Continue treatment or not???

[tracyhopkins7]

HELP - this is my first time posting a question although I have been observing for some time.  I will try to be succinct as it seems as though you all are so knowledgeable!!!  I am 46, weigh 215lbs, @ 5ft 3inches fat as you can see.  I started treatment for my Hep C Genotype 1A with a plan of going 48 weeks 1200 Riba/day and Interferon 1x/wk.
Viral load started at approx. 700,000 oh by the way my cirohsis (I can never spell that) is stage 4 of 4 - that ***** right?  OK - onward...At 4 wks my viral load went down to 3,600 and I am now at week 12 and it is still detectable at 99.  I am not having horrible horrible side effects but my body is not tolerating too well the meds - my WBC is 2.2, my RBC is 3.27, hemoglobin 10.6 and hematocrit 31.4 - ok so studies say to lower riba by 200mg if my hemo goes lower than 10 and hematocrit lower than 30 - I know it is a fine line but my nurse practitioner has lowered me from 1200 to 800 and ordered me to discontinue my interferon because my WBC is so low.

She advised me that I COULD continue on w/tx if i want to and try the meds to increase WBC and HEMO (Procrit) but she said it is not a good sign that I am having to be boosted up by those meds - as I will have to continue them for the duration of tx.  So as of now I can take only 800mg riba and NO interferon for at least 2 weeks until my #'s come up.

The main question and most troublesome of all is that she told me that they now know that anyone who is NOT Virus non-detectable at 12 weeks has only a 1% chance of svr post meds which means 99% chance of virus return.  I am having a hard time finding this information online and wondered if this is something that others are experienced with?  She said she did not want to take away all hope but she is a #'s person and if it were her (which she acknowledged it is not) it would be hard to go through so many weeks of hell just to have the virus return.  She said that she has NEVER had a patient who had ANY virus detected at 12 weeks complete tx and have SVR???.

Of course my question was well will it not do any good to have the virus out of my system at ALL like even for a year?  OK so those of you who think like I do know that my real question was will it buy me another year to live if it is gone for even a while?  She said no.

So I am considering getting a 2nd opinion but before I do that I wanted to check in with the people who are living the issue like me and who are really the most in the know.  Even though I have been watching from afar your comments and conversations have boosted me far more than I could say.  Thanks for any help or info you can offer.

Tracy Hopkins

[newleaf09]

Tracy,
I am just amazed at all the responses you got in such a short time, almost all from women.  You really struck a chord with us.  We want you to do well and we mostly disagree with your care.  We are NOT doctors but boy, this must be one of the best-read study groups I've ever seen.  It's hard to keep everything straight in a post and impossible for us to understand all of the factors involved in decisions.  It takes at least 12 weeks to comprehend everything that's going on and develop the confidence with medical personnel to even question things.  Please keep in touch, we'd like to know how everything shakes out.

Newleaf

[newleaf09]

Neulasta costs $3-4000, drives up neuts within hours and the effect lasts at least 3 weeks and requires insurance approval.  My ins. co. needed to fax a form to the physician and then get it faxed back to them.  I got both neulasta & neupogen approved. Be proactive. My med staff people were university people who weren't used to dealing with ins. cos. and were a little slow.  Yours will do better but it's worth calling both the ins. co. and the doctor's office to be sure the paper work is acrtually bouncing back and forth and not being held up anywhere.

Trinity, I'm sure you are right about varying cut-off levels.  The drug companies are probably a little cautious with study patients so their data will look as good as possible.  I read a study that said keeping neuts up was not important because in their study group of like 110 people, no one got an infection.  I think they just had a lucky group.  You and I prove it's worth watching.  Bad enough to feel lousy for months but to be certifiably sick on top of it is unbearable.

[portann]

I agree with you that it's very odd the nurse told you to reduce your riba by 400 mg in one shot. Another red flag, even setting aside the issue of dose reduction at all. Combined with her 1% comment, it would leave me sleepless AND speechless in Seattle. I think she's mixed up, unless there's some information we don't have.

Good work on all your phoning today. I found it really tough to make things happen during tx, so I'm impressed at how pro-active you were.

My medical team was on the ball, so I didn't have these dreadful hassles.  

Trin had to muster up the energy (working full time) to go see another hepatologist a very long drive away, whose opinion overrode her local doctor's. Her local doc had dose-reduced her at one point and then didn't want to extend.

As for your weight-based riba dose, this is what I calculated for you previously:

1) Starting dose of ribavirin, 12.28 mg per kilo (1200 mg / 97.7 kilos)

2) Reduced riba as of now, 8.18 mg per kilo (800 mg / 97.7 kilos)


I may be wrong but the ideal dose is 13 to 15 mg per kilo, at least until reaching UND.  

Someone may want to check my calcs and comment on whether 12.28 mg/kilo is or isn't weight-based. It's close to 13 but not within range.

I know Rain is on more riba than you and seems to be hanging in there pretty well.

1400 mg would put you at 14.32 mg/kilo, less than I was prescribed (17.5 mg/kilo). Trin takes even more and is on a 72 week tx program.

Anyway, there is more to your treatment than just riba but I'd sure want to know why I wasn't started on weight-based dosage as a 1A, stage four.

I hope someone can offer some explanation other than this being a plain mistake. Do some doctors steer away from more than 1200 mg for other reasons, regardless of weight?

Please don't get discouraged. It's a lot to think about but as you said, do it in steps.

Jenny really knows her stuff, so please try calling the number she gave you:

Jenny:  "If you need help call the Hepatitis Education Project and ask for Michael. Tell him Susie sent you. They are on Western Avenue in the Maritime Bldg. [phone]."  

[nygirl7]

Take the meds until you see the supervising physician at least.

1200 has to be low for you because - I was taking 1000 and I was 5'7 120 pounds, 200 isn't any difference really in that regard.  That is what people are trying to say they are confused why they started you on such a low number and then why they would reduce that further when you are 4/4.

My pharmacy was excellent at helping me get my procrit approved. In fact my insurance wouldn't approve but the pharmacist helped me get the epogen approved (same thing generic). Epo costs $6000 a box for ten vials and I was using 2 40s a week so.....sometimes they can try to hold you up.

Take the meds or you have a zero chance of success.  That's not even a joke (and I tend to exaggerate a lot).

[tracyhopkins7]

Thank you for your input - Refering back to my original post i dont think that the riba was underdosed from beginning - I have been on a level of 1200 from the beginning which is what I put in my post - the question i had was even though the recommended reduction comes at hemo 10 and hematocrit 30 my numbers were still above that.  And even if she wanted to reduce me i was curious why she reduced me by 400 instead of just 200 when it says that you should go in 200 mg incrfements. Sadly I did not do my majore research until lastnight and I saw the nurse just yesterday.  She prescribed the neup and procrit yesterday - waiting for insurance approval.  4/4 is a consideration in volatility of #'s i do know that AND with my #'s at 10.6 and 31 (then i did a shot 12 hours after those #'s) she assumed that they had probably dropped further - however as i said numbers had gone up so not sure that was a good assumption.  SO I have called every hepatologist I can find with no luck on being seen quickly.  I HAVE managed to at least get an appointment for Monday afternoon with my NP's supervising physician who is a gastro.  Not ideal I know but at least a step.  I will continue to make calls today to see if I can find someone else but given that it is thurs already monday is pretty fast (not for me but in dr world).  Tracy

[Trinity4]

Each medical team has a different threshold.  I had similar problems with reoccurring bacterial infections before Neup and haven't had any since taking it.

I don't think skipping doses is advisable as recommended by her NP.  The Neup is available and peg dose reduction or skipped dose is not necessary.

You have mentioned your kidney infection a number of times and I have mentioned my bacterial respiratory infections and number of times but this is exclusive to us and doesn't necessarily apply to everyone a supported by medical data which states people with low ANC due to HCV treatment do not have more infections than those who do not have low ANC.

I do believe she needs to be monitored very closely, but her NP in my opinion is an idiot.  She does not think outside the box and her overly conservative approach to Stacy's numbers may very well be detrimenal to her attaining SVR.