Oct 26, 2011
Worse than some, better than some......an old expression to remind one's self to keep things in perspective. There will always be someone better off, and always be someone worse off than me. It's how I handle the middle that counts.
(Doing triple tx with Victrelis) Today I did my week 8 labs, and my nurse had me have the lab do the CBC/ platelet /diff -- STAT. She called me after work with the results: HGB - 9.1; Hemocrit - 28. So...Anemia. Women's minimum should generally be around 12; men should be 14; anything below a 10 is concern for Anemia. Too early for the Viral Load results, but she said everything else looked okay. She spoke to my doc and based on my situation (my age, probably my race, my pre-existing issues), they decided to reduce the RIBA until Halloween, which is my next appointment. Most likely, I will re-do labs that day to see how I am doing, plus they want me to feel better between now and then because.......it's almost that time of the month. (I know, TMI......but if this can help someone else in the future...) The reason this is a factor is because my past 3 labs have been done (ironically) at that time, so my HGB would be expected to be lower anyway. And since I am fatigued, weak (on and off), have brain fog now (confusion, forgetfulness and lack of concentration), and have Vertigo, the first plan is to reduce. We also talked about the possibility of blood transfusion. The nurse told me that the FDA has red flags about Procrit for patients other than those on Chemo. She wasn't saying "no" but wanted to let me know, and of course, everything will be up to my doc.
I am really pleased that I have made it this far without major sides, though the cactus butt was NO fun!! LOL. Because I have to do my 9-5 through this, I have to keep my strength up if I can. This is still way, way early in the process. I look forward to the rest of this week because I know I will feel better and be able to re-group. From here, I expect they/I will also time my labs differently to avoid that time of the month.
UPDATE: Oct. 28, 2011
Feeling much better this morning. Wuuu whuuu!! My guess is that it is a combination of things: RIBA dose reduction; been forcing meat and spinach the past couple of days; I generally feel better on Fridays; and went to the Chripractor on Wednesday for an adjustment to help with Vertigo. I have been able to focus pretty well this morning, and hope it continues. Shot #9 is tonight, then follow up visit with my doc on Monday, to see where we go from there.
UPDATE -- October 31, 2011
Still not sure what path we will take just yet. Feeling much, much better with the dose reduction, But still want to increase it again soon. Re-did CBCs today and will know the results tomorrow. Chances are, when they do increase my dose, it will be in increments, so as not to shock my body.
My doc says what they are finding is that more and more, people are not handling the RIBA amounts, which are weight based. But that even with reductions, the RIBA is still doing its job. They are having to do even more transfusions than expected, with patients on both Incivek and Victrelis. Every body's tolerance for Anemia is different, so they are gaging each case individually (within limits of course). Kinda makes sense. As much as I would love to go right back up, I don't want to go right back where I was. All the other sides I have experienced have been somewhat manageable, but the Anemia -- I had no control over that and just kept feeling worse and worse. Can-Do-Man said I could be Anemic from here on out. So I made certain to express my concerns to my doc and let her know I want to make sure I have THE best chances for reaching SVR, especially given the African American factor. She said that was her goal too, and I know she and her team are on top of it. Praying for the best. Thanks for stopping by :)
DECEMBER UPDATE! ...... It has been a long road since I first posted this.
Anemic at the end of October, RIBA & PEG reductions; Transfusion in November; December RIBA increase; Procrit added; HGB is back up to 11.7. YAAAYYYY!! Doing one more shot of Procrit tonight and that should put me back to where I started pre-tx. Very, very thankful not to be struggling with Anemia right now. This is week 17 for me. 11 more weeks to go, with a possibility of a bit longer since I had a slight breakthrough at week 12.
Thanks everyone for your encouragement and support.