Vidaza quit working

[Cecile Huston]

After 18 cycles of Vidaza, it has lowered my counts so low, white blood cell 1.0, platelet 73, anc 0.22 so it is not an option, last weeks BMB showed blasts of 14, were 3 when last BMB was done 3 months ago, has been a good ride and I have done well with the treatment, also had a clinical trial that seemed to have no effect, I have been off Vidaza since Sept. 21st, so now am to see a new Dr. on the the 20th and will try another trial drug to give me a bit more time. This one my current Dr. says has been on the market for sometime so who knows, maybe will work for awhile. Good luck to all of you who are suffering with this horrible disease. I am a 76 yr old woman with very high risk MDS. I am not ready to give up either.

[Donna]

Hang in there, Cecile. I hope there is another clinical trial to help you, maybe even one for a cure. Keep thinking positive. My thoughts are with you. I have been watch/wait for quite a while. My doctor from a COE recommended I see another doc more specialized in MDS to see if I might qualify for a clinical trial. I always though you did the trial when the standard treatment failed, but apparently you can join a trial at any time. Good luck to you.
Donna

[Cecile Huston]

Donna, some trials are when the standard treatment quits working, like the one I hope to start soon, the previous trial was in addition to the Vidaza, that was since June 2017, the trial really did not do anything by itself, so have hope for a new one. Thanks for your kind words. My understanding, there is no known cure for MDS other then a bone marrow transplant, I do not qualify for it and would not take the chance with all the complications it has as well. I am grateful for everyday that I am blessed with.

[mdsfound]

Hi Cecile, Read more here https://www.mds-foundation.org/recent-news/ about the INSPIRE Trial this may be an option for you.

[Cecile Huston]

mdsfound ooops, says 82 yrs of age, leaves me out for 6 years, LOL

[anges]

Hi Cecile,

I’m sorry to read that your blood counts are that low and the blasts went up. Good to read that you are not giving up. You are a strong lady. I also try to keep the spirits up here cause my 76 years old mother just completed her first cycle of Vidazatreatment and she is kind of down so I am trying my best to stay strong for her. I wish you good luck and let us know how your visit went okay?

[Cecile Huston]

Anges, I think todays appt went well, I will have another BMB on the 28th, since it is a new trial, and then on Dec. 4th will start back on Vidaza Tues-Sat. and the clinical trial on Tues, Thurs and Sat. each 28 day cycle and with Dr. visits in addition on Tuesdays, So 8 chemo treatments in that 5 day period, I am hopeful that this combination will get my blasts down and bring up my low white cell counts, anc and platelets. I hope your Mom is coming along well, tell her to just keep on with the treatment, everyday is a blessing. hugs to you both. CeCe

[anges]

Hello Cecile, you for letting me know how it went. That is a whole lot of chemo and doctors appointments in a short period of time but if that is what you got to do to make the white cell counts and platelets go up and the blastst down it’s worth going through. I hope you will continue to let us here know how you are doing. My mom is mentally preparing for her second round of Vidaza on decembre 3th. I feel sorry for her cause she was really sick during the Vidaza week and days after but she’s been okay the last two weeks. I hope the second round will be a little les harsh for her. Her platelets went somewhat lower but not too much after the Vidaza week. I cook lots of vegetables for her and everyday I give her a combination of vitamins: b12, b6, folic acid, q10 capsules, magnesium. And she drinks tea from papaya leafs everyday. Hope to read you again, a big hug and stay the strong woman you are.

[Karen Warwick]

Hi Cecile,
My mom has MDS. Her levels are not improving since she started chemo. Shes 64 years old. She is always tired, shaky, brain fog, and unable to walk for any length of time. Blood transfusions haven’t boosted her hemoglobin either. Everyday is different but she doesn’t feel like shes living, and this is just the beginning. I wish I knew what to expect or how to help.

[Cecile Huston]

Ok, my Dr. called today and my blasts shot up to 28 so now have leukemia, so will go back on vidaza to lower them and another trial to try and get my counts up, so will see how this works out, dread new chemo as not knowing what side effects will be, but have no choice.
Karen I wish I had some good advice for you and your Mom, there is no written in stone cure or treatment as I have proved, some many different variables in this disease, my best wishes for everyone going thru this and they family as well. One day at a time.

[anges]

sorry to hear your mom doesn’t respond well to the chemo Karen. How many cycles did she go throug already? They say that it is normal that in the beginning de bloodcounts are low. My mother’s hemoglobin is also low but not too low for a transfusion yet. She should have started her second cycle today but the dr is waiting for the counts to climb back up.

Cecile I so hope that the new chemo will work for you. Crossing my fingers.

[Karen Warwick]

At this time shes only started back in August 2018. No more than 3 or 4 cycles. Today she is having serious symptoms. Now back at the ER. Questionable heart attack.

[anges]

Cecile, I was thinking about you the past days. How are you doing? How did the new trial went? I so hope it went well. Karen hope your mom is okay?

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