Tuesday, May 17, 2005

A medical tidbit sent to me by my SIL

Drug's Effect on Cancer Stuns Doctors


In a nutshell they are saying that they think they have a drug that can help Myelodysplastic Syndrome* (MDS) patients immensely! Why is this big news to me. It probably won't effect me actually for a few reasons. I just have a personal vendetta against this disease (and all cancer actually). MDS is the disease that Carrie was diagnosed with when she was 2.5 and she had a bone marrow transplant (BMT) for. Why I say it probably won't affect me or my family...

I'm pretty hopeful that while Carrie is considered in remission (for almost 8yrs now!) and will never be labeled cured. She is cured!! (if you go by statistics she's a walking MIRACLE!):oD

Even if this drug were available when Carrie was first diagnosed she wouldn't be a candidate for this drug.

A BMT is the best treatment for MDS. It's just not something most MDS patients can tolerate (meaning people 55yrs+...it's extremely rare in pediatric patients) so they are looking for "gentler" options besides just treating the symptoms.

She has at least TWO "perfect" bone marrow matches (Drew and Jake...Eileen, Olivia and the baby I'm carrying have never been typed to see). Having a related donor is less risky then unrelated, as is having matches that are as close as the boys.

When diagnosed the MDS was in a very aggressive and fast moving stage (staged at what is referred to...RAEB-t...Refractory Anemia with Excess Blasts in Transformation. If they'd used IPSS to classify she'd have been scored at a 3...High risk). Within a week or two she'd have been into full blown chemo resistant AML (Acute Myelogenous Leukemia). She had ALL three bloodlines (red cells, white cells and platelets) affected by the disease. Most elderly people have one line that's affected...mostly the red cells...leading to anemia.

Still it's nice for me to see this disease get a beat down!!! After reading this yesterday I realized something. The anniversary of Carrie's diagnosis (May 7th, 1997) came and passed and it totally slipped my mind! I consider that a good thing! For the most part it's getting harder to look at her now, as a "normal" 10.5yo, and remember how sick she was. Although there are days when it hits me full force and feels like we just left Boston. (like when she's really sick with normal kid stuff).

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She'll always be dealing with things related to her disease and treatments (like her cataracts, hormonal issues, skin care, etc) but for the most part she flew through transplant and has had a relatively very easy time post transplant. (things could be a LOT worse and are for a lot of kids/people).

Even though I forget at times...it's almost always there in the back of my mind. I have to admit that I'm a little nervous about how she's doing lately. It mostly has to do with her missing her October Hem/Onc clinic appt. She's suppose to get a checkup with them every 6mos...It'll be over 15mos between the next and the last (doesn't go in until July 1st). It allows a lot of...What if's into my mind. I don't think it'll EVER go away...so I'll take the times that it slips my mind as a gentle reprieve.

* Info and description of Myelodysplasic Syndrome... http://www.lrf.org.uk/en/1/infdispatmye.html

1 comment:

Jody said...

So great to hear about Carrie doing so well. What a miracle she is indeed!!!