Week 20, Don't give the kitty a marshmallow...

Week #20 on triple tx with VIC.  My ANC became a concern last week at 600.  Fortunately, it has doubled now to 1200.  My HGB, however, has taken another hit and has gradually been falling again (11.7, 11.3, 11.0, and now 10.5).  They know it is the RIBA that is doing it, so they have reduced me again.  They are not pushing Procrit, for various reasons, yet.  I will know more when I meet with my new doc in a couple more weeks.

Completely exhausted.  Have not been getting enough sleep because my cat is keeping me awaking, bopping off the walls.  She usually gets sleepy before I do.  Finally figured it out.  Well, I sometimes give her minimarshamallows to bat around the house, and sometimes she eats them.  Must have given kitty quite the sugar high!!  I have learned a good lesson and have put her in kitty rehab for marshmallow addiction :)

Update on side effects.......I am still itchy but better.  Have to sleep with the house cooler, even though it is cold at night.  Have to remind myself not to scratch.  I have some brain fog going on for sure.  Not able to focus for long periods of time, or remember some things.  Headaches. Bad mouth taste, but I'm working on it.  Nausea.  Vertigo, again.  Cranky.  Mentally tired of tx, but thankful to have made it this far.  Concerned about the outcome.  Still not sure how long I will be treating exactly.  Curious to hear what the new doc says.

Keep up the fight cyber-people!!  Thanks for being there/here.  It matters.
Bee

[HectorSF]

Hi. Just wanted to encourage you. Reducing the ribavirin will bring up your hgb which I hope will make you feel better. You are well into your treatment and reducing riba will have no effect on your SVR so your doc is doing the right thing.

Your history:
VL 8/2011 = 10,700,000 (pre-tx)
week 4 (SOCs)  9/2011 =   329,000
week 8 (SOCs + VIC) 10/2011 = UND  IS THIS TRUE?

Here are the guidelines for determining duration of treatment:
"Selecting a Treatment Regimen: Response-Guided Therapy"
http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20New%20Agents.aspx

'Treatment-Naive Patients (Boceprevir).'

'For treatment-naive patients without cirrhosis, HCV RNA measurements at Weeks 8, 12, and 24 are used as the decision points for response-guided therapy.

For early responders (HCV RNA undetectable at Week 8) who maintain undetectable HCV RNA at Week 24, triple therapy can be discontinued at treatment Week 28.
For late responders (HCV RNA detectable at Week 8 but undetectable at Week 24), treatment with pegIFN/RBV and boceprevir should be continued through Week 36, then followed with an additional 12 weeks of pegIFN/RBV through treatment Week 48.
Across both the nonblack and black cohorts, SVR rates were 75% in the 48-week arms and 66% in the response-guided therapy arm. This was considered a potentially meaningful difference, leading to the recommendation that the boceprevir phase should consist of 32 rather than 24 weeks.'

In summary, how long you should treat really depends of week 8 viral results and any reoccurrence of viral load sine then.

Best!
Hector

[suezeeque]

Hmmm...  My hemoglobin was 10.7 at one point and reducing riba wasn't considered.  Last time (5 weeks ago) it was up to 11.1.

When will you be seeing the new doc?  I'll be going on the 20th to find out how long I'll be treating.  Last night was shot #23...

[beeblessed]

Hey Hector!

"Across both the nonblack and black cohorts, SVR rates were 75% in the 48-week arms and 66% in the response-guided therapy arm. This was considered a potentially meaningful difference, leading to the recommendation that the boceprevir phase should consist of 32 rather than 24 weeks.' "

Thank you.  This gives me more clarity and is news I needed to hear right now :)

"In summary, how long you should treat really depends of week 8 viral results and any reoccurrence of viral load sine then."

Not as confident in this because of my 12 weeks results and also just the mere fact that I was reduced for so long, increased only slightly, and now reduced again.  I think because of that, and the fact the docs seem to be more cautious because of the African American factor, makes it more of an "up in the air" challenge for them to treat me.

Thanks so much for the support Hector.  Today, I really need it.  Processessing information the docs give is more of a challenge for me right now, so it does help to have something to compare it to.

Blessings,
Bee

[beeblessed]

Hi Sue!

Since they have been monitoring me for Anemia, since I had to have the transfusion, they know it's the RIBA that is affecting my HGB numbers.  I go back to the doc on the 27th.  Congrats on shot #23 girlie!  Keep kicking butt.

Bee

[working dog]

if i reduced the riba my hgb would go up....my doctor didn't reduce riba until i was low to mid 8s...who knows...maybe too late...good luck bee....billy

[Anne1717]

My HGB hovered around 9 for the last 2 months with no Riba reduction or Procrit.  It was difficult but nice not to take another shot.  I did ask for a reduction was was denied.  However, I did  on my own go from 1200 to 1000 the last 2 weeks.  Although it did not help with the HGB, I did feel better.   I am NOT saying that is what you should do but I was UND from week 2 so I felt it would be okay.  Additionally, I was on 1200 mg despite my starting weight of 135 and I had gone down to 115 and was not being monitored.  It allowed me to finish.

Best of luck - you are almost done!!!  

[beeblessed]

Hi Anne.  I've been really sensitive to the RIBA and guess I can't handle much.  So as much as I want to be on more, it hammers on my system too much.  Don't think I am near the end just yet, as I 'may' have to do a full 48 weeks.

Thanks Billy!  I'm glad you're not dealing with the sides anymore :)  I do another VL check in a few weeks, so that may be the determining factor on length of treatment (but I am guessing).

Thanks everyone :)
Bee