haplo progress - husband

[julieme]

Hi all,
New here wondering what to expect. If he comes home in 1-2 weeks. please share. Here is the history


Just heard that Craig's haplo has kicked in at day 19, third day of white blood cell doubling number is 600 or 0,6. He had aml, was transplanted at cr1 with son's marrow.
Had the ceflox<sp> prophylaxis a few days after transplant. No evidence gvhd.

[bailie]

So many memories. There will be differently feeling days. Patience is the key. Rather than expecting improvements every day, it helped me to see improvements every week or month. Don't try to do too much too fast. Be aware of any changes in feelings. We wish you the best. There is considerable information on this forum in the archives about those first few days.

[Neil Cuadra]

julienne,

I can offer my advice too.

The transplant team will provide you with detailed discharge instructions when your husband is released, so read them carefully.

Your husband will probably be fairly tired, and as bailie points out there will very likely be ups and downs from day to day.

You may need to return to the treatment center on occasion, not just for followup appointments but because you need a symptom evaluated or treated. My wife and I made many impromptu trips to the care center after her transplant, but in the end she came out of it fine. Don't panic when some extra attention is needed, and don't be shy about asking for the help.

Don't worry about your husband's appetite or nutrition at first. He'll eat what he can when he can, as his strength and health improve. He should certainly stay hydrated.

Your husband's risk of infection may still be a concern, even if his white count is near normal. Having friends and family and pets and visitors can be a psychological boost, and make life closer to normal again, but you may need to balance that with a need to keep him away from germs and to let him get enough rest.

[julieme]

Hi,
Day 23 after transplant. Just stopped growth facto injections. yesterday wbc 1.0 Neutrophils 890, platelets 4, rbc 8... today wbc 0.9, neutrophils 480, platelets 6 rbc 8.2 -- no transfusions for two days...Dr says this is good. My question why did neutophils and wbc go down? or are there normally ups and downs around this time

[sstewart09]

Fluctuations in counts are totally normal this early

[Neil Cuadra]

During my wife's transplant, they told us that the measure of success isn't seeing improvements every day, but instead it's seeing more days of improvement than days that feel like setbacks. That idea helped us see the bigger picture of overall progress, even without consistent daily progress.

But I know that you can't help watching your counts with concern every time they are measured. That's just human nature.

Good luck in seeing more counts going up.

[julieme]

Hi,
Craig has been out of the hospital almost a week after haplo bmt for aml. His counts are not keeping up. Yesterday all counts were down again so he cot transfusions. Doctor said since the did chemo after to prevent rejection rebound is a bit slower but he is making some blood cells of each type and no "bad cells" on day 29 post bmt so is ok.

Has anyone else experienced this? have not asked dr pt blank if this is graft failure or normal. He was on growth factor in hospital. Does he need som other drug?

[julieme]

Neutraphils up to 1070 and no transfusions required

Mild rash on forearms treated with steroid cream. Dr says is drug reaction no GVD -how do they know?

Also polycrohomism and some tear drop rbc. Dr says his body is pumping out rbc as fast as it can now and Craig is anemic.Is there anything to be worried about Wikipedia says thes are also signs of marrow problems

[bailie]

I had a rash on my arms and treated with steroid cream. My doctors thought mild GVHD. The rash would then come back on both knees then forearms then lower legs. The rash did not itch and was resolved fairly quickly with the cream. I went through a couple one lb. tubs of the cream. My other skin situation was itching of face and scalp. That was thought to be GVHD also. That was all I had from GVHD.