LDAC + Daurismo
May 27, 2020 at 6:18 am #51024Cliff PotenzaParticipant
After my MDS Diagnosis I had low blasts (that’s good) but I was put on a Chemo regime that used Vidaza was administered IV 5 days in a row every 28 days. Now after having 36 cycles of Vidaza my blood counts have plateaued at a low level but my body has adjusted so that I don’t feel very different, however my Blasts increased and a drug called Venetoclax ( a pill) was added to my Chemo regiment and I was put on and antibiotic, antiviral and antifungal (all pills) prophylactically to keep from getting any infections. My body continues to adjust to the counts and I feel well and am still active. A BMB’s showed blasts at 7%, then 12%, then 20% (AML Threshold). Venetoclax was added and after one cycle my blasts lowered to 11% but after cycle 2 they were back up to 20%…ugh.
So now.. after a couple of weeks with no drugs I was put on a new Chemo Routine – LDAC(low dose Cytarabine) + Daurism. The Cytarabine is taken by injection 2x a day for 10 days and the Daurismo is a pill taken every day. I was tole that the combination of those 2 drugs would be blood count depressive and I would need blood and platelet transfusions. They were right. During the first cycle I needed 12 units of pooled platelets. My platelet count went to ZERO, WBC went to .1 and my ANC to 0.0. During the mid-cycle my counts improved a little but platelets were still a problem hovering around Zero. We went to “HLA Matched” platelet infusions to overcome antibody problems. My second round just ended and had 10 units of matched platelets and 2 units of red blood transfusions for low Hemoglobin – 6.3.
So now I am in mid-cycle and will have another BMB in a week to check my blasts.
I don’t know were I go from here if my blasts are still high. Does anyone have any experience with this?May 27, 2020 at 11:49 am #51025Mer StpierreParticipant
Cliff, I have no experience with your medications or situation. It sounds like you are going through a majorly difficult time right now. I hope someone has some experience to offer you. Please keep us updated. This is a wild ride. Offering you my positive thoughts.May 28, 2020 at 7:56 am #51028justa0Participant
I’m beginning my 4th cycle next week of vidaza. I’m getting BMB next month. I’m hoping for a remission of MDS, either way I plan on BMT soon after the BMB. I can’t imagine 3 years of vidaza cycles. The doctor said I was not close enough to AML to get the venetoclax in addition to the vidaza. I pray we both have blasts less than 5% in bone marrow. BMT is only way to cure the MDS blasts problem. I work for the lord so whatever happens to me concerning this disease and BMT is okay with me. As it is written to live is Christ and to die is gain.May 31, 2020 at 12:51 pm #51071HeinzParticipant
your BMB next week will hopefully show low blasts again.
I am on Vidaza since January this year.
If you are interested have a look to my thread “MDS-RAEBII -> sAML”.
I am very much interested in your experiences and will follow your thread.
For me Vidaza plus Venetoclax is as well an option when Vidaza will stop working sooner or later.
My other hope is, that CC-486 the new oral Vidaza will receive approval very soon.
Did you discuss this option with your doctor?
All the best.May 31, 2020 at 6:10 pm #51072Amy S.Participant
Thanks for sharing all of your experiences with vidaza. I was diagnosed with MDS with high risk blasts last November and have been undergoing vidaza infusion since December. On the end of 3rd cycle, he added venetoclax orally for 4 weeks, and my blasts (in BMB) went down to 6%. But my blood counts went way down, I was told that one of the side effects of Venetoclax and Vidaza was low blood counts. He delayed the 4th cycle due to low blood counts. Eventually in the 4th cycle, I took venetoclax for 2 weeks. My blood counts went up a little. Then in the 5th cycle, he put me on venetoclax only for 7 days and the blood counts went up a little more. it appeared that the bone marrow needs time to recover and to rid of the toxicity of the venetoclax/vidaza treatment. So perhaps patience is needed during treatment. I will be seeing the doctor next week and will know more. BMT may not be option for me because there is no match in the repository and my sister is only 50% match. The doctor said that with my age and 50% match, there is great risk and I could end up being very sick for 2+ years after the BMT. He said if there is response with vidaza/venectoclax treatment, then do not undergo BMT (?). I hope everyone on this message thread will get to remission with the treatment. Thanks very much for the information on oral vidaza. Stay safe and positive !June 13, 2020 at 3:50 pm #51834Cliff PotenzaParticipant
I appreciate all of your responses. Unfortunately I spiked a fever and ended up in the Hospital for a week putting off my BMB until next week. I have been needing HLA Matched Platelets about 2-3 times a week. I’m hoping for a good result from my BMB. I’ll keep you all posted.
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