should we be worried?

[shadowii]

Hey guys
dad has just gotten his second biopsy and passed day 100

he's had steroids for acute GVHD but is tapering them off
platelets are coming back up
hbc is 11 and vitals are good
initials results are not showing any sign of the cancers
but his wbc went from 4 to 1.6
should we be worried (they told us it could be because of the prednisone)

[DanL]

Shadowii,

Congratulations to your dad for surpassing day 100. May it be one of many milestones to come. All I can advise is that your dad asks lots of questions, takes his drugs as assigned, and trust the doctors. Blood counts can fluctuate a lot after transplant and are frequently drug and dose sensitive. The key at this point is to be sure that your dad avoids buffets and undercooked or unclean foods, wash hands a little more, etc. as is prescribed for lower white counts. I found that prednisone usually increased wbc, bur during tapering you can see unusual drops. Transplant is part art, part science, so expect adjustments.

[shadowii]

Shadowii,

Congratulations to your dad for surpassing day 100. May it be one of many milestones to come. All I can advise is that your dad asks lots of questions, takes his drugs as assigned, and trust the doctors. Blood counts can fluctuate a lot after transplant and are frequently drug and dose sensitive. The key at this point is to be sure that your dad avoids buffets and undercooked or unclean foods, wash hands a little more, etc. as is prescribed for lower white counts. I found that prednisone usually increased wbc, bur during tapering you can see unusual drops. Transplant is part art, part science, so expect adjustments.

its just hard not to imagine the worst scenarios I have to ask what were the signs before you knew you were relapsing?

[DanL]

its just hard not to imagine the worst scenarios I have to ask what were the signs before you knew you were relapsing?

To your question, all of my blood counts were dropping rapidly and I was exceptionally fatigued, and somewhat angrier than usual - not sure if that was a symptom. I had biopsies done every 3 months and the one that I had at that point showed chromosomal abnormalities, which confirmed a relapse.

[shadowii]

To your question, all of my blood counts were dropping rapidly and I was exceptionally fatigued, and somewhat angrier than usual - not sure if that was a symptom. I had biopsies done every 3 months and the one that I had at that point showed chromosomal abnormalities, which confirmed a relapse.

I see, thanks for telling me

[Hopeful]

Hi shadowii,

From experience, I have seen that prednisone causes a false rise in WBC's (leukocytosis).

So, I would not be concerned if his WBCs went down when it was discontinued.

[shadowii]

UPDATE

Biopsy came back: no presence of CLL or MDS!!!!

white count is same as last week but not getting lower (probably steroids and/or gvhd)

platelets improved by 20 points

this was such a long week

[DanL]

Great news that the biopsy came back negative. Hopefully blood counts will start rising soon.

[shadowii]

anyway counts are stable pretty identical to last week.
They are changing one medication to see if it is whats lowering the blood counts.

One annoying thing is he has mixed chimerism.
the myloid is now 100% me (which considering that's where the mds came from that's good)
but another line is like 73/27 ratio me/him

they don't seem worried but its hard not to be when ive how fast things can go south