[JyotikaK]

Hi,

It is so nice to have a place where people understand what this disease is and what it does to you and your loved ones.

My Dad (60 yrs) was dx with MDS in July 2009, with a blast % of less than 5%, but his HB was the main concern. Dad is a diabetic and has had a heart surgery back in 1996 because of which his heart is weak.

One other major problem he has had for past 15 years is an hysterectal absis (fistula).

After the initial dx, he has been only on supportive care which was a RBC transfusion once in 30-45 days and platelet transfusion once in 2-3 months.

The doctors here were not very keen on starting vidaza, thelidomide, etc. given his overall health condition. But his quality of life has been constantly deteriorating, he has become half his size, has major body aches, loss of appetite, etc.

Given all this, we heard of this miracle worker, an Ayurvedic Doctor who apparently has a cure for everything. And, being desperate for a miracle we started the medicine he gave us along with the assurance that he can treat this.

Dont know whether we were being naive or just simply were overwhelmed hearing that dad can actually be better again, no one asked any questions, no logic prevailed and we started the medicine this ayurvedic doctor prescribed. This was around 2 months back.

Since then, dad's platelet requirement has become almost once in 10-15 days, he is constantly bleeding from the fistula, having nose bleeds on occasions, has had further loss of appetite, complains of headaches.

Saw some new doctor yesterday who is suggesting that the disease might have progressed as now his tlc is also dropping. She wants to get a new biopsy and then if he is still MDS wants to start him on dacogen.

At the same time the ayurvedic doctor is saying he is treating the disease and we should not start dacogen and just continue with transfusions and have his medicine.

In all this I feel I am losing my dad day by day slowly and it is just unbearable at times to see someone you love so much suffer in front of your eyes like this. It is becoming more and more difficult to look at him and give him the reassurance that he will be better again.

I have been reading posts and stories on this site for some days and it just gives me some faith that you can have a more complicated but yet a good life even with MDS. I am going to try and get dad to read some of the stuff here - it might give him some motivation.

Has anyone with MDS tried promacta for low platelets? Dad's platelets count is usually around 20000 nowadays. But with his fistula there is constant bleeding because of which his HB also goes down.

I will be praying for all of you when I pray for my Dad.

Jyotika