May 1, 2019 at 10:15 am #46604
I will be starting Dacogen soon and would like to hear about others experience with this treatment. I am curious if I will be able to work and function close to my normal.May 13, 2019 at 9:00 pm #46737Terri ErdmanParticipant
My husband is 58 and diagnosed with high grade MDS with extra blast and TP53 mutations on January 10. He was very active and in great shaped. He had 2 courses of decitabine. He continued to exercise and function normally during treatment. We even took our RV from WI to Louisiana between treatments!! He tolerated this drug quite well. No side effect, kept his hair and blasts dropped from 9% to less than 1%.
He received HSCT from our son on April 24th. He has had significant GI effects from conditioning, transplant and anti GVHD drugs. However, those seem to have calmed down. He is at Day +19 and hoping to go home within the next couple of days.July 4, 2019 at 8:50 am #46994Carole TiricoParticipant
Have you started the Dacogen yet and if so how is it going for you? I am starting on Dacogen Monday and would love to hear from you.
CaroleJuly 6, 2019 at 12:22 pm #47011
I will start my 3rd cycle this Monday, so I’m a little ahead of you and doing okay. My numbers were pretty low when I started. WBC around 1.2, platelets around 30,000, others I forget but all low. My first infusion, I had Compazine in the IV to cover any nausea. I just felt very fatigued and generally spent. I went home and took a nap right away. I never did have nausea, so the next day I decided to try it without the Compazine because I know that can make you sleepy and I was much better. So, I have Compazine pills at home if I need them along with Imodium and Colase in case of any need. However, I have not used them. My ANC has gone down to .1 and I am not allowed to be around crowds or sick people. WBC just went up to 1. Platelets had fallen to 11,000 and I had a platelet transfusion and now they are up to 21,000. I have no complaints from the treatment. I am on daily antibiotics until my WBC and ANC go up. I’m hoping by 6th cycle I see that the chemo is working. I am glad I started when I did. Why wait till counts are lower and I’m sure your doctor wouldn’t recommend it if he didn’t think it was best for you. I wish you the best. How old are you, if you don’t mind me asking. Are you a candidate for stem cell transplant in the future?
DonnaJuly 6, 2019 at 2:51 pm #47013Dale FrankParticipant
Donna, thanks for the info. Is Dacogen similar to Vidaza? I’m about to do 4th cycle of Vidaza. Still getting monthly transfusions for low hemoglobin. My WBC is only 1.0. Diagnosis of RABII with 8% blasts about 4 mos ago. Best wishes to you and all on forum.July 8, 2019 at 11:23 am #47023Carole TiricoParticipant
I am 75 years old and will be starting Dacogen today – I am a little anxious – I have never taken many pills and don’t like all this medication the Dr. is giving me. I have only taken a vitamin and a blood pressure pill only for many years and now all of this.July 24, 2019 at 9:01 am #47443
Dacogen is the only other chemo used for MDS as far as I know. I don’t know why the MDs order one over the other. Maybe mutations have something to do with it. I don’t know. I have had 3 cycles so far (5 days in a row by IV infusion, then 3 weeks off) and have tolerated the treatment good. No nausea, diarrhea, etc. I have had extreme fatigue. I felt worse after this last cycle. I get weekly CBC and my counts were extremely low…WBC .8; RBC 2.57; ANC .1; platelets 8,000, so I went for my 2nd transfusion of platelets and 1st red blood cell transfusion yesterday. I feel a little better today, but not much. I guess transfusions only raise these numbers a little. I’ll be anxious to see my blood work next week. Have you needed any transfusions?
DonnaJuly 24, 2019 at 10:28 am #47444Sherry PrattParticipant
The drug made my blood lines , all 3 go very low. Had neutropenia for about 35 days. I took 2 cycles if it. Then went into transplant…..but remember everyone is different.
Pratt8075@aol.comJuly 24, 2019 at 10:58 am #47445
Sherry…..I have been neutropenic since before I started Dacogen. That was my first abnormal when I was referred to hematologist in 2012. I am not a candidate for transplant so I am hoping the chemo works for me. I wish you well.
DonnaJuly 24, 2019 at 4:41 pm #47446Dale FrankParticipant
Hi Donna. To answer your question, I’ve been getting transfused with two units of red blood monthly for about 7 mos. I started Vidaza 4-5 months ago but I’ve needed transfusion before each round of Vidaza because my Hemoglobin slips to below 7.5.
You’ve been getting your Dacogen IV? After 3 rounds of getting sub-cutaneous belly injections, I had a port installed because my doctor and nurses said IV injections would be too hard on my veins.
Best wishes to you and all on the forum.July 31, 2019 at 9:16 pm #47466
Dale…. Yes I get the Dacogen IV 5days in a row every 4 weeks. I do not have a port. Sometimes we leave the needle in my arm for 2 or 3 days. I also get CBC every Monday.
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