[Cecile Huston]

Thanks Allan, my goal is 1,000 Vidaza so that would give me several more years, LOL although my heart Dr. did say he knew a woman who had been on it for 10 yrs so there is hope. My best to you as well for a healthy and long life.

[Cecile Huston]

An update on my MDS, I have just taken my 99th chemo, I get 7 Vidaza and 2 clinical trial drugs each 28 day cycle, I am in remission now as my 5th BMB shows good levels all around, But I have to continue treatment to stay there, if I quit, it will reverse, my Dr. seems to think the Vidaza is the main help for me. I get it thru my port since the injections when I 1st started were breaking me out in a horrible rash. I am 75 and I do most everything I have always done but takes me longer, I do tire easily and get short of breath. what I was diagnosed with is RAEB 1 WITH COMPLEX CYTOGENETICS, RIPSS 6.5 VERY HIGH RISK. I have not had any adverse reactions other then the constipation, to me the Vidaza has given me time to get a bit more time of life, I am grateful for everyday I have. For me it has worked very well.

[Cecile Huston]

I have been on vidaza since last June at 7 treatments every 28 days plus 2 clinical trials and I am doing very good, I do everything I want, cooking, laundry, gardening, estate sales and etc. I just take longer to do it and do tire easily, but I am 75 so I am not sure rather the drugs, the MDS or old age contribute to any problems I have. I am very satisfied with my treatment at the KU Clinical trial in KC Kansas. Today was my 90th treatment, I am going for 1,000, well I can hope can’t I? Good luck with your treatment as well.

[Cecile Huston]

thanks Allan, my grandpas name was Cecil so add an E and you get Cecile, which gets mispronounced so much, hence the CeCe which does not get messed up, even my nurses call me CeCe You take care and stay on top of it. I just had my 86th chemo yesterday, going for 1,000 LOL .

[Cecile Huston]

Do you mean allergic to the drug or from it being injected? I could not tolerate it being injected, did the 1st round that way and my skin was horrible, broke out and itched, so now they do it in my port and no problem.

[Cecile Huston]

Yes, it does look like we were diagnosed at the same time, April 2017, I had looked into the bone marrow transplant but at my age, 75, the risks are too much. I will continue with my 9 treatments a month, which are keeping me stable so far, mine is RIPPSS: 6.5 very high risk so what we are doing is the best for me. I hope for you that yours does not get any worse. I have had blood work every April since my breast cancer in 2000 so this is how it was first caught and then the BMB, so it is all ok. Take care of yourself as well. CeCe (Cecile)

[Cecile Huston]

Allen, thanks for the kind words, MDS is a learning process for all us with it, as there are so many different degrees. I hope you stay where you are and never need treatment, I am told if I quit treatment, I would maybe have 2 yrs, either go to AML or get an infection so the treatment is my only option and I am fine with that.

[Cecile Huston]

I have tried the pm over the counter and not any help, the 1/2 dose of steroid does seem to help, I am going to try to cut it out this Friday, my usual treatment with Vidaza is only about 1 hr and 15 min total, so not a bad deal, I only have tomorrow and Friday for this 7 days and then off for treatment until the 15th so the port and me get a break, LOL, tomorrow though is my long day as I have Vidaza and the clinical trial and that is like a 3 to 3 1/2 hr treatment, I feel blessed to have the chance for treatment and giving me more time, so hope all goes well with you. I am retired so lack of sleep is ok, when I can’t sleep I get up and play gin or something on the computer.

[Cecile Huston]

I have been on vidaza since June, 7 treatments each 28 days cycle, they have me on a steroid to keep me from being nauseated BUT that causes me to be constipated so have to take stool softners every night during treatment, and the worse is not sleeping, while on this 7 days I get 3 hrs sleep at most, last night was only 1 1/2 hrs, maybe not the same for everyone, we are now going to cut my steroid dose in 1/2 and try to get off it, but I do not want to feel nauseated, my Dr. says 50% of the people can do with out the steroid so I am going to try, good luck.

[Cecile Huston]

the only time my white cell count has been higher then normal, was right before I got a really bad sinus infection, Dr. said that was a sign of something going on like an infection, mine has always been below normal which makes me open for infections, I was on antibiotics 4 times last year and already once this year.

[Cecile Huston]

I have been on vidaza since June 2017, the 1st 7 which I get every 28 days were done as a shot in the stomach or arm, my skin broke out so badly that since that time it is given thru my port. I also am doing a clinical trial twice in the same 28 day cycle, I today had my 72nd treatment, it is keeping me alive, I also have a bone marrow biopsy every 3 months. My white cell and platelets still are almost always below normal but I am able to do most everything I did before but slower, although I just had a sinus infection followed by bronchitis which had me on antibotics again.

[Cecile Huston]

well as far as the big university hospitals go, KU in Kansas City diagnosed my MDS, (had 2 bone marrow biopsies to make sure, I am doing a clinical trial and have had 2 more biopsies since June when I started treatment, I have 7 vidaza chemo each month and then 2 of the clinical trials, I have not gotten a lot better, BUT I am no worse, some levels are better, white blood count was 2.9 yesterday so have to watch for infections, have been on antibiotics 3 times this year, I told my Dr. put me on anything that will give me life, the only cure is a bone marrow transplant, and at 75 that is not an option for me, so I take whatever they can do for me to give me the quality of life I have, I am a 4 on the scale so I need all the help I can get, what works for one person is not good for another, but I love my KU Med center, the nurses, Dr’s and everyone are professional and so good to us.

[Cecile Huston]

I personally had to have the bone marrow biopsy before they could say for certain I had MDS, even though all my blood work pointed to it.

[Cecile Huston]

Owen, I like you feel I am lucky compared to some of the other MDS patients, my MDS was caused by having breast cancer in 2000 and having radiation and chemo, but non the less just a life changing, I had 2 bone marrow biopsies before we started treatment in June, I am so thankful my oncologist found they could use my port since the injections were so painful. Here in Ks we get a winter as well, I don’t look forward to driving to KC 10 times a month for treatment in the winter but have to do it, they told me if I stop treatment I would maybe have 2 yrs. I am not ready to do that, my cardiologist told me he has a patient that has been on vidiza for 10 yrs and still alive so there is hope, I do have hope as well that the clinical trial chemo will make a difference so maybe this last BMB I just had will have better results, hang in there, one day at a time.

[Cecile Huston]

I just finished my 6th Vidaza cycle and also today had my 2nd bone marrow biopsy so do not have the results for some time form that, my statement here is that when I started vidaza and was injected in the stomach or arm, my skin could not take that, peeled and itched something terrible, I am also in a clinical trial so my Dr. checked and we are able to use my port for vidaza as well so no more injection problems, just a thought if you can do that. My counts so far are not real high or not real low, so keeping me alive and that is enough for me. I am able to do most anything I want at 75 but takes me longer as I don’t have the energy I had before. I will not even consider a bone marrow transplant at my age.

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