Very stange things happening with my dad

[shadowii]

He has no remnants of CLL or MDS and his bone marrow is described as "strong"

But his wbc and neutrophils keep going down to unsafe levels.

Can you get secondary graft failure five or six months after transplant an if so is it fatal?

[DanL]

If his marrow is described as strong (a term I have not heard) and there is no evidence of disease, then the conclusion that might be drawn is that there is either GVHD or too much immune suppression, or it may be that one of the medications is having an unintended consequence. Do you know which medications he is taking for GVHD?

I know that I am very sensitive to MMF and it knocks down my counts a lot, as does sirolumus, but I do alright with tacrolimus and prednisone. I am not saying that my experience with these drugs is normal, but it is possible that your father is having a poor reaction to one of his immune suppressive drugs.

Ironically, it is possible that he has GVHD and that he requires more immune suppression.

All of this is with the assumption that strong marrow means proper cellularity, proper engraftment statistics - like what percentage of cells are donor vs his own, etc.

Do you know where his counts are? There are many cases where lower than "normal" is ok and a "new normal" as long as they are above critical thresholds.

Getting medications right is as much art as science and has a lot of trial and error until it is right for the individual. We all react differently to the different medications and combinations, so adjustments to dosing, changes in regimens are frequently necessary. It may be frustrating, but it is unfortunately a necessary part of the process.

If you look at the effectiveness of different medications, there are very few that work on more than about 50% of patients without unintended side effects.

Lastly I would think that if your father were having secondary graft failure, that the marrow would not be described as strong, which is why I made the note above about cellularity and donor engraftment.

Dan

[shadowii]

problem is he's off most of the meds at this point,

and while his reds and platelets are low stable, his whites keep going down to danger levels (1.3 neutrophil 500 levels)

its so weird its only the whites though

he has some grainix now and well get the chimerism test result Wednesday

[DanL]

My counts were "strange" until about 1 year after transplant. I still have problems with slightly low WBC and my platelets only recently have been "normal" at 158 or so. They have been as low as 90 in the past 3 months. My whites have dropped to 1500 neutrophils and 3000 total count as well. This is 5 years after transplant.

Hopefully the chimerism study comes back with good results. In the meantime, work with him to keep illness away as much as possible.

The fact that he is off most drugs could signal that he is experiencing some hidden GVHD - it is one possibility to explore.

Good luck this week.

[shadowii]

welp chimerism test came back 97% me, 3% dad. much higher then last time, now the doctor is saying she is happy with his progress (does not think their is graft failure). red and whites still drop though (but platelets are strong)

They started re-vaccinating him today

very topsy turvy process

[shadowii]

its a month later and dads condition is still the same

his reds and platlets are low but relatively stable but his whites dipped to unsafe levels again.

They dont seem worried but its hard not to be (especially when I see posts from people whose numbers were normal by now)

[DanL]

Good news about the chimerism. Quick question, has he received any shots of GCSF like Neulasta? This can help with white counts and may help with other lines as well.

Dan

[shadowii]

Good news about the chimerism. Quick question, has he received any shots of GCSF like Neulasta? This can help with white counts and may help with other lines as well.

Dan

that's what they did last time and the time before that. His whites get up for to about normal and then come down within a month

[shadowii]

Welp its a month later and dads counts are improving but still in flux

rbc was 11.1 two weeks ago and now its 9.5
wbc went down but only from 5.4 to 4.5
and platelets went up from 108 to 128

he's getting his second round of immunizations today is cleared to go in an airplane (as long as he has his mask on)

Dr shore is happy it just seems to be taking a while for his new immune system to get up to regular (this is almost 9 months now)