MDS Myelodysplastic Syndromes

Expand all | Collapse all

Vidaza treatment put off for the fourth consecutive week

  • 1.  Vidaza treatment put off for the fourth consecutive week

    Posted Nov 20, 2017 12:41 AM
    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?


  • 2.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Nov 20, 2017 11:40 PM
    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.


  • 3.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Nov 21, 2017 07:14 PM
    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.


  • 4.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Nov 23, 2017 11:02 PM
    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.


  • 5.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Nov 25, 2017 11:21 PM
    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.


  • 6.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Nov 26, 2017 03:02 PM
    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.


  • 7.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Nov 26, 2017 11:57 PM
    Quote:
    Originally posted by Cheryl C â–º
    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


  • 8.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Nov 29, 2017 09:35 PM
    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.


  • 9.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Dec 27, 2017 02:26 AM
    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.


  • 10.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Dec 28, 2017 01:07 AM
    Quote:
    Originally posted by ritu â–º
    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.


  • 11.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Dec 28, 2017 10:37 PM
    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


  • 12.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Dec 29, 2017 11:16 AM
    Quote:
    Originally posted by ritu â–º
    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.


  • 13.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Dec 31, 2017 08:37 PM
    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 senior’s 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 —- but she never gave up and takes each day as they come. I admire her and love her dearly.


  • 14.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Jan 01, 2018 12:56 AM
    Quote:
    Originally posted by Annettec â–º
    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 senior’s 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 —- 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.


  • 15.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Jan 01, 2018 11:55 PM
    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.


  • 16.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Jan 02, 2018 09:55 AM
    Don't worrry
    Quote:
    Originally posted by ritu â–º
    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.


  • 17.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Jan 08, 2018 01:04 AM
    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.


  • 18.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Jan 09, 2018 12:09 AM
    Quote:
    Originally posted by ritu â–º
    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.


  • 19.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Jan 09, 2018 02:31 AM
    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.


  • 20.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Jan 10, 2018 05:48 PM
    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.


  • 21.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Jan 10, 2018 10:49 PM
    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


  • 22.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Jan 11, 2018 12:36 AM
    🙂 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.


  • 23.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Jan 11, 2018 11:51 AM
    Quote:
    Originally posted by ritu â–º
    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.


  • 24.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Jan 29, 2018 01:34 PM
    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 â–º
    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.


  • 25.  RE: Vidaza treatment put off for the fourth consecutive week

    Posted Jan 30, 2018 12:56 AM
    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