Side effects of Vidaza injections

Hello @encb27, My heart goes out to you and your mom as she goes through these rounds of chemo. It’s rough to watch a loved one facing the side effects of these treatments and feeling helpless. The older we get the body tends to not process medications as quickly, so she may be having a harder time than someone younger. Encourage her to drink quite a bit of water daily. Room temperature water goes down easier. Aim for 64 + ounces per day to help flush the toxins.
The faintness you’re talking about could be from her drop in hemoglobin or blood pressure. How’s her blood pressure??

Going forward, your mom had 5 days of Vidaza chemo last week. This week you should see a decline in more of her blood numbers…red, white and platelets. So you’ll want to take her temperature daily because as white blood cells drop, so does her ability to fight infections. If her temperature hits 100.4 then she’ll need to call her hematologist for instructions. Usually at that point a patient is readmitted to the hospital for observation and possibly antibiotics.

Your mom will also continue to become weaker and exhausted as she reaches a neutropenic stage. That’s very normal. Because of the drop in her hemoglobin she may feel light headed and weak, so it’s a good idea to have a walker nearby when she gets up so that she feels a little steadier.
As the month progresses, her numbers should climb again having her feeling pretty well again…just in time for the next round.

How’s your mom’s appetite?

I have been getting Vidaza 5 days every 28 days for four months. ACML (Atypical Chronic Myeloid Leukemia). I also have lightheaded issues along with fatigue. Constipation has been one of my biggest issues. I’ve been averaging one transfusion every month. 1-2 units.

So far mom's appetite has been good. She has also been taking her blood pressure the past three days and it's hanging around her normal range. I have been encouraging her to drink water and she does drink water but not near the 64 ounces we are working on it though. Never been a huge water drinker so this is a little challenge lol. She has a great attitude and we love our hematologist/oncologist although it's tough to watch I am feeling better about the faintness piece seeing as others have had similar experience. Deciding to start this treatment was very nerve racking and still is quite frankly. Such a Thanks for your responses. @tampakaren, I wish you luck on your journey as well. I hadn't read about your type of leukemia I am going to look it up now. Amazing and sad really how many types of blood disorders and cancers there are.

Yes it’s really an eye opener. Didn’t realize how many varieties of blood cancers there are. Like your mom, I was never a big water drinker so I keep track every day and drink close to 100 oz of room temp and take a glass to drink at night. I tolerate the actual injections well and take the side effects as they come. The last two cycles I have had a burning sensation of my cheeks that starts about day 16. My Dr said it’s not a side effect they are familiar with.

Hi @encb27. Just checking in to see how your mom is feeling. Is she still having these periods of feeling faint?

Hi moms faintness has subsided. She did need a transfusion of 2 units rbc that was day 15. That breathlessness of low hgb came quick and left the same. Her improvement was almost immediate. She has had a good week after that. Monday begins cycle 2, have to see where platelets are. Thanks for checking in.

Mom is still trying to up her water......it's better. We start round 2 Monday hopefully it will go smooth I'll keep an eye out for the burning sensation. Keep up the good fight! Thank you for writing back.

All the best to your mom. Where is she being treated? I’m in Tampa and go to Moffitt cancer center.

We are in Upstate NY CR Wood Cancer Center Glens Falls. Mom worked at the same hospital for 30 years in payroll so she likes to get her care there. We were offered to go to Boston or NYC but we are happy here.

Update, we finished round two and mom's platelets showed an increase, hgb remained stable. Our Dr. Made the remark we are showing a little response and was very encouraged. Although I must say she has been more tired this off period and has only one day she felt good like herself. She is able to do things around her home like cook and wash dishes for herself and even went to the grocery store but tires quickly. I expect our bloodwork Monday will show lower hgb and a transfusion will be ordered. That will be day 21, on the 19th we begin again. She has gotten more accustomed to driking water and I dare say we are close to the 64 Oz a day now. Wish the cloud of exhaustion would clear I know it's a part of the disease and journey but it's hard to watch. Hopefully by round 4/6 we will really see a response and our counts will grow and stay up.
@tampakaren how have you been feeling?