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Side effects of Vidaza injections

Posted by encb27 @encb27, May 2, 2023

My mom who is 85 was diagnosed with MDS in 2019. Started with anemia and now progressed to CMML 2. We started 5 days of vidaza last Monday and pre medicate for nausea, antibiotics for infections. On.paper her numbers are what is expected her platelets are increasing just after a week. Hgb dropped a little to be expected. I am trying to prepare myself for side effects. Other than regular MDS exhaustion, we are having some episodes of feeling faint like a heavy weight from our head to our shoulders after we stand from seated position. We sit, recoup and then are ok. Two episodes yesterday 3 today less severe. No dizziness nausea lightheadedness or headache. I know vidaza can cause extreme fatigue and faintness I am trying to assess if this is considered faintness. Never lose consciousness but thinks she will until she recovers. Thanks for any insight! This is tough to watch.

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Mentor
Lori, Volunteer Mentor | @loribmt | Sep 19, 2023
In reply to @encb27 "Update, we finished round two and mom's platelets showed an increase, hgb remained stable. Our Dr...." + (show)
@encb27

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?

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Hi @encb27. It’s been a several months so I thought it was time to check in to see how your mom is doing with her treatments for CMML? She was just finishing round 2 the last time we spoke. Is she finished with the Vidza now?

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encb27 | @encb27 | Sep 19, 2023

Hi, we stopped shots at the end of round 3(July) to see if her marrow needed a little more rest time in between cycles to start to raise levels. For the most part she held her own didn't make more RBC's or Platelets but stayed stable. Then in August we had a series of events that kept her from starting treatment again including COVID pneumonia. We started round 4 last Monday(9/11). We plan on getting on Venetoclax as well. That was a bit of a fight to get approved but the drug company came through, so for the next round of Vidaza we will be adding Venetoclax that is the plan right now. Thank you for checking in!

REPLY
miketllc3 | @miketllc3 | Sep 30 9:38am
In reply to @loribmt "Hello @encb27, My heart goes out to you and your mom as she goes through these..." + (show)
@loribmt

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?

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I am been taking Vidaza for 30 cycles ( almost three years). It took a few months for my labs to kick in and reach normal ranges. My hemoglobin (Hgb) when I first went it was 7 (had a few transfusions at that time) and now my Hgb is averaging 13.8. All the best to you...good health.

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miketllc3 | @miketllc3 | Sep 30 9:39am
In reply to @miketllc3 "I am been taking Vidaza for 30 cycles ( almost three years). It took a few..." + (show)
@miketllc3

I am been taking Vidaza for 30 cycles ( almost three years). It took a few months for my labs to kick in and reach normal ranges. My hemoglobin (Hgb) when I first went it was 7 (had a few transfusions at that time) and now my Hgb is averaging 13.8. All the best to you...good health.

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by the way, I am 75 and going strong.. miketllc3

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