[Cecile Huston]

Today will be my 7th Vidaza so 2nd cycle, I had 4 units of blood and 1 platelets in last 4 weeks, now have to have blood work twice a week, I fully expect a transfusion tomorrow, I tire so easily, any steps make me breathing hard, but rest in the recliner gives me back my energy, I just shoveled our front 26 steps of snow. Dr. says they have had good results with a cure using the VENCLEXA tablets along with Vidaza, he started 3 patients on it, he had just gotten back from a symposium in I think Canada and he said that was all they were talking about. It is 2 tablets a day, I did have to start a diuretic and potassium tables as well, my counts are low but will keep this up. I am 76 so not a young person, also I had no health issues before the cancer, was on my meds. My prayers for your Mom. You might ask her Dr. about the Venclexa and his opinion. generic is venetoclax, it is FDA approved.

[Cecile Huston]

I was on Vidaza and a clinical trial for 18 cycles, never any extreme tiredness, but in Nov 2018 I went to Leukemia with 24 blasts, I just started back with Vidaza and a new FDA approved pill, VENCLEXTA, very expensive, we had to get a grant to pay for it, only had 7 Vidaza so far, 1st of Dec. the pill is 2 each day for 30 days, they have had remissions from Leukemia I am told, the side effects are hard to take, my counts are sooo low, I had a blood transfusion (my 1st ever), on Dec. 21st and blood and platelets both on Dec 26th, Dr. tells me once we can get the leukemia in Remission, then will go off the drugs and the counts should come up, so give time for your Mom’s treatments to work, it is a hard cancer to cure, but there is hope.

[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.

[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

[Cecile Huston]

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

[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.

[Cecile Huston]

It is done thru the clinical trial at KU Med Clinical trial in Fairway Ks, they are no longer taking any new patients on it, it has been closed, so far I am still on it, but they did put me on a daily antibiotic as a precaution. So you can not get on it at this time.

[Cecile Huston]

I am on my 15th round of Vidaza and always have Zofran before hand, they use my port, no infusion as I had major hurt/rash from that, no side effects, also doing a chemical trial twice a month, Vidaza working fine for me so far, will have my 7th BMB on the 15th of Aug, last one showed I am in remission and mine is chemo induced MDS high risk, this works for me well.

[Cecile Huston]

Terese, I am in remission now for almost 3 months, I will have a BMB next month so will see how I am doing, I had such painful areas in the injection site that they have used my port every since and no problems at all, I also do a clinical trial twice a month. Thursday I do Vidaza and Friday and everyday next week, believe me I do everything I did before, only much slower, my energy level is not great so I just have to rest when I can, steps are hard for me, BUT I am usually at 6-8 estate sales every Sat. and also have a garden, (don’t do much in it with the heat) but I will enjoy everyday that I have left. Best of luck to you in how ever you go with treatment. I am going to KU Clinical Trial building in Shawnee Ks, a part of KU Hospital. They are great.

[Cecile Huston]

also Terese, I was told that I could stay on Vidaza as long as it works for me, one patient had been on it for 7 years, BUT if the treatment quits working then I will have about 2 yrs to live with getting an infection or going to AML, so this is my choice and it works for me. Side effects are minimal./ I have already completed 14 cycles.

[Cecile Huston]

Terese, my MDS is also chemo related, I have been on Vidaza since June 2017 and now in remission but I will continue with it since it is working for me. I chose not to do the BMT as with my age of 75, the risk is too great, I hope to have many more years ahead for me, I did look into the option of BMT and decided not to proceed, a lot depends on your age and health.

[Cecile Huston]

thanks all of you for your input, this MDS varies so much from one person to another, we just have to find what works for us, I have another BMB next month, will be my 7th so will see if I am still in remission, pray that is so. Thursday I finish my 14th cycle of Vidaza so onward we go. Good luck with whatever way you go on your treatment, they say as long as the Vidaza continues to work for me, I will stay on it. My husband is in poor health but so good with going to the treatments etc with me, and with much discussion with the Dr’s and nurses and family this is the route I will take.

[Cecile Huston]

Hi Tereze, I am 75, and they do not recommend a BMT for me at my age, the treatment is very hard and risky for those older. The Vidaza seems to be working great for me so I will take it as long as it does. I feel at 75 I don’t want to be in the hospital for weeks on end after BMT and I have discussed it with those who worked at the hospital where it is done and I just feel I can’t tolerate all one has to go through to have it done. For some an option but not me, I do everything I want to right now, garden, housework, estate sales and sell on ebay, I do tire easily and have to stop to get my breath, BUT that is ok with me, not sure what is old age, MDS or the chemo. One day at a time. Life is good.

[Cecile Huston]

My heart Dr. said he knew a patient that had been on Vidaza for 10 yrs, I am on no other meds, just the chemo so will continue as long as it works, I am RAEB 1 WITH COMPLEX CYTOGENETIC, RIPS: 6.5 very high risk,SO I will take one day at a time as I do, if I quit treatment or it quits working, they told me I would either go into AML or get an infection. thanks everyone for you info.

[Cecile Huston]

I have been in a clinical trial since June 2017 when I started treatment, I have 2 of the clinical trial drugs and 7 Vidaza each 28 day cycle, I am in remission right now, I do have another bone marrow biopsy (my 6th) today so that will tell if I am still in remission, I did the trial so that perhaps it would help me as well as those after me. I am RIPSS 6.5 VERY HIGH RISK. I figured I had nothing to lose, I am now on an antibiotic daily as 6 people died out of 21 on the trials, although none from the drugs, and all in the 1st 3 months, they died from heart attacks, infections etc. I feel it was the right decision for me. I do have to stay on treatment to stay alive as we all know, treatment is not a cure. Only a bone marrow transplant is and that is too risky for me at 75. Life is good. People tell me I don’t look sick, and I tell them I am not sick, I have cancer. I do everything I did before, garden, estate sales, cook. etc, but just slower. For me this works.

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