Dad's MDS

[Leigh]

My father was diagnosed with MDS summer 2003. Apparently he is missing his #7 chromosone, which doctors say happened while he was treated with procytox for a kidney ailment.

He went along fairly well until fall 2004 when he had to start regular transfusions (low hemaglobin, low white blood cells, low platelets). He tried procrit shots, but they didn’t help.

We’ve looked into Vidaza as a next step but Health Canada has not approved for use in Canada. Does anyone know if it is available in Canada?

[Donna]

Hi Leigh, I too am from BC. Whereabouts in BC are you? Sorry, slightly off topic here, but just wondering who your dad is seeing?. My mom saw a Dr. Wendy Lam, she was not a MDS specialist, she is a hemotologist who works out of Burnaby General. I was trying to get mom to go to a specialist but she was quite content with her. I wondered about Vidaza as well. I would be curious to know if it is. I hope your dad has found a MDS specialist I really think it makes the world of difference, they would on top of things like this.
What classification is your dad?
Good luck Leigh,
Donna

[Leigh]

Thanks for your quick reply. We live on Vancouver Island. My dad saw some specialists at St. Paul’s in Vancouver, but was told there was nothing they could do for him. He is 69. He doesn’t seem to know his classification, only the information I have shared.

[Donna]

Your welcome Leigh, I wonder why they said there is nothing they can do for him?? — Is he going to leave it at that or see someone else for a second opinion. St. Pauls has always had a very good reputation. Now, were the Dr’s he saw MDS specialists?. He also should know his classification that is very important when it comes to treating MDS, the only way they would be able to tell what it is, would be to have a BMB, has he had one?. Keep looking leigh, there’s probably a lot they can do for your dad, don’t give up. You could try emailing the red cross, they were quite helpful. There is a centre of excellence in Seattle, I don’t know if that would be an option for you, with insurance and all, but I would talk to your dad see if interested in exploring other avenues.

[eve]

dear leigh

i wouldn’t give up just because the doctors said there is nothing they can do for your dad – he is only 69 years old

find a new doctor – preferable one that has treated many mds patients –

good luck

eve

[geebeebee]

Leigh, I agree with Donna and eve — looking at eve’s Dad’s situation — he’s 82 and getting Vidaza, so your Dad’s age shouldn’t be an issue. Keep looking around for expertise and see if you can get to Hutchison in Seattle, if possible.

Best of wishes,

Greg

[Neil]

Hi Leigh,
Believe Vidaza is available in Canada, but under another name. It was 5-Azacytidine before the FDA approved it for use in the US. Another drug that is very close to it is Decitabine. They will probably recognize both.

[B. Greene]

I know they were using Decitabine at St. Margaret’s Hospital if this is any help.
Keep looking for a doctor and.or second opinion as there are options.

[Terri]

Maybe try contacting the Company that makes the Drug and See if there is away that you dad could get it. I know previously Bob got it on a compassionate basis from the National Institute here in the States prior to it getting approved.

[Author]

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