Started Vidaza – stable after first cycle

[Kirby]

Hi All,
I started Vidaza on Nov 12 at a reduced dosage due to low platelets and a low bone marrow cellularity of 10-15%.

My platelets were in the low 20’s for several weeks until we started low dose Neumega injections. These were given at 10micrograms/kg (1/5 the normal dosage), after 10 days the platelets were in the 40’s.
Reference for Nuemega for MDS patients: http://jco.ascopubs.org/cgi/content/abstract/19/21/4165

After a BMB which identified low cellularity at 10-15% and 8% blasts my doctor decided to start Vidaza at a low dose of 50 gm/m2 for 3 days.

Following the Vidaza week of injections I received Procrit, Neupogen and
Neumega to hold he CBC counts. On day 16 following the injections the counts still remain stable with platelets holding in the 40’s.

The second cycle is planned with a 5 day cycle, starting Dec 8.

My MDS journey with the 3rd drug seems to be starting ok.

[paml]

Kirby,
So nice to see that you are doing well and that the latest of suggested treatments is working for you. Thanks for sharing your information.
After 20+ years of a lower level disease and only short periods of time when I required growth factors, I have moved on to RAEB2, 12% blasts, with no cytogenetic abnormalities. Currently all 3 cell lines are affected. I have a consult with my oncologist on 12/9 to discuss next steps and which research facility to align my treatment. I am considering Ohio State and Cleveland Clinic.
Any suggestions form you would be much appreciated with regard to your treatments, experiences, and facilities which you’ve associated. I reside just north of Dayton, Ohio.

Thanks,
Pam L.

[Zoe]

Pam,

I am still at a low risk level, though I am on Aranesp. I am at OSU and see Rebecca Klisovic. I really like them, and from what I hear,they have a great reputation. They have been great about taking time to answer all my questions and to address my concerns. Cleveland Clinic also has a wonderful reputation, but I don’t know anything about them directly.

Zoe

[jaxem]

Kirby & Pam
are you both considering a transplant?

[paml]

Zoe,
Thanks for the recommendation of Ohio State. We’re waiting until after my 12/9 consult in Dayton with my doc of 18 years (I tease him about being together longer than most bad marriages). OSU is closer and we have another doctor contact that is recommending them. I’ll let you know the decision once we’ve arrived at one.
Thanks,
Pam L.

[paml]

Hi Jack,
I’m still reeling from the change in dx; seems kind of silly I suppose. I guess I just thought naively, or wishful thinking if you will, that after 20 years “it was what it was,” surprise.
I have three siblings and absolutely would consider a transplant after their HLA testing and maybe a go at some other treatments. I’m anxious to hear what the research docs will have to say. Timing is everything…
How are you doing after your loss?
Pam L.

[jaxem]

Pam
“research” docs? Why do you say research docs? Seems like you should be getting into remission asap, then getting rid of your defective blood system via transplant. you’re way too young to be fooling around with RAEB-2. I’d also be pushing your sibs to get their blood tested asap.

I miss her. There’s not a day that goes by that I don’t think of her. I’m alone in my house but I’m not lonely as I’ve got a lot of friends and my son & his family around me. I’m fortunate in that way.

[Kirby]

Hi Paml, Zoe and Jaxem,

Hi Paml,
Cleveland Clinic is one of the centers of excellence and they have lots of experience with MDS, they would be a good place to consult. My Dr. in Cincinnati is very experienced with MDS if you wanted another opinion.
I was at 16% blasts in early 2004, only Thalidomide was available, after 3 months my blasts were normal. Revlimid worked a shorter time and now I’m depending on Vidaza. Both Revlimid and Vidaza would seem to be options in your case, Revlimid is easy to try, a pill each night. Vidaza is often used when the blasts are high as in your case. It often seems to depend on each doctor’s experience as to the drug they try. Dr. Sekeres at the Cleveland Clinic is experienced with each drug. This link to an AA/MDS site may work and will let you hear a presentation by Dr. Sekeres: http://live.blueskybroadcast.com/bsb/client/CL_DEFAULT.asp?Client=680927&PCAT=1016&CAT=1020
(I hope it works).

Hi Jaxem, I’ve thought of a transplant but as long as the medications work I’m pretty satisfied. The “Hutch” in Seattle, WA is the premier MDS transplant facility and is a top choice. Even their data shows that 50% of MDS transplants suffer death within 12 months, so the odds are not too good. Some are successful however and it is an option for many.
I’m sorry for the loss of your wife. I worry about leaving my wife and family but so far I’m holding in there.

My counts are holding stable, I did not suffer any large drops during days 10-17 after the Vidaza was given (this is often the minimum count period during Vidaza treatments).

I’m looking forward to the a full 5 day cycle starting 12/8/08 at or near the normal dosage.

[paml]

Jack,
I was off line for several days…
I think the term I used, “research docs” is probably a misnomer. What I mean are those physicians, who treat at “treatment centers”, and those associated with treatment studies etc; we find them in Centers of Excellence or med schools. I agree, no fooling around, I’m aware that my life depends on getting the blasts under control. I hope to be associated with a treatment center and in the hands of a doc that I trust prior to the New Year. I expect that my siblings will be HLA tested and that we’ll take the suggestion of transplant under advisement… Kirby spoke my concerns specific to that choice of treatment.

Jack, you are very blessed to have friends and family for support and company; my heart aches for your loss. I have to graduate my son from high school and my daughter from college in 2010; a few jobs left undone and missions to fight to complete. Thank you for your comments.
Pam L.

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