MDS/RCUD - need help in treatment option

[Mseth]

Hi Bhasky,

It's great that he responds to epo+Gcsf! Which brand of epo does he use? My mother initially had little response to high dose Eprex, then when the brand changed to erykine she had no response and then no response to Eprex also. This is a strange disease and very little goes by logic and there is hardly any logical explanation to why something did or did not work. Blood counts can be stable for some and for some just start deteriorating quickly. It's good if u keep track of his reds, whites and platelets. Since his reds and whites are affected does he have the RCMD category of mds?

I did not know there was an Apollo hospital is Cal, I thought it was still woodlands and Bellevue ruling the roost there still. I was born in Woodlands

[bhasky]

He used to get Eporise 10000 and Emgrast-M..it has worked ok for about 8 months, and I think it is wearing off now.
Woodlands and Bellevue still rule the roost, but given the demand-supply gap there are other hospitals who do as well

[Mseth]

Bhasky, I presume you are talking of weekly dose of epo 10,000, in which case it can be increased even upto 60,000 weekly if he does not respond to 10,000 weekly. I am not familiar with emgrast.
Neupogen, a Gcsf drug, is also used to increase whites and ANC.

[ccnarayanan]

Hi bhasky,

I am extremely sorry for not being able to respond to you earlier since I have been busy with so many things recently following my father's demise.

I have been consulting Dr. Anoop P (hemato-oncologist) at Apollo Hospital, Bannerghatta Road, Bangalore for my father. In my experience, he is extremely brilliant, highly experienced, transparent, and sensitive. He sees the ground reality of the situation far earlier and better than others and was extremely sensitive and transparent in guiding us through my father's case. In Apollo, there is also Dr. Anoop Amarnath, geriatrician. You can see their profiles at Apollo web site. As a hospital, Apollo provided my father with outstanding palliative and hospice care toward the end of his life. In my humble opinion, it is difficult to find a hospital with nursing staff at Platinum Suite who are solely focused on delivering their responsibilities. They did all the dirty work (cleaning him) without a single unpleasant expression in the face and empowered the family members with the opportunity to do good things (like feeding him) during his 20-day stay in the hospital.

Looking at your post, it appears that your father's MDS is beginning to progress to multilineage dysplasia (affecting multiple lines) - RCMD.

Can you please let us know your father's cytogenetics? Have you done a FISH test? This test shows chromosome abnormalities, which gives an indication of the severity of the disease. In my father's case, the cytogenetics were so poor that it dominated the progression of the disease and his end. This kind of progression, in my experience, can be so quick that we may find it difficult to take prompt action.

If you are able to bring your father and get him consulted in Bangalore, I would strongly recommend getting a medical opinion from Dr. Anoop P at Apollo.

[bhasky]

Thank you so much for responding and giving me the details of the doctor.
I will wait for a few weeks and make the decision about consulting in Bangalore based on how the doctor's in Kolkata are responding.
Tested a year ago he did not have chromosonal abnormalities, so hopefully his progression will be slower.
Thank you for responding again.