First it was the 64 week VL 'blip' of 18 IU/ml. The good news is the 68 week VL retest came back und <5! A breather. (For those who are continuing to read and don't know me, I'm the caregiver to my husband stage 4, geno1, doing 72 weeks.)
But less than a week's reprieve, and I'm getting slammed against the wall again. Hubby's nurse called today to report that his AFP was not good: six months ago it was 25, three months ago it was 46, and last week it was 128. (We haven't seen numbers like that since his HCC re-section in 2007.) The nurse mentioned 'tp' again for the first time in months...
And here it was my husband was thinking he could go to 6 month intervals between CT-Scans, but the lab results are dictating otherwise. It's good yet somewhat unsettling when you're told the doctor's booked solid for the month but he'll squeeze you in next week.
Has anyone had AFPs in the hundreds with good outcome? (Besides beloved mike&walrus who went to TP ... I know it's a long stretch here, but wondering if it's not so uncommon for cirrhotics to have triple-digit AFPs in the absence of tumor...)
Back on the not-so-merry-go-round,
PS: Anyone familiar with des-y carboxy prothombin blood testing?
It's encouraging to know that high fluctuations do happen to people here even in the absence of tumor. I did ask his nurse about additional blood testing (AFP L3 and DCP), but she deferred me to wait until we meet with the doc next Thursday. CT Scan is now scheduled for Tuesday coming, and while I'm certainly hopeful and expectant for a good outcome, I'm also preparing myself for all the possibilities -- including the reality that even the CT Scan may be inconclusive. Thanks for your response.
What you say is very true -- my husband's 2007 hcc was detected because his AFP was >2000, so it was a straighforward diagnosis. The disturbing flip side is that 30% of the time hcc's don't impact AFP -- yet another insidious trait of this nasty virus. Really glad you're free of it...! Appreciate your good wishes.
Hey Eureka I am SO glad that it was just a strange false positive like I had after treatment. That is such great great great news. I don't know much about AFP but my mom has had elevated AFP for many years (20 or so) and undergone every test known to man with no results. Then about two years ago it just went down to normal out of nowhere. I'm just going to go with the fact that you're going to get lucky again and like that first 'blip' it will go down too :)
Thanks for sharing that info about your Mom -- it definitely helped my husband to think about the good possibilities more, as well as the bad. It's been really tough on him -- this added news on top of tx brain-fog is really doing a job on his focus and concentration! And I'm going with you on that one: I really hope you're right and it's just another big fat crazy 'blip'. Big hugs to you. ~eureka
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