people relapse right away.

Will I be able to CONTROL myself is the question?  It's SELDOM been what is BEST for me and more how much willpower do I have. There you go and I have the nerve to complain that I have THIS disease?

With a bit more "willpower" I wouldnt!   ;)

[copyman]

congrats girl, life starts all over for you soon enough. i pray for your svr, you deserve it as much as anyone i have ever met on forums. you have helped many. when was your last pcr done? best of luck

[jmjm530]

I should add that if you start getting antsy between weeks 4 and 12, there's no reason not to get another viral load test. That was the advice from my doc. What I ended up doing was testing post treatment at weeks 3, 6, 12, 18?, 24(svr), 36 and 48 (upcoming).

[aiuta]

Congratulations on almost being done!  You are one strong woman and I greatly admire your toughness and tenacity.  All my best, Aiuta

[wMich]

I would think that some of this depends on your ins/ability to pay but form what I read, the more the better. Thus far my doc has done PCRs at the end of Tx and at 6 months post (26 weeks). They screwed up mine a little and did a less sensitive PCR (>615) at 26 weeks and I had them retest with a Heptimax. I got CBCs at the end of Tx, 12 weeks and again at 26 weeks. Above all, congats on your Tx coming to an end! You have had a rough go of it compared to many, I know. I'll always think of this board, Tx and you whenever I smell Gold Bond Triple Action :) Best of luck!     - Lee