Follow cbc with Vidaza

[kyis]

I'm on day 14 of my 1st Vidaza treatment and had 1st blood transfusion a few days prior (2 units, which got me to a 10)
I had a semi unrelated skin biopsy performed last week for a MDS germline study. I think it might be getting infected, so hope to get it looked at today.
I also noticed last week fatigue is back, I assume because my hgb has dropped again.

My question (finally) is there a protocol or guideline for follow up cbc during Vidaza treatments, especially with my counts so low?

1 more question please.
If I do get an early cbc and it says my hgb is low should I stick it out another 10days or so and get transfusion just before my next treatment or get it asap?
THANKS!

[PaulS]

Hi - I hope you're Vidaza goes well -

I did a round of Vidaza (didn't work for me) and I would wait as long as I could to get transfusions - as a result I'd let my Hgb get pretty low - below 7 - I would be very tired - and as I found out later - the low Hgb made my heart work harder which helped cause some heart problems down the road. I eventually let my Hgb get down to 5 - and ended up in the ER - at that point they put me on weekly blood tests and transfusions. Frequent transfusions also created its own problems - the lesson I learned was to not let the Hgb get too low - I think its better to get your blood checked more frequently and to transfuse as needed - rather than try to tough it out and wait until it gets too low and you need multiple units anyway. Staying more or less steady felt better than the fairly big swings I'd been experiencing. How frequently is probably something you should discuss with your hematologist - and might depend on your counts and response to Vidaza - Hopefully the Vidaza will work and your counts will start to go up soon without transfusions.

Best wishes,
Paul

[bailie]

Very good questions. You say Day 14, is that 14 since the Vidaza finished? My HGB stayed fairly constant during my treatments. My platelets were what moved the most and were very predictable from cycle to cycle. They dropped to 40-60 about 10 days following treatment before bouncing back to around 200 before the next cycle. My first cycle my HGB was at a low of 9.4 and I still did the seven days of Vidaza. After that cycle my HGB has been above 10 and now above 13.

I had CBCs every seven days for my first 5 cycles. Then when my counts became predictable it was every two weeks for a CBC.

The answer to your last question(from my discussions) is to continue with the regular cycle and get the transfusion if needed. The doctors with me have once changed to a lower dosage the time my CBC showed low counts, but did not change the length of the cycle.

What are your CBC numbers for HGB, RBC, WBC, platelets and neutrophils? Those numbers really guide the use of Vidaza.

[DanL]

Kyis,

My experience with Vidaza is that i hit my low point in terms of energy and blood counts at about days 13-17 or so. During the first couple of cycles, we would do a CBC prior to the cycle beginning, at the end of the first week, then weekly thereafter. Palliative care (transfusions etc, ) was performed as needed. I would not suggest waiting extra days to get transfusions done if needed as that in the end lowers your quality of life, and exposes you to getting overly tired and more prone to infection, so no, waiting another few days or 10 days should not be part of the protocol. Generally, your doctor has a number in mind, mine happened to be transfuse at anywhere below 7 because I functioned well down to that range. During treatment, most people seem to go with an 8 or 9 target, i have seen some as high as 10. Check with your doctor at your next appointment what their trigger number is. Some clinics use HCT instead of HGB as well, so you might hear a number like 25 as the transfusion trigger for RBC. Platelets are usually only transfused if you are symptomatic or below 10 for most that I have seen. I have also seen neupogen injections given along with Vidaza, but this seems to be a little rarer. Feel well and be strong!

[kyis]

Thanks All,
Never ceases to amaze me how different everyone is!
Day 14 is with day 1 being 1st treatment. I only had a 5 day regiment. Besides being fatigued, heart pounding, blood rushing in my little brain, my hip flexer muscles start hurting when my hbg gets low? Anyone ever notice the hip flexer deal? If I don't do anything I feel fine.

I was able to get cbc yesterday. My counts were pretty much back to where they were prior to vidaza, which I think is pretty good, especially my platelets and wbc stable, though anc was pretty low at 8% neutrophils. Probably getting a few units of super leaded this Friday, everything else under the hood should be good.

Below are some cbc's for us blood count fanatics. Sorry for the formatting.

HCT, Hgb, MCV, Platlets, Rb, rdw, wbc
11/9/15 MAN DIFF 26.7 8.9 120 54 2.22 14.5 0.5
12/16/15 MAN DIFF 28.3 9.6 119 61 2.37 14.5 0.8
1/19/16 MAN DIFF 26.5 8.9 119 40 2.23 14.7 0.4
2/9/16 MAN DIFF 25.9 8.9 118 55 2.20 14.7 0.8
2/22/16 MAN DIFF 22.7 7.7 119 52 1.91 15.1 0.5
2/26/16 MAN DIFF 21.1 7.1 121 46 1.75 15.2 0.7
3/4/16 MAN DIFF 21.3 7.1 121 48 1.76 15.0 0.8
3/9/16 MAN DIFF 20.5 6.9 120 56 1.71 15.0 0.5
3/13/16 MAN DIFF 29.3 10.1 107 45 2.74 25.0 0.6 After 2 unit transfusion (day before 1 shot)
3/28/16 MAN DIFF 22.4 7.5 108 45 2.08 21.9 0.5 Day 14

[Faye R]

Hi I had 13 months of Vidaza stopped working for me toxicity was the cause also had bad side effects however the good news was it gave me 7 months of free blood transfusions they did get me blood transfusions for the first two months then when required until the 6th month in. I'm now back on to two to three weekly blood transfusions trying to look after my heart and inner self. I had an appointment with my haemo she was pleased with the way I looked.
Counts now read
Haem 93
HCV 97
Platelets 22
WBC 0.6
Neut 0.11
Dx RCMD

[bailie]

FayeR, how did the toxicity present? In a CBC, CMP or BMB? Or was in the way you felt? I have heard about the toxicity but I have never known what it is like. I have finished my 11th cycle of Vidaza with one to go.

Has the doctor said what she would try next? I wish you the best possible.

[kyis]

Well I did my cross and match for transfusion, but I was doing some pre transplant bloodwork yesterday (31st) and my hgb was up and I was feeling a little better, so I cancelled my transfusion.
So it appears things are getting better?, but I never trust this cancer and its next move.
Is this good or bad or who knows?
Do we want to see a drop in counts to show that it is working?
I hope to get another test Monday, but may put off if feeling even better.
Is it common to continue to have headaches?
Now wondering if to stay or change dosage and days (running at reduced)

I also found out yesterday that my match may still be available.
Not only a 10 of 10, but they also noted 2 other pluses, which I had never heard of. Actual blood type match helps, who knew? and also a match for CM negative. They should call it 12 for 12? This is great news.

Thank You to Everyone.

I cut and pasted from earlier post with adds.

HCT, Hgb, MCV, Platlets, Rb, rdw, wbc
11/9/15 MAN DIFF 26.7 8.9 120 54 2.22 14.5 0.5
12/16/15 MAN DIFF 28.3 9.6 119 61 2.37 14.5 0.8
1/19/16 MAN DIFF 26.5 8.9 119 40 2.23 14.7 0.4
2/9/16 MAN DIFF 25.9 8.9 118 55 2.20 14.7 0.8
2/22/16 MAN DIFF 22.7 7.7 119 52 1.91 15.1 0.5
2/26/16 MAN DIFF 21.1 7.1 121 46 1.75 15.2 0.7
3/4/16 MAN DIFF 21.3 7.1 121 48 1.76 15.0 0.8
3/9/16 MAN DIFF 20.5 6.9 120 56 1.71 15.0 0.5
3/13/16 MAN DIFF 29.3 10.1 107 45 2.74 25.0 0.6 After 2 unit transfusion (day before 1 shot)
3/28/16 MAN DIFF 22.4 7.5 108 45 2.08 21.9 0.5 Day 14
3/29/16 Felt probably my worse. Headhaches, fatigue just wierd
3/30/16 MAN DIFF 21.2 7.3 107 41 1.98 xxxx 0.6
3/31/16 24.4 8.4 110 48 2.23 25.4 0.5
4/1/16 Decided to wait on transfusion

[PaulS]

Hi - glad you're feeling better - and thats truly great news about the match!!

Enjoy the day.

Paul

[Faye R]

Hi Baille Toxicity presented it self in my platelet count they went from 92 to 16 within one month I started to bleed and bruise I'm now trying to get my platelets back up with alternative treatment wheatgrass etc.

[kyis]

End up with transfusion anyway yesterday as hgb ended up dropping anyway.
I've had a few episodes of feeling really weird and crappy. Coincidentally just prior to my transfusion I think it happened again noticed a drop in blood pressure. Anyone ever had that happen?
Also should dosing stay the same since no significant drop in counts, since I started at lower dosage anyway?
Last cbc I had a very slight jump in platlets.

[kyis]

Hi All,
Well I was going to start a new thread, but this should work I think.
Starting my 4th round of Vidaza Monday. It hasn't been terrible, but certainly not as easy as some people. Transfusions coming quicker at about 12 days now.
No changes in Blood counts yet and luckily my wbc stays about the same all the time at 500. ANC drops to 40 or so, but all is well.
Is there an ideal time for biopsy check?
Dr's want to perform after 4th. Is there a qty of days after last vidaza shot that would be best?
I'm on 5, off 2, on 2 days. so my last shot is day 9. July 3rd will be day 28 I think with July 4th being my next day 1. Of course it takes 7 days for results or can they get a blast count faster? They really want to perform SCT or BMT after my 4th round regardless it seems. Of course I"m somewhat reluctant and would like to get mds knocked down if possible.
It just seems to me we would see some improvement in blood counts before decrease in blasts? Someone with some history on this would be greatly appreciated. Thanks

[bailie]

I have had 17 BMBs. I almost always have them at 15-16 days after the BMB. My platelets start rebounding at about 12 days after the Vidaza (they are at a low about 10 days after Vidaza).

I get my blast count four days after BMB. The cut-off for blast count is usually no more than 12 percent, but they try to get it under 5 percent before having a SCT.