Dropping HB and Platelets

[pigduck]

Hi everybody,

My dad has been doing pretty well over the last few months, transfusion free but since the new year he’s been a bit green, getting a bit of bruises … and yesterday he went in for a check-up and it turns out his HB has dropped to 7.6 and his platelets down to 45. His WBC are 6.

The doc had a grave look on his face and told my parents to be prepared for the worst and that he’d need an immediate transfusion and a bone marrow biopsy which he did last night and this morning respectively.

The doc mentioned AML… chemo…

He had been eating thalidomide and I’m afraid it has just stopped working completely… he’s still eating his tuberculosis meds… which include some oral antibiotics i.e ofloxacin, etc.

The sad thing is that my dad’s been doing really well and suddenly this happens… it was at least 5 months he was TX free… maybe even 6 months…

Anyway, we don’t know the results yet but i just got a message from my mom telling me my dad’s blood count is now 8.6 even though he went for a 2 bag red blood transfusion last night… it should have brought his points up…

Has this happened to anybody before? I’m sure it has… anyway, i want to hear your stories…

My dad the last time was diagnosed with RA but was unable to do the chromosomal tests since his chromosomes didn’t culture well or something.

Thanks guys…

[Terri]

Bob is on vidaza, but recently in August or so same thing, but they placed him in the hospital as he could not keep the hgb up he was getting tx every week after being tx free since 2003 Due to the plts being low he had some bleeding in his stomach and intestines. when they scoped him they found small lesions – Part of the problem they believe was also the constant constipation irritating and then creating these. They got his plts and HGB up, They started him on daily laxatives to keep him regular I know this sounds crazy, at the time plts down in the 20’s. Everyone is different at different levels. Dr then held off the Vidaza for a little bit and he went for Radiation of the enlarged spleen as they felt the spleen was eating up the plts and causing some of this slow bleed.
Since then he has had only one tx and He is holding his own, Saw the dr yesterday again for the monthly visit (We still do weekly CBC) and dr said his blood smears still look the same no change in the disease as far as the immature cells and blast.
Not sure if any of this helps, but if you look at some of my past post you will see info on what we went through. As i said each person with this disease responds so differently, but i read everyones info and if I think it something could help with Bob I always ask our dr. I keep a journal with my questions etc.

[pigduck]

thanks terri…

well, it turns out the doctor could not come up with conclusive results because when the doc did the biopsy, they couldn’t find any cells under the microscope… there were just too few to determine anything…

we will have to wait another 5 days for results…

however, preliminary results show no leukemic cells but i think they want to be sure…

does anybody know of anybody else with an empty bone marrow? i read up on this and it seems to be characteristics of aplastic anemia… hmm…

the doc mentioned hypoplastic leukemia though…

then i found out there is such a thing as hypoplastic MDS…

[Arlene]

Hi pigduck – My husband has hypoplastic MDS. They thought it was aplastic anmeia for a while, but then they found the abnormal chromosones. He was transfusion dependent, getting transfusions of blood and platelets weekly then a doctor from City of Hope in Phx, AZ suggested he start cyclosporin orally and his blood counts returns to vitually normal. He has been transfusion independent for 9 months and the bone bx done in Nov showed no chromosone abnormalities. We just pray everyday he stays in remission. Good luck. Arlene

[J.claire]

Dear Arlene and pigduck, I am interested in the cyclosporin. What type of drug is it? I’m so glad that it worked for your husband. I have read that some studies showed a better prognosis with hypoplastic marrow, which is also encouraging. I also read something about immunosuppressive drugs being good for hypoplastic folks, so I wondered if cyclosporin is that. I am having a second bmb next friday because the second-opinion doctors didn’t think the first bmb was good because there were so few cells. I hope this one is able to get more. Thanks for all your anecdotes and information. I have learned so much here. This forum is the first thing I read every morning, even before my email. I think of you all as friends.

[Arlene]

Dear J.clair, Cyclosporin is a drug they use in kidney,heart transplants, aplastic anemia – also in bone marrow transplants. It is a immune supressent – so a person has to be careful with the germs. They are a few studies w/ this drug and MDS. I found them on AAMDS.org. They work sometimes and sometimes they don’t. Moe has been lucky – AAMDS info states the average they work is 10 months, so the next few months are kind of scarey. Sometimes they give it with a drup called ATG. So far, just the cyclosporin has worked for Moe. There are lots of side effects, but Moe has had very few and all ones he can live with. Arlene

[pigduck]

Dear J.Clair, I hope they find more cells too – seems like you are in the same boat as my dad… in fact, looking at the age and that you are RA also, … it looks you and my dad are similar..

Yes, my dad’s doc actually wanted to start my dad on cyclosporin rather than thalidomide initially but because my dad was on TB drugs, he couldn’t take cyclosporin…

I forgot to mention they took my dad off his TB drugs yesterday too …

Hopefully, my dad’s condition will improve… the thing is we don’t even know if there are chromosome abnormalities… the next 5 days will have us holding our breath…

[Author]

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