Hi @hello1234, good and bad news. WBC looking good up during the week of 10/24, WBC=5.2. We got the results on Nov 2 and on Nov 4 he got his dental work done. Fortunately, no major issues resulted from postponing dental work; hubby doesn't need to return till next year for checkup.
Then on Nov 4, the same day of dental appmt, center posted lab results for week of 10/31 showing CMV has returned!!!! So nurse says to go get dental work done, then to restart Valcyte that evening. Now back to treatment dose, 900mg b.i.d!! This will be the 3rd time dealing with CMV and the nurse says it does happen when CMV recur so quickly, but very unusual. I'm getting very discouraged because I had hope the CMV antibodies would help fight the CMV, if it returned. I have pushed for the new drug but the center is hesitant because it's "too new" and "very expensive" . Can only get the drug directly from manufacturer, not available thru 3rd party yet. The next alternative is IV Valgancincloir but they would prescribed only if very symptomatic. My husband has never been sick while being CMV positive(cmv PCR > 200). His symptoms are lethargy and leukopenia. So they are expecting his WBC to eventually tank.
Meantime, nurse says it's OK for him to go in to get his flu shots while his WBC has not tanked yet. Given time on Valcyte though, his WBC will eventually get to very low level and then Neupogen shots would be required to bring up WBC. He has a colonoscopy due in Dec and I was going to schedule it but now with CMV and expecting WBC tanking, I'm going to have to hold it off, or any other medical/dental procedures for that matter. It is so very frustrating and I don't know if he will ever get over CMV. It's persistent and his body is just not able to defeat it. I wonder how common it is for CMV to return multiple times. I wonder if longer time is needed to stay on Valcyte, after getting CMV undetected labs. The center always says after 3x undetected it's OK to get off Valcyte. I'm rambling but hope I'm making sense!