Low counts still

[lisa3112]

Hi just wondering if anyone has low counts still post transplant? I am feeling well, just tired. But looking after a puppy and toddler can do that I think. I recently had a biopsy on the 21st of November (mainly for research regarding runx1). Not sure of results yet. But my neutrophils are 0.9 still! I thought being 260ish days post transplant they should have come up. Im only on valaciclovir. I guess I'm nervous because I got diagnosed with aml in December 2015 and that date is coming around quickly. :/ any input appreciated

[lisa3112]

Ok so not many people have been in this position.. but for those that come across this issue I am fine. Consultant said biopsy showed my marrow is still not coping 100% from transplant but I remain in complete remission. Now for my brain and anxiety to catch on to this.

[DanL]

Lisa,

I had low blood counts for quite some time. My doctor thought that it was possible that they were caused by gvhd or some other process. I know that they started to climb after a few rounds of rituxan and then finally jumped up the rest of the way last year when I was in the hospital and I received two shots of neupogen. I have had pretty close to normal counts since last October, but was transplanted in February 2014.

Not exactly the same situation. My marrow was very hypo-plastic until the middle of last year -- i was getting readings of 5 to 15% cellularity. Last November cellularity was at about 50% and is now about 60% which is normal for my age.

[lisa3112]

Thanks for experience danl. My doctor doesn't go through biopsy results with me in detail of cellularity. But if he is happy I guess I should be. He doesnt want repeat bloods until January! Sorry about your gvhd... but looks like you're powering on!

[bailie]

Lisa, my counts have remained low normal following transplant. I feel pretty good except for a bout of pancreatitis last week which got my attention. My advice for you would be to get the written analysis of all your procedures and keep them well organized. Don't just rely on the information the Dr. tells you in appointments. Watch for trends.

[sstewart09]

I completely understand your anxiety with your diagnosis date around the corner. My husband was also diagnosed in December and although he's almost 4 years post transplant, it's still a scary time. Our son was 6 months old at this time so I know it's hard to find the energy to keep up. My husband tired quickly, but our son was definitely his motivation to keep on fighting.
Not sure if your doctor checked your b12 levels with your biopsy, but that was the cause of my husband'a low counts post transplant. The deficiency did not show up in his blood work because the follic acid he was taking. As soon as he started on b12 injections, his counts made a big jump.

[lisa3112]

Hi bailie, thanks for input. I actually work at the hospital I get treatment through, so I can see all my results if I get them through hospital computers. I think I'll print a few fbes out like you suggest. Sorry about your pancreatitis! Thats really scary for you to go through. I hope the recovery is going well now.

Sstuart thanks for your reply. Thats amazing your hubby is four years post! I really sympathise with you having young kids through treatment. My boy was 8 months old when i was diagnosed (and i was pregnant but i miscarried naturally). So thankful for our baby! I'm on berocca supplements but will ask consultant about b12 when I see him.