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MDS Myelodysplastic syndromes

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  #1  
Old Thu Dec 22, 2011, 07:14 PM
caljw caljw is offline
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New here. Dad diagnosed MDS.

Hello all. First I must say that after reading many posts on this forum I am extremely happy to find you all. The information you provide and compassion you show is a godsend.
My Dad has just been diagnosed with RAEB-2. He is 85 and lives alone over 3,000 miles away from me. I have a feeling this is going to be difficult do deal with over such a great distance.
I spoke with the Oncologist for the first time today and was overwhelmed with information. I was told his Blasts count was 12 and the prognosis was bad with a probability of survival up to 1 year. I also learned that chemo (Vidaza) will not start until they determine if he is a "candidate". How is that determined?
So many questions that I want to ask and many more that I don't know I should be asking. Please help me ask the right ones. What sort of care will my dad need? How can I best help him from so far away?
The journey begins. Thank you.
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Old Thu Dec 22, 2011, 08:16 PM
annmonster annmonster is offline
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Hi Cal ....

Boy, this is really tough, isn't it .......? I'm so sorry to hear that your dad ( and you ) are going thru this ....

I haven't a clue about the Vidaza and why they wouldn't start it right away ... is he just not strong enough to tolerate chemo ??

As far as you trying to manage this from 3,000 miles away sounds super difficult .. do you have any other family, family friends, etc. that live near him ? If not, perhaps a Clinical Social Worker at a nearby hospital would have some ideas for you/ him . Could he move ? Could you move ? ... I know, sounds impractical.... just throwing some ideas out there ...

Let us know how things are going.... O.K. ?? Oh ! .... and get educated the best you can and be ready to 'go to bat' for him with insurance companies, Dr.'s etc.

Take care...... Ann
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  #3  
Old Thu Dec 22, 2011, 08:59 PM
Neil Cuadra Neil Cuadra is offline
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caljw,

You'll find a number of "what to ask the doctor" discussions in these forums.

One of the basic questions you should ask is what treatment choices are under consideration for your Dad (including giving him only supportive care), which of those he's a candidate for, and how they decide. Next you'll want to know which of the available choices they recommend and why.

Here is a list of general questions a patient might ask, from the Aplastic Anemia & MDS International Foundation (AA&MDSIF).

I suggest that you fill out this form at the AA&MDSIF website and get the information packet on its way to you as soon as possible.

I wish you and your Dad the best of luck. I hope you can arrange to visit him.
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Old Thu Dec 22, 2011, 09:00 PM
bebop bebop is offline
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I am so sorry to hear about your dad. do you know if he is at a center of excellence? is there anyway he can move in with you so you can help out? at his age he really needs someone with him I would think especially if they do the vidaza. how are his counts? it is good the dr is speaking with you about it! good to have communication with the dr.

here is a good site to get lots of info. they will send you a booklet on mds. I got so much out of it.

http://www.mds-foundation.org/patient-handbooks/

Last edited by bebop : Thu Dec 22, 2011 at 09:12 PM.
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Old Thu Dec 22, 2011, 10:51 PM
caljw caljw is offline
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Thanks so much for the quick responses. I should tell you my dad is in Canada (BC) and I live in San Diego. No other family with him, my sister lives in Mexico. My guess is the Canadian Insurance has something to do with him not receiving Vidaza right away. Will find out more on his counts after an upcoming blood test. In the meantime I will be looking into home care support from local agencies. My sister and I will of course be able to visit but I'm afraid a long term move either way is not possible. I will be contacting the MDS Foundation.
Your support is appreciated.....Cal.
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Old Fri Dec 23, 2011, 01:59 AM
Neil Cuadra Neil Cuadra is offline
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Since your Dad is in Canada, I'll add to my recommendations: Contact the Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC). They can tell you information specific to Canada, including drug availability.
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  #7  
Old Fri Dec 23, 2011, 09:55 AM
caljw caljw is offline
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Thanks Neil!
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