that is? wait!!!

[frank]

after a year fighting with M D S , currently i just don’t know what i can do it next.

I am RARS patient, procrit is not warking for me, and have to have blood transfusion every 6-12 weeks(only the Red Cell). From the begining the game, all the Drs think i am a good candidate for BMT, which i have 2 brothers and a sister, but the game made a big turn after no matching in the family, then what is next?

all the Drs seems all agree that i shouldn’t do the unrelated donor BMT right now(too dangerous for my case), and i should wait for the disease turn, but somehow i cannot avoid the blood tx. it is so frustrated for waiting and waiting. what i can do with the disease? Az5 is on the schedual for my next try, but my Hemo doesn’t think it will help me, then what is next?

Clinic trial is there, all need you stay at least for a week or come back for frequently, and no close one for me. Especiall my twins will not allow me to stay outside for long, and i cannot quit the job for just myself… and what is the next…

the unrelated search have to be stoped, just because my health insur doesn’t cover for Johns Hopkins(which is 1 1/2 hours away from my house). the one insur covered will be 6 hours away, and it seems you have to arrange time to be there, and the time is the most valuable thing, you have to arrange to see Doctor, and hospital staying, and for the twins…

sorry, i just to want to vent…

without my girls, i will definitly go the BMT, even the unrelated.

Frank

[txnmomma]

Just wanting to post and offer support!!

I am so sorry things are going this way for you.

*HUGS*

[doreen]

Frank… I hate this disease and hate what it is doing to everyone. Did the dr. say why an unrelated match would not be good for you? Sounds like you are going to John Hopkins and I always hear such good things about them but I think a 2nd opinion is always good. The mayo Clinic here in Rochester could not offer me anything for the MDS but a bone marrow but were unable to find a match for me. My brother was not a match and they were unable to find a good unrelated match for me. I looked seriously into cord blood by the suggestion of the my doctor here at Mayo (they do not offer it, however) and from everything I see, it looks very very promising. I agree with you about not wanting to just wait and see, it is so hard every day to wonder and worry. I know exactly how you are feeling. I do wish you the best and keep looking until you are happy with what your decision is.

[frank]

thanks doreen.

Since i am in earlier stage of the MDS, no-body suggest a BMT right now, this is the opinion from 3 doctors…

Yeah, i may try to push for the unrelated, but i have to change to Duke university, and it is 300 miles away from me…

Frank

[Terri]

Frank, Maybe the Vidaza will work for you, where are your blast at? How are Your Counts.
This disease is terrible and so frustrating.
I hope all works out for you – You are so young I would think you would be a good candidate for the BMT

[Suzanne]

If three doctors have suggested that you wait then they must have good reason to give you that advice. Transfusions every 6 to 12 weeks is not all that often. In the meantime they are discovering new treatments all the time. There may be something coming that is less risky for you. I believe people do live with RA and RARs quite well sometimes.
It seems to me like they may be giving you the best chance to enjoy your life and your twins by not doing an unrelated transplant until really necessary. Hopkins did mention to me at one time that if I got into trouble thay might consider doing a partially matched transplant with one of my children-(that is a related doner so maybe you would be covered-or it might come under an experimental program).

[Neil]

Hi Frank,
It is not unusual for those with RARS to have TX as their only form of treatment. Patients can survive for very long periods of time on TX. At this point we really don’t know how long.
If a TX every 6-12 weeks keeps your counts at a comfortable level the docs may feel this is the most sensible option.
If your counts were trending downward and you were on weelky TX they might feel differently.
You could be buying some very valuable time by using the TX option while the researchers are developing new and better treatments.
I know how frustrating it can be, but remember there are many treatment options that can be worse than the disease.
You might want to have a very long discussion with your docs to determine exactly what they feel your best treatment options are:
1. As long as your counts are not trending
downward.
2. As long as the interval between tx does not
shorten.
3. What would their plan be if counts begin to
decrease or if the interval between TX
decreased?
My doc pretty well got through to me a few years ago when he made it clear that I would never be cured, based on current treatment options. His goal was to plan on how to extend my life as long as possible by utilizing treatment options that would not make me feel sick. In my case Procrit was the answer for the last 17 months. I went almost 7 years without any form of successful treatment. It is frustrating, but in my case it seems to be working.
If you can get in sync with your docs thinking it may help reduce your frustration level and knowing their direction can help.

[frank]

thanks Neil,

jus felt myself is so useless on this. Thanks for everyone.

Frank

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