my father at First got TTP and now MDS? Is it possible?

[Rainbow Star]

Hi all,
This is my first time jump into the forum and I am hoping that I can get some information from here. 4 months ago my father was feeling unwell and almost unconscious so we brought him into hospital and from that day we just know that his all blood count was low and seems not normal. The doctor was recommended us to go to saw hematologist to find out. We went to 3 hematologist and they suggest to do the bone marrow biopsy and the second hematologist said that my father got MDS and need to do some chemotherapy but since my father kidney function/ creatinine level is quite high then he said maybe you check with the kidney Doctor firat and get your kidney function back to normal then we can do the chemo, so we went to the third hematologist and he asked to redo the bone marrow biopsy once again so we done it and after many test including the blood smear and abdomen scan, the doctor said it was not MDS but is TTP (Trombotic Trombocytopenia Purpura). My father done many treatment for the TTP. Plasma exchange and the dr also put him into medication such as Rituximab, Valcade, Cyclosporine, Prednisolone. However, after few months treatment his blood count seems still not improving although dr said that his blood cell already back to normal. Then dr suggest to do another Bone Marrow Biopsy and from there is said my father has Myloproliferatif with Del 20Chromosome and MDS Cell.
And dr suggest that my father doing the chemo using Vidaza (Azacitidine) for 5 days and so he's doing his first chemo and after the 5 days Vidaza all his blood count continue to sink with HB 7,2 Platelet only 5000-6000, WBC become 0.4. Along the way he got many problems such as pneumonia, fungus infection, he got swollen from all the liquid that go inside his body including the platelet and blood transfusion. Now is almost one month post first Azacitidine and still no improvement. The blood count still low and he got blood and platelet transfusion almost every 2 days and he was on NEUPOGEN injection everyday. Recently Dr was order to give him the Nplate to boost his platelet. Is there anyone out there has the same situation? is it possible that from beginning you got TTP and then become MDS?? And did anyone have the same slow response to Vidaza?

[Neil Cuadra]

Rainbow Star,

I'm sorry to hear that your father has been ill and has had to go through so many treatments.

What I've read is that azacitidine can be very effective, but it can take six months or longer before producing a successful response. During the months before this drug helps, it can make blood counts worse. Patients have to be able to live with the side effects until the medicine has a chance to help them, and produce blood counts that rise instead of fall. Nobody knows how the treatment will turn out for a particular patient, and if the side effects are too bad the treatment may have to be stopped before it has a chance to succeed. I hope it helps your father.

[Rainbow Star]

thanks Neil for your input. Do you know if from the first cycle of Azacitidine my father's blood count still sink then can he go to another cycle?? Cause up til today he's WBC is only 0.8, platelet 8000 and HB 7,4. If he do another cycle isn't it the blood count will be sinking even more??

[bailie]

I am on my 24th cycle of Vidaza (azacitidine. My WBC and platelets hit the nadir at 10-14 days following the last day of treatment and then start climbing before the next cycle. The hope is that counts will improve before the next cycle.

[Neil Cuadra]

Originally Posted by Rainbow Star

thanks Neil for your input. Do you know if from the first cycle of Azacitidine my father's blood count still sink then can he go to another cycle?? Cause up til today he's WBC is only 0.8, platelet 8000 and HB 7,4. If he do another cycle isn't it the blood count will be sinking even more??

Rainbow Star,

Many patients see a pattern where blood counts drop after each treatment, then gradually rise. The hope is that they will drop less and rise more with additional cycles. Of course, it's dangerous if the counts get too low. So you're asking the correct question, but it's a question that your family and the hematologist have to discuss.

[Rainbow Star]

Thanks Bailie for your input as well, may I know how low is your blood count when first time you are on Azacitidine?. In 5 days my father will be on his second cycle but I haven't see any improvement on his blood count. His WBC is still below 1 and the platelet only at range between 7000-10000 and that's also because he's always on the transfusion every 2 days. I just worried that if the count doesn't come up before the second cycle start then his blood count is really in the critical range. Do you know if in this kind of situation does the dr supposed to postpone the second cycle or not?

[Rainbow Star]

Thanks Neil, yes I suppose asking and discuss further with the dr but seems the dr is always said your father count will be come up but it's almost the next cycle and still the same. I just hoping someone out there that have the same experience will share theirs and can give me some advise.

[bailie]

When I started the Vidaza my WBC was at 2.1, PLT at 34 and my neutrophils at 0.4. If my platelets dropped below 35 the doctors would lower the dose. This happened twice during the 24 cycles.