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Help making sense out of treatment situation

Hello Dr. Dieterich,

I've just started Week 31 of treatment, Geno 1 - stage and grade 1 and have been UND since the 6 week PCR.  

I'm in a clinical trial which has a hard and fast requirement to reduce INF at an ANC level of below 1.5 and an HGB level of below 10.0 regardless of how well I'm physically tolerating either.  

When my hgb dropped to below 10.0 at Week 15, my trial team responded with epogen injections that eventually brought up my hgb to over 12.0 and out of dosage reduction range (had one week riba dosage reduction at Week 15). Now I'm back on the epogen for what is planned to be bi-weekly dosages of 40,000 to keep me from dropping into dosage reduction range.

My thyroid when hyper at around Week 24 or so.  I was put on beta blockers, tested and it seems that I'm still hyper but I'm levelling down and that's being monitored.

My liver enzymes have risen to higher than treatment baseline amounts, which were not that high to begin with in the 40's but are now higher than that after dropping and holding in the teens shortly after start of treatment.

As a result of various of the above, my team is now giving me CD4 testing.  The first one this week has me at 200.  I was informed that if I dropped below 200, they would pull my interferon dosage entirely for an indefnite period of time, I'm guessing for as long as they feel it's required.  I go for CD4 testing again and I'm a bit nervous about that, being one digit away from having my INF pulled completely.

I have been on 25% INF reduction from Weeks 25 through 28 - 4 weeks - due to an ANC level of 1.0 which would not normally require an INF reduction but which does on the trial.  I got back to normal INF dosage for one week and then my hgb "tanked" from 11.5 down to 10.4 and my ANC went down to 1.0.   I have again been on INF reduction for Week 30 and 31 and indefinitely until my levels come up again.

I will have to continue in the next post.

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Avatar universal

My lymphocytes bounce around at .27 to .3 and thereabouts which also concern my doctors and were also a consideration when sending me for the CD4 testing.

That's the background and I'm sorry for so much information.  I felt it was important you had all of it to be able to answer my question adequately.  

My questions -

I asked my treatment team to put me on neupogen so that my ANC and lymphocyte levels would come up above trial dosage reduction requirements.  I also feel the neupogen would help my CD4 counts come up and move me away from my team's viewpoint that anything below a CD4 count of 200 would require an INF withdrawal.  My treatment team has refused my request for neupogen, not because it is not allowed, but because they feel a) it will not help, b) it is risky to use neupogen when I have what they feel is too much going on with me already, c) I am a little too far away for them to monitor me adequately - I live approx a 1-1/2 hour drive one way and finally, d) that it is not a risk to reduce my INF at this stage of my treatment - Week 25 onwards.  I personally disagree with them on all of those to be honest.  I feel that a) the neupogen will be fast acting and will make a difference quickly b) the risk is minimal and I'm personally prepared to handle the "sides"  c) that I will not take unnecessary risks with my health even at this distance and d) I DO feel that reducing my INF at this stage on an ongoing basis increases risking my successful outcome.  Week 25 is halfway through treatment .. I feel I need my INF at full as much as possible for as much of the time as possible.

As a result of having my INF reduced for six weeks out of the last 7 or 8, I'm beginning to find this quite worriesome.  I feel that neupogen is the next logical step and certainly a better option than ongoing INF reductions.

I confess, trying to make sense of ALL of these parts and to have a logical rather than emotional response is a challenge.  

Can you please give me your professional assessment of what an INF reduction / stoppage means for me at this stage of the game and if neupogen makes as much sense at this point as it seems to make to me?

Thank you .. for your time in wading through all my words and for your opinion, which I greatly appreciate.

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