Terrible Blood Counts after Vidaza

[joesmith]

I am writing as I need advice from you for my mom who has just started Vidaza and completed the first cycle. My mom who is aged 60 years was diagnosed with secondary MDS in Sep 2013 (She is a Stage IV Breast Cancer Survivor). Her blasts have been between 7% to 15% (One doctor indicated 7% and the other 15%). She has no chromosomal abnormalities. She is not a candidate for transplant given the secondary MDS. Since Sep until 2 weeks ago she has been on painful growth factor injections and transfusions for RBC's. No platelet transfusions. She just started Vidaza two weeks back and completed the 7-inj course on Monday last week. She is expereincing serious drop in blood counts particualrly with platelets. Her Platelets were 14K before she started vidaza. Day 3 of Vidaza she had to take her first platelet transfusion as her platelet count had fallen to 5000. 3 days after her 7th dose of Vidaza her platelets dropped again to 5000 and she was given a second transfusion that caused an infection leading to fever and hosipitalization. She was given another dose of platelets at the hospital but her body outright rejected it. She has also had 3 RBC transfusions without any side effect since the start of Vidaza. After the 7th dose of Vidaza, starting on day 10 all three blodd counts have dropped drastically. My mom is on Day 15 now and her counst are WBC 1400, RBC fell to 7 but after multiple transfusion is around 10, platelets are only 4000 to 5000 (which the doctors consider as ZERO medically). My mom is in day

A few questions:

(a) Is this sharp drop of blood counts normal?

(b) On what days after the last dose of vidaza is the drop of blood counts the most?

(c) typically on what day forward do the blood counts start increasing?

(d) we are most concerned with her platelets. From your experience when can we expect to start seeing an increase in platelet counts?

Can you give any additional advice on what we can do to improve her counts, overall health and prepare for the second round of Vidazaz?

Does this drop in blood counts continue each month (every 4th week) or is this only in the first cycle? Any other advice?

Appreciate your guidance in this dark hour.

[Whizbang]

Joe,

(a) yes it is common for PLT's to drop, and depending on the individual, it depends on how long it will take to recover. Your Mom's PLT's were already pretty low...

as for (b), (c), and (d) again it's different for everyone, age and overall response are big factors...

I did Dacogen, which is extremely similar to Vidaza last year, and here are my numbers by date:

Component  Standard Range  7/18  7/30# 8/15  8/22  8/29  9/09# 9/16  9/20  10/7
RDW-CV     11.6-14.4 %     16.1  15.1  13.8  18.5  17.0  14.3
RDW-SD     35.1-43.9 fl    51.5  48.1  40.9  55.9  53.5  45.0
HGB        13.7-17.5 g/dl  11.0  11.0   9.9  10.6  11.9  13.9  14.4  13.9  15.4
HCT        40-51 %         31.7  32.4  27.8  30.3  35.4  41.1  43.5  40.6  45.7
PLT        150-400 K/ul      95    91    51    60   209   333   249   176   209
RBC        4.63-6.08 M/uL  3.56  3.64  3.29  3.45  4.07  4.76  5.01  4.74  5.43
WBC        4.2-9.1 k/ul     3.2   3.5   2.6   1.7   1.8   2.2   4.0   4.1   3.5
NEUT%      34-68 %           53    62    52    31    32    46
NEUT       1.8-9.0 K/uL     1.7   2.2   1.4   0.5   0.6   1.0   2.7   3.0   2.1
LACT-DEH   313-618 U/L      670   598   ---   688   ---   517   ---   ---   557*
BILIRUBIN  0.2-1.3 mg/dL    1.5   1.1   ---   1.8   ---   1.0   ---   1.0   ---
# started Dacogen chemo
*estimate based on different testing ranges

[bailie]

My counts bottomed out just before the second cycle. Then they slowly got better in cycles 2-4. By the 5th cycle my blood counts were almost all in the normal range.
We wish you the best.

[Birgitta-A]

Hi joesmith,
It is not common that growth factor injections and txs are painful. What growht factors have your mother received?

Good that you look out for complications when your mother's counts are so low.

Too bad that your mother couldn't tolerate platelet txs! Hopefully her platelets function well. Has she any signs of bleeding like petechia (very small bleedings in the skin), nose bleeding or blood blisters in her mouth?

Remember that we should try to avoid everything that can decrease platelets or increase bleedings. http://www.pdsa.org/about-itp/warnings.html. All kinds of pain killers can decrease platelet.

There is a growth factor for platelets called Promacta. It is not approved for MDS patients but trials have showed positive results in trials. Another growth factor, Nplate, should be avoided since it can increase the risk for leukemia.

Hope your mother's counts will increase!
Kind regards
Birgitta-A

[joesmith]

Originally Posted by Whizbang

Joe,

(a) yes it is common for PLT's to drop, and depending on the individual, it depends on how long it will take to recover. Your Mom's PLT's were already pretty low...

as for (b), (c), and (d) again it's different for everyone, age and overall response are big factors...

I did Dacogen, which is extremely similar to Vidaza last year, and here are my numbers by date:

Component  Standard Range  7/18  7/30# 8/15  8/22  8/29  9/09# 9/16  9/20  10/7
RDW-CV     11.6-14.4 %     16.1  15.1  13.8  18.5  17.0  14.3
RDW-SD     35.1-43.9 fl    51.5  48.1  40.9  55.9  53.5  45.0
HGB        13.7-17.5 g/dl  11.0  11.0   9.9  10.6  11.9  13.9  14.4  13.9  15.4
HCT        40-51 %         31.7  32.4  27.8  30.3  35.4  41.1  43.5  40.6  45.7
PLT        150-400 K/ul      95    91    51    60   209   333   249   176   209
RBC        4.63-6.08 M/uL  3.56  3.64  3.29  3.45  4.07  4.76  5.01  4.74  5.43
WBC        4.2-9.1 k/ul     3.2   3.5   2.6   1.7   1.8   2.2   4.0   4.1   3.5
NEUT%      34-68 %           53    62    52    31    32    46
NEUT       1.8-9.0 K/uL     1.7   2.2   1.4   0.5   0.6   1.0   2.7   3.0   2.1
LACT-DEH   313-618 U/L      670   598   ---   688   ---   517   ---   ---   557*
BILIRUBIN  0.2-1.3 mg/dL    1.5   1.1   ---   1.8   ---   1.0   ---   1.0   ---
# started Dacogen chemo
*estimate based on different testing ranges

Thanks for the detailed response and the table indicating how you counts progressed through the treatment. Its great that your blood counts are now close to normal. Wish you the best.

[joesmith]

Originally Posted by bailie

My counts bottomed out just before the second cycle. Then they slowly got better in cycles 2-4. By the 5th cycle my blood counts were almost all in the normal range.
We wish you the best.

Thanks for the prompt response. Its great that your blood counts are now close to normal. Wish you the best. Your experience gives us hope to stay strong and hopeful and we go through the treatment.

[joesmith]

Originally Posted by Birgitta-A

Hi joesmith,
It is not common that growth factor injections and txs are painful. What growht factors have your mother received?

Good that you look out for complications when your mother's counts are so low.

Too bad that your mother couldn't tolerate platelet txs! Hopefully her platelets function well. Has she any signs of bleeding like petechia (very small bleedings in the skin), nose bleeding or blood blisters in her mouth?

Remember that we should try to avoid everything that can decrease platelets or increase bleedings. http://www.pdsa.org/about-itp/warnings.html. All kinds of pain killers can decrease platelet.

There is a growth factor for platelets called Promacta. It is not approved for MDS patients but trials have showed positive results in trials. Another growth factor, Nplate, should be avoided since it can increase the risk for leukemia.

Hope your mother's counts will increase!
Kind regards
Birgitta-A

Hi Birgitta,

Thanks for the prompt response. Earlier you had shared with the information on foods and supplements to avoid when dealing with low platelets and I very much appreciate it. So far my mom has not had any bleeding or petecia and she is taking the highest levels of care when it comes to brushing or chopping or doing daily chores.

My mom received Neupogen which were painful particularly at the long bones in the body. She hasnt been given any Neupogen post the first round of Vidaza. Her doctor has indicated that Promacta would be the last resort and at this time the only thing to do is wait and watch. She goes in for her next CBC after 2 days.

[Birgitta-A]

Hi Joesmith,
Good that your mother's platelets seem to function well!

I thought that it was the injection of Neupogen that was painful - bone pain is unfortunately a common adverse effect. Hope your mother will manage with neutrophils of 1400!

You know that Roberta Roberts had secondary MDS after breastca like your mother and got a SCT with positive result this far.
Kind regards
Birgitta-A

[joesmith]

Originally Posted by Birgitta-A

Hi Joesmith,
Good that your mother's platelets seem to function well!

I thought that it was the injection of Neupogen that was painful - bone pain is unfortunately a common adverse effect. Hope your mother will manage with neutrophils of 1400!

You know that Roberta Roberts had secondary MDS after breastca like your mother and got a SCT with positive result this far.
Kind regards
Birgitta-A

Hi Birgitta - Thanks for sharing Roberta Roberts info. I will connect with her to learn about her experiences.

Mom's CBC after 15 days of the last of the 7 injections of Vidaza still show platelets of only 4000K with no sign of any increase. Has anyone else experienced such low platelet counts with Vidaza even after 15 days. The only positive is that her WBC went up to 1900.

Appreciate if anyone can add/share their experience with such dangerously low platelets even after 15 days.

[sbk007]

Hi Joesmith,
I think she was referring to Robin Roberts the talk show host on Good Morning America. If you search for that name you'll find lots of info on her and she wrote a book about it.
All the best

[Birgitta-A]

Hi skb007,
Yes of cause I was referring to Robin R - I read much about her when she got her SCT and as far as I know she is doing well.
Kind regards
Birgitta-A

[joesmith]

Originally Posted by sbk007

Hi Joesmith,
I think she was referring to Robin Roberts the talk show host on Good Morning America. If you search for that name you'll find lots of info on her and she wrote a book about it.
All the best

Thanks sbk007. I did not realize Brigatta was referring to the ABC Good Morning America host. Yes Robin's struggle and story is amazing and is nothing short of a beacon of hope for millions of patients particularly women all over the world.