[Neel]

Thalidomide forked ok with my father, he remained transfusion independent for 10-11 months, and the results were seen after arnd 15-20 days of starting of thalidomide.

Nobody (as far i have discussed with doctors and patients) knows how and what thalidomide do. Its different result for each patient. for some it might only benefit RBC for some it might help all the cell lines.

In our conuntry only decogen is available, vidaza is not available. Therefore the only recourse/option available is dacogen. The only difference is that you had experience with vidaza, we have not any with dacogen. what effects it has can be seen only after starting dacogen therapy. It might improve the things or might might make them worse, but we still are in worse position therefore we might have to try it in sooner than later.

My father didnt had much fever episode in last 1 and half years since diagnosis. Though at the time of diagnosis he had infection and high grade fever and the ctreating doctor said that fever is part of the disease and he will have it. we thought it is life long fever, but that wasnt the case. it was fever due to infection and settled after antibiotics. this time too the doctor said the same thing, all cultures but negative, but second openion other doctor said that the fever due to disease do not generally cross 100 F therefore it must be due to some or the other infection. All cultures were negative/sterile. Therefore the doctor advise that it might be fungal and heavy dose antifungal were gicven and the fever has subsidized but low grade fever is there which goes away on its own. We think that this fever, which goes away on its own without paracetamol might be due to disease.

At present he is still hospitalised and therefore we are managing platelet transfusion every alternative day. but Platelet transfusion every alternative day is very cumber some as we have to arrange for donors and also when we bring him home they have to be regulalry monitored and needs pricking to draw blood and to inset canulla means it is really torture. My father is already very afraid of this daily pricking of niddles. My fatehrs count drops to 2000-3000 every alternate day. Moreoevr the platelet transfusion are not giving much of effects s even after 1 SDP they increase from 3000 to 18000. Ysday we gave 12 RDP and today the platelet raised from 18000 to 33000.

Neulasta as far i know is for WBC. For platelet there is revolade, which in our case didnt showed any positive results. You can try revolade and hope it works.

As far my understanding of the disease goes, the quantity and quality of life is totally dependent on WBC and platelets. Prognosis as well as quality of life is markdly better if a person is having stable and better WBC and platelets. The person whose WBC and platelets are affecetd greatly do not have good prognosis and quality of life. Though it is my personal opinion being a caregiver to my father.

Hoping and parying for you all and for my father.
God Bless
regards,

Neel