azacitidine treatment questions

[happycanuck]

Hello, This is my first post on this forum so please forgive the length of this.

I have read through some of the posts concerning the treatments and transplants of others.
I am in British Columbia, Canada and would love to speak to any other MDS patient concerning treatment with Vidaza/Azacitadine. I am 53 yrs young and told that without treatment my prognosis isn’t great. I am awaiting a stem cell transplant but in the mean time I will be getting 3 cycles of Aza to bring my blasts down to 5% or less. My blasts are currently over 10%.
I have regular transfusions (Bi-weekly) for rbc’s and have come very close a few times to .10 platelets (transfusion level here) but so far have managed to avoid transfusion of platelets.
While I wait to find out if my brother is a match, I am growing impatient with waiting for contact from the Cancer Centre regarding my appointments for treatment. I was told by my hematologist that they would have to get approval to administer the drug to me (It will be via subcutaneous injection at the cancer centre). Does anyone know how long it takes to get approval here in BC? or how many weeks I will have to wait for treatment to start? It seems like all I do is hurry up and wait!!! I think that is the worst part of this whole thing. On one hand I am told that I need treatment quickly to avoid progression to AML and then I am told to wait!!
Any advice or help from a fellow BCer who might be in my position is greatly appreciated. However any advice is helpful as I will feel less alone here. Thanks. Blessings.

[Chris Ballmer]

I’m 51 and about 5% blasts. Been through 1 round of Vidaza, and going this week for my second. It shouldn’t take that long for them to prescribe it for you, but I don’t know what other things are in your blood. My California insurance was great to keep the ball rolling BUT BUT BUT you NEED to be a SQUEAKY WHEEL. Do not assume anything is in the works, or that someone didn’t lose your paperwork. I would call every day until you get what you feel is the best care for yourself. Leave nothing to chance. Nothing. Assume you are lost in the system, what would you do then and find out too late? You are your only advocate pretend. OK. Do it. Do it now. Get your doner lined up ASAP… that takes a while too, but keep calling them too.

You will totally survive a BMT… You just need to get all your ducks in a row. What are you waiting for?

[happycanuck]

Thank you Chris, for your response. I have just emailed both my BMT doctor and my Hematologist’s office here where I live. Their offices are closed today but I should hear back from them in the next few days. If I do not, I am calling them.
I agree with you that I need to be the squeaky wheel here and for the most part I am. When I forget to ask something, my husband usually does.
It was not explained how long funding approval would be for the AZA and I guess I should have asked that two weeks ago at my follow up appointment. We had just gotten back the day before from seeing the BMT specialist in a city 5 hours away and I was still dealing with everything he had said to us at that point.
All my blood counts are very low, I don’t appear to have an abnormal karotype or chromosome abnormalities, but my last bone marrow biopsy was botched and the myeloid panel was not done properly. I am getting another bone marrow biopsy done when the 3 cycles of Aza are done.
After reading your response I feel even more emboldened to continue my regular phone calls and emails to my various doctors. Thanks again.
I am not sure how I can get my donor search going any faster though. My brother and I have both been tested and we are waiting for the results. I had to redo the HLA typing test (no explanation as to why), and that was only done a week ago.
Are you also having a BMT? If you are, do you have a donor match yet?
Take Care and best wishes.

[Chris Ballmer]

Hi Canuck – I’m in the system for donor, but only after a scare that they lost my labs… actually what happened was it wasn’t input into the system as of the time i called the Transplant team… in other words I called BEFORE the lab was even entered into the computer, not sure how I beat them, but I’m glad i didn’t have to redo my labs (for the 2nd HLA typing match test). I find the more you call and follow up, the more they will remember your name. Be kind and all, but be persistent. It’s why they are there anyway, i am their job security!! lol Your BMB was botched?!! So, yeah, there’s a delay of another week or three… and with this shit we don’t have weeks to burn. I’d be pissed. This disease doesn’t spontaneously stop let’s say.. so you have to stay aggressive with your team. You’ll catch up to the lingo as you go along; I find that the Doctors do know what is going on and what works, so I go with that, they will even suggest Trials, which is all part of the state of art medicine which you need to take advantage of. We’re gonna kick this ok, stay positive and live every day in the NOW.

[happycanuck]

Hi Chris- I agree that we don’t have weeks to burn and I always, diplomatically explain that I am asking because it reduces worry about the situation. In truth I just want to keep my name at the forefront of their minds so they don’t forget about me. My doctors and their receptionists are pretty understanding in Vancouver and here where I live. I did let them know that I wasn’t very happy about the mistake on the BMB and asked that the more experienced doctor in Vancouver do the next one. I don’t know if that will happen though. I am staying positive because I have always been that sort of person. I am learning a lot about myself through this, not to mention who my real supporters and friends are. We are gonna kick this, I have no doubt. Have a great evening and keep me posted on your situation as well!
Take Care.

[Dawn O]

My mom started vidaza today and she’s vomiting is this a
Common side effect? How long did it last?

[Kathy Stermer]

I too had nausea kick in day 2 of my first week. They gave me zofran which I take as soon as I get home and it helps. Also constipation so will start senna a few days before my next treatment. All resolved within a few days of completing my cycle

[Sue]

My husband always takes Zofran and a Senna tablet before each treatment and he has never had a bout of nausea, nor has he had any significant constipation.

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