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  #1  
Old Mon Nov 20, 2017, 12:40 AM
AliceKay1 AliceKay1 is offline
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Vidaza treatment put off for the fourth consecutive week

My numbers are too low for the fourth week in a row, and vidaza is put off, again. I'm getting worried that I'm not going to be able to tolerate this treatment.
Has anybody else had this happen? What did it mean? And what could be done about it?
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AliceKay1, 79 years old, dx MDS 2017, being treated with Vidaza
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  #2  
Old Mon Nov 20, 2017, 11:40 PM
ritu ritu is offline
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Hi Alice

My Mum is suffering from MDS and she is under going second cycle. it was due on 11th buut was put on hold as her WBC was just 1000. Her WBC were 1210 on 18th Nov and as per doctors they cannot wait any longer and started Vidaza. After second day her WBC has come up to 1910 and the doctor say that they can go ahead with these numbers. What are your numbers.
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  #3  
Old Tue Nov 21, 2017, 07:13 PM
AliceKay1 AliceKay1 is offline
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WBC is 3000.

Ritu, thank you for replying. My WBC is 3000. I just talked to my doctor's nurse, and she explained the numbers to me. I guess I don't have anything to worry unduly about.
Good luck with your mom. My daughter oversees everything with me, and she's very good about it, as well. Both your mom and I are lucky to have you two.
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AliceKay1, 79 years old, dx MDS 2017, being treated with Vidaza
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  #4  
Old Thu Nov 23, 2017, 11:01 PM
ritu ritu is offline
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Hi Alice
Thanks, I hope your numbers will be back to normal soon. Yes I know how hard it is for your daughter to see you in this state, I love my mom a lot and too worried about her. She is just 64 and just cannot imagine loosing her, so just hope she gets into remmision with Vidaza. I hope you also are able to sail through and get well soon.
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  #5  
Old Sat Nov 25, 2017, 11:20 PM
Cheryl C Cheryl C is offline
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Are your white cells the only low number? Just interested, as for me 3000 would be excellent, since I've been living with average WCC around 1500-1700 for the last 10 years and by choice am not on any chemo - just IV gamma globulin every 6 weeks which seems to keep me pretty stable.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #6  
Old Sun Nov 26, 2017, 03:02 PM
AliceKay1 AliceKay1 is offline
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Both WBC and platelets

Wow, Cheryl! If I'm understanding, it looks like you're doing really well. So glad to hear it!

And no, it's my white blood cells and platelets, both too low for treatment again this week for the fifth week. Doctor says it's ok, that my numbers are slowly increasing.
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AliceKay1, 79 years old, dx MDS 2017, being treated with Vidaza
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  #7  
Old Sun Nov 26, 2017, 11:56 PM
ritu ritu is offline
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Quote:
Originally Posted by Cheryl C View Post
Are your white cells the only low number? Just interested, as for me 3000 would be excellent, since I've been living with average WCC around 1500-1700 for the last 10 years and by choice am not on any chemo - just IV gamma globulin every 6 weeks which seems to keep me pretty stable.
Hi Cheryl

My mom HB is 8.6 and Platelets in normal range, but like you she is struggling with low WBC it is 1800 last week immediately after taking Vidaza . So I hope she also continues like you.

Ritu
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  #8  
Old Wed Nov 29, 2017, 09:35 PM
Cheryl C Cheryl C is offline
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A hint for those struggling with low WCC: keep off the sweets! Fresh and dried fruit and pure unheated honey or stevia for sweetening all seem to be OK for me, but other types - esp cane sugar - tend to cause sore throats and lots of phlegm.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #9  
Old Wed Dec 27, 2017, 02:26 AM
ritu ritu is offline
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Hi

My mom has just completed 3rd cycle of vidaza but her counts are not good at all.

HB-7.50
Platellets-90000
RBC-2.22
WBC-1100
Neutrophils-0.14

Me too worried with these numbers, does that mean Vidaza is not working. Any thoughts should we go for BMB now or after the 4th cycle.
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  #10  
Old Thu Dec 28, 2017, 01:07 AM
AliceKay1 AliceKay1 is offline
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Quote:
Originally Posted by ritu View Post
Hi

My mom has just completed 3rd cycle of vidaza but her counts are not good at all.

HB-7.50
Platellets-90000
RBC-2.22
WBC-1100
Neutrophils-0.14

Me too worried with these numbers, does that mean Vidaza is not working. Any thoughts should we go for BMB now or after the 4th cycle.
What's BMB, Ritu?
Yeah, those numbers are low, but it's still really early in the process for your mom. My doctor keeps assuring me that the vidaza is working. I finished my fifth cycle two weeks ago, and just today I'm starting to feel a little better. I start my sixth cycle January 2. I have a whole week to feel good before they know my numbers down again.
Good luck. Keep in touch.
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  #11  
Old Thu Dec 28, 2017, 10:36 PM
ritu ritu is offline
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Hi

BMB means Bone Marrow Biopsy. yes I hope she will respond after forth cycle. Does your nos go down after each cycle and they gradually come up.

Ritu
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  #12  
Old Fri Dec 29, 2017, 11:15 AM
AliceKay1 AliceKay1 is offline
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Quote:
Originally Posted by ritu View Post
Hi

BMB means Bone Marrow Biopsy. yes I hope she will respond after forth cycle. Does your nos go down after each cycle and they gradually come up.

Ritu
Yes, Ritu, they do.
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AliceKay1, 79 years old, dx MDS 2017, being treated with Vidaza
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  #13  
Old Sun Dec 31, 2017, 08:36 PM
Annettec Annettec is offline
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For encouragement, my mother was diagnosed in May 2014 at the age of 77. Her blasts were 13%... she started Vidaza and was treated until February 2017 when the doctor informed us that it was no longer effective. She has been off treatment and only getting supportive care (transfusions) since. With the exception of a bad infection in April 2017, she has been feeling better than when she was on treatment. Her numbers are really low (platelets around 4000 to 20,000) and requires red blood transfusions every 3-4 weeks. She no longer gets platelets ( since April 2017). She lives in a seniorís residence (with independent living), and although her world has become small (few outings ), she still enjoys life as she has a wonderful support group which includes her 3 wonderful sisters. She accepts her condition, is not afraid to die and sees every day as a gift from God.

I hope this helps....where there is life, there is hope. Her story proves this. Her doctors, for the most part, gave up on her a long time ago ó- but she never gave up and takes each day as they come. I admire her and love her dearly.
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  #14  
Old Mon Jan 1, 2018, 12:55 AM
AliceKay1 AliceKay1 is offline
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Quote:
Originally Posted by Annettec View Post
For encouragement, my mother was diagnosed in May 2014 at the age of 77. Her blasts were 13%... she started Vidaza and was treated until February 2017 when the doctor informed us that it was no longer effective. She has been off treatment and only getting supportive care (transfusions) since. With the exception of a bad infection in April 2017, she has been feeling better than when she was on treatment. Her numbers are really low (platelets around 4000 to 20,000) and requires red blood transfusions every 3-4 weeks. She no longer gets platelets ( since April 2017). She lives in a seniorís residence (with independent living), and although her world has become small (few outings ), she still enjoys life, Aas she has a wonderful support group which includes her 3 wonderful sisters. She accepts her condition, is not afraid to die and sees every day as a gift from God.

I hope this helps....where there is life, there is hope. Her story proves this. Her doctors, for the most part, gave up on her a long time ago ó- but she never gave up and takes each day as they come. I admire her and love her dearly.
Thank you so much, Anettec. Happy News Year to you and yours.
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AliceKay1, 79 years old, dx MDS 2017, being treated with Vidaza
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  #15  
Old Mon Jan 1, 2018, 11:55 PM
ritu ritu is offline
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Hi

Thanks for the reply. I hope my mom also respond well to Vidaza. Recently for the past 10 days she has been sweating in the night. It started with 3rd cycle and continuing, is it anything to worry. Please advise.
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  #16  
Old Tue Jan 2, 2018, 09:54 AM
AliceKay1 AliceKay1 is offline
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Don't worrry

Quote:
Originally Posted by ritu View Post
Hi

Thanks for the reply. I hope my mom also respond well to Vidaza. Recently for the past 10 days she has been sweating in the night. It started with 3rd cycle and continuing, is it anything to worry. Please advise.
I'm sure there's nothing to worry about, but be sure she doesn't get dehydrated. She needs to be drinking plenty of fluids - around two quarts - every day to flush out the chemo.

Mention the night sweats to her chemo nurse next time, but I wouldn't worry.
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AliceKay1, 79 years old, dx MDS 2017, being treated with Vidaza
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  #17  
Old Mon Jan 8, 2018, 01:04 AM
ritu ritu is offline
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Hi Alice

WBC are getting too low and now matter of concern, I donot know what to do. Can anything be done to increase them. I am too worried now. She had an infection in one of the tooth and was in extreme pain, her dentist is trying to fix the same. But I think it is due to low WBC.
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  #18  
Old Tue Jan 9, 2018, 12:08 AM
AliceKay1 AliceKay1 is offline
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Quote:
Originally Posted by ritu View Post
Hi Alice

WBC are getting too low and now matter of concern, I donot know what to do. Can anything be done to increase them. I am too worried now. She had an infection in one of the tooth and was in extreme pain, her dentist is trying to fix the same. But I think it is due to low WBC.
What does her doctor say? I'll be very interested.
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AliceKay1, 79 years old, dx MDS 2017, being treated with Vidaza
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  #19  
Old Tue Jan 9, 2018, 02:31 AM
ritu ritu is offline
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Docs say nothing as such, they will go with 4th cycle and then they will do biopsy to see the blast cell. Yesterday the doc said that as monocytes are not getting down it means that Vidaza has not shown any progress. Any thoughts on that. Can you check with your doctor please.
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  #20  
Old Wed Jan 10, 2018, 05:47 PM
Dick S Dick S is offline
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Hope

I am in the midst of my 12th cycle this week as we speak. Not getting any better with HGB in the high 8s, but thank God not getting worse either. I had one problem in the beginning, started getting 150mg of Vidaza for 5 day cycle, my WBC dropped below 1.0 and Neutrophils dropped to .8. They immediately adjust the dose to 100mg and now WBC hover just below 4 and Neutrophils around 1.8. For now, I will take what I can get and hope.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.

Last edited by Dick S : Thu Jan 11, 2018 at 11:52 AM.
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  #21  
Old Wed Jan 10, 2018, 10:49 PM
ritu ritu is offline
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Hi Dick

Thanks a lot for valuable advise, I will also have to check with the doctors for adjusting the dosage. Currently they are giving 750mg in the span of 7 days and that is affecting her WBC a lot. How long your doctor says you can go with Vidaza
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  #22  
Old Thu Jan 11, 2018, 12:36 AM
AliceKay1 AliceKay1 is offline
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Smile Agree with Dick

Ritu, I agree withDick. We just need to trust that the doctors know what they're doing and hope for the best. Certainly, it's important to remain hopeful and positive as much as we can.
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AliceKay1, 79 years old, dx MDS 2017, being treated with Vidaza
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  #23  
Old Thu Jan 11, 2018, 11:51 AM
Dick S Dick S is offline
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Originally Posted by ritu View Post
Hi Dick

How long your doctor says you can go with Vidaza
They say maybe another year or more. As long as I stay stable with the dosage I'm getting now at least it's holding off the possible need for blood transfusions or the possibility of slipping into something worse such as AML. I've been patient this long, so why not, I'm 83, I'll take what I can get now. Good luck with yours.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.

Last edited by Dick S : Thu Jan 11, 2018 at 12:35 PM.
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  #24  
Old Mon Jan 29, 2018, 01:34 PM
bobspez bobspez is offline
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I have CMML. I had an ifected tooth and abcess in the gum above the tooth. I was advised to have the tooth pulled and the abcess drained which I did, to avoid the infection coming back. I took hydrocodone when the tooth was pulled. Only needed it once when the pain was unbearable. But it was a great relief.

Quote:
Originally Posted by ritu View Post
Hi Alice

WBC are getting too low and now matter of concern, I donot know what to do. Can anything be done to increase them. I am too worried now. She had an infection in one of the tooth and was in extreme pain, her dentist is trying to fix the same. But I think it is due to low WBC.
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Age 71. April 2016 diagnosed with SMZL (splenic marginal zone b-cell lymphoma). In remission after 8 weekly infusions of Rituxan. Sept 2016 diagnosed with CMML-1. Presently on watch and wait.
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  #25  
Old Tue Jan 30, 2018, 12:55 AM
ritu ritu is offline
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Hi

Yes mom had a very tough time after tooth pull. She was in extreme pain and had to be admitted to hospital. She is better now but not completely recovered. She is undergoing 4th cycle of Vidaza.

Ritu
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