Update on me
February 5, 2005 at 7:05 pm #3945
I met with my Dr. Friday. Everything is clear on my last BMB.I finish a year of Zarnestra in Mid March. So far there is no sign of the leukemia or MDS coming back. They now say I might have a 50% chance of “beating this thing”. They have people who have relapsed when taken off Zarnestra and I think some others that are out about 5 years with no relapse.
Because we were all in remission to start with, they do not know whether there were any remaining cells in hiding for the Zarnestra to “kill” during that 1st high risk year or not So hard to tell whether the initial period off is higher risk or not on an individual basis.We are a very small group that have tried Zarnestra as a “mintenance” drug. So there really are no reliable statistics .
They will be doing counts every 2 weeks and seeing me every 4 for a while when they take me off to be sure things stay ok. A BMB 10 days after the end and probably another one in about 3 months if all goes well with my counts-so I am getting ready for the next step. I will be glad when I am through that first 3 months of no medication.February 5, 2005 at 8:00 pm #3946
Suzanne, I am so happy to hear you are doing so well. I hope all continues you are an inspiration. you have provided so much helpful information, Thank you,February 5, 2005 at 8:21 pm #3947
What wonderful news. Will be pullig for you to make it last!
Have been watching your posts with awe.February 5, 2005 at 8:54 pm #3948
Hi Suzanne, Sooo happy to read the good news about you. As Terri said you are an inspiration to all of us , your positive attitude and knowledge helps all of us. Thank you and best wishes for the remaining treatment. KateFebruary 5, 2005 at 10:21 pm #3949
Suzanne, what wonderful news. You have really been blessed. Continued good health.
SarahFebruary 6, 2005 at 12:22 am #3950
I’m so glad that you are doing so well. Wishing you continued good health. PatFebruary 6, 2005 at 7:02 am #3951
Hi Suzzanne, Was happy to hear that the zarnestra has worked so well in your treatment. I hope this is our miracle drug of the future. I pray that you will remain in remission. Ellie & GlenFebruary 6, 2005 at 10:15 pm #3952
Wonderful news Suzanne. Hopefully this will keep you MDS free and you can go on and live your life. Of course with the cbcs it is worth giving a little blood in order to get good reports.
NaomiFebruary 6, 2005 at 10:58 pm #3953
I’m so glad that you are doing so well! Zarnestra has certainly worked for you…hope you have continued success and great health!
Take care,JodyFebruary 6, 2005 at 11:03 pm #3954
Brilliant Suzanne – long may the health continue!February 7, 2005 at 3:38 am #3955
wishing you continued good health
eveFebruary 7, 2005 at 12:12 pm #3956
Suzanne, great to hear the news…hope it keeps pouring in.
GregFebruary 7, 2005 at 1:23 pm #3957
Thanks to all for the good wishes
I am not through this thing yet. As my Dr says it is a series of “hoops” we go through and things look better each successive one I get through. It actually never occured to me that there might be even a chance of getting through without a transplant.
By the way One logical thing he said that I had not thought of. BMB’s are a sort of random sample and the more I have that show clear the more likely I really am. The cells can be there “Hiding”- Ie in really low #’s. He said that is why they have given me a spread of BMB’s (& it looks like they will continue to for a while)So I will stop complaining about that although I have given up “cold turkey” and gone to ativan and oxycodone 5 20 min. before. It takes enough of the ‘edge’ off that it isn’t so bad.February 8, 2005 at 3:50 am #3958
So good to read good news!! May you have continued success and kick this disease in the butt!
~LisaFebruary 20, 2005 at 4:59 am #3959
I really hope you beat this thing… I am all for you!!
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