New Vidaza Patient

[robert rogus]

I have recently started Vidaza treatment for MDS. My issue is a low platelet count (30). After 3 cycles, I’ve had no improvement. My doctor tells me this is not unusual. Can you discuss your experiences?

[sherry luhn]

I am finishing my fourth round of vidaza. Mt platelets are normal…. Hang in there. My chemo nurse said wait until the 3rd round until you see a change in your body and counts…The first 2 rounds were so hard physically. I could not work much( standing in a pharmacy). I am so much better- just get tired after being busy…. Hang in there!

[yq]

My dad will be starting his first round on Monday. Thanks for sharing your experiences so far.

[Dion Botha]

Hi all

Just starting my first round on Thursday past, The first two days have been hard as I get nausea and vomiting a lot.

[robert rogus]

Dion:

I finished my 4th cycle last week and my platelet count is still low at 32. I get anti nausea medicine before Vidaza and it works pretty well. My doctor also gave me a prescription for Prochlorperazine, 10 mg which I keep at home and use if I need it. Look into these and see if it can help.

[Dion Botha]

Thanks will do

[Richard Wagner]

I am almost finished with my 6th cycle of Vidaza injections. Only real bother is the sore arms and belly at injection sites. A little nausea at times, other then that I have been lucky I am guessing. I will get my third bone marrow biopsy done in a few weeks to see if this is working. I was 16-18% blasts in September. What to do if I have gotten worse? I was given 1-2 years six months ago. Oncologist says he hope to give me a year or so more with the Vidaza. WBC-2.2, GRA-1.0, RBC-3.16, PLT-156 on last CBC. Best wishes to all..

[LeAnn Duke]

I will most likely be starting Vidaza in a few weeks. I am wondering if Doctors will give an anti-nausea med so that I can take it at home. Is this nausea the kind that is hard to get on top of if you only take the meds when you first feel the nausea or is it mild and can be knocked out taking the med only when you feel it coming on? Does anyone have any experience with taking Vidaza long term? My Drs have said that they have patients who have responded well to this med and have been taking it for 2 years and one who had been on it for 4 years.

I have to admit that I am concerned about starting this med! Scared is more like it!

[Sherry Luhn]

I know you are scared. I was. My chemo nurse was a angel and explained everything. They give you anti nausea before the Chemo and it makes you fine. I have had NO problems. Stay positive!!!! You will do great.

[carl engel]

Am I to start now?

[carl engel]

Learning this page! I have just joined the club (April 2016). finished 2nd cycle and haven’t expired yet. I never know what to expect from Med. I just want to sail my boat again. CE Baltimore.

[Sam Brown]

I would just say, “Been there and done that.” I have had Vidaza injections (130 mg), but was always given nausea med about 15 minutes before. I have found that all nurses are not equal. That is to say that initially I had post-injection bruises. Then I found one nurse among the six or so who had previously given the injection without any after-effects. So, my advice would be, try another nurse. When I asked the competent nurse what was the difference in how she did her injections without bruising, she replied that she didn’t know what made the difference. So, move on! All nurses are mot equal!

[Sam Brown]

I would just say, “Been there and done that.” I have had Vidaza injections (130 mg), but was always given nausea med about 15 minutes before. I have found that all nurses are not equal. That is to say that initially I had post-injection bruises. Then I found one nurse among the six or so who had previously given the injection without any after-effects. So, my advice would be, try another nurse. When I asked the competent nurse what was the difference in how she did her injections without bruising, she replied that she didn’t know what made the difference. So, move on! All nurses are not equal!

[carl engel]

All nurses aren’t equal but mine is the best!

[carl engel]

I married her 40 years ago.

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