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Treatment in the NY tri-state area

This topic has 6 replies, 1 voice, and was last updated 18 years, 3 months ago by eve.

Viewing 7 posts - 1 through 7 (of 7 total)

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January 19, 2006 at 2:56 am #11410

lucym
Member

I would be interested in hearing from anyone who has had treatment for hypoplastic MDS in the NY tri-state area. My Mom who is 62 years old was diagnosed in March 05 on a routine physical, less that 1 year later she is in the hospital with extremly low counts and hypocellular marrow.
Any doctor/hospital/treatment information success or failure would be great help.
Thanks
Lucy

January 19, 2006 at 1:15 pm #11411

eve
Member

lucy

my dad is being treated by dr silverman @ mt sinai in nyc – he has been on vidaza for over 2 years – feel free to contact me with any specific questions you have

eve

January 19, 2006 at 4:06 pm #11412

Dennis
Member

How often does you dad get the vidaza? What kind of results is he getting?

Thanks.

Dennis

January 19, 2006 at 7:53 pm #11413

eve
Member

hi dennis

my dad gets the vidaza anywhere from 4-6 weeks intervals – depending on how he is feeling

last month he had a fungus infection so they postponed the treatment an extra 2 weeks

i would say the treatments are definitely helping his blood counts – especially the hgb – which is in the 10-11 range -platlets are still low in the 30-50 range – the problems we have been having in the last several months are with a bleeding ulcer that doesn’t seem to want to heal and last month dad had that fungus infection –

it’s a tough road, but we take one day at a time

good luck to you

eve

January 19, 2006 at 9:43 pm #11414

gemloyear
Member

Hi Eve, does your dad take carafate or asacol for his ulcer? Those meds. helped my husband.Its encouraging that your dad is hanging in there with the vidaza. My husband’s category was changed from RCMD to RAEB-1 in dec. and in jan. to AML, but his Dr is not recomending any chemo. she does’t feel it would do any good. We are going for a 2nd. opinion.I know I should post a separate up date but I don’t know where to begin.
This has evolved too fast.
Ellie

January 20, 2006 at 1:02 am #11415

Suzanne
Member

Ellie, glad you are going for a second opinion. NIH diagnosed my progression to AML and they said they did not think anything would work and had no treatment to recommend. I sure am glad my Docs at Hopkins disagreed! I know You just want to be sure you have whatever choices there might be so you can make a decision. Good luck. Will be thinking about you

January 20, 2006 at 5:14 am #11416

eve
Member

hi ellie

my dad is taking protonix for his ulcer – will check into the drugs you mentioned

glad you are going for a second opinion – never give up hope

eve
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