Low platelets 54 down from 72: Hi I have a low... - CLL Support

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Low platelets 54 down from 72

Cazma profile image
13 Replies

Hi

I have a low platelet count and have to reduce venetoclax from 400 to 300 daily. Has anyone else had this experience Alos on monthly obinutuzumab. Thanks in advance

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Cazma profile image
Cazma
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13 Replies
Psmithuk profile image
Psmithuk

When my platelets tanked during the first round of Obinutuzumab (with Venetoclax), the consultant stopped the Obinutuzumab. I’ve only had the one round, and my platelets are slowly climbing, from the low 40s to 84 this week. This is since last year when I started the course (June 2021).Chris

Cazma profile image
Cazma in reply to Psmithuk

Thanks for your reply I've had the omab for 2 months and reached maximum venetoclax 27 December. I'm hoping this is just a blib as bloods were all good before reaching max venetoclax 🙂

cllady01 profile image
cllady01Former Volunteer

Yes, when my platelets went to 50, Dr. held off on V for 2 weeks and O for 3 weeks. As the platelets went to 84, I was told to take 200 mg V--and it appears I will stay on that dosage for now, since the Pharmacy was alerted to adjust prescription.

The platelets are bouncing a bit 58 then 68---I will have another O infusion on January 12.

Cazma profile image
Cazma in reply to cllady01

Thanks for the reply it helps when you don't feel alone 😊

cllady01 profile image
cllady01Former Volunteer in reply to Cazma

Cazma, you are so right. It helps also to know what your Dr. having you do seems to be a common practice--we do have to remember, however, how we are all different in degrees with CLL. It does appear you are in good hands with your Dr. I feel well cared for with my CLL care team.

Best wishes for all to go smoothly for you with the adjustments.

prljwendy profile image
prljwendy

My son had this but his platelets did go up again fairly quickly and he went back to the full dose.

Cazma profile image
Cazma in reply to prljwendy

Thanks for your reply it's very encouraging 😊

marrix profile image
marrix

Hi Cazma, I was on O+V starting in June 2020. After the 4th 1,000mg infusion of O my Platelets had dropped to 24 / 32 / 45 in consecutive weekly labs. My Hematologist suspended the O and put me on Neupogen (G-CSF) injections for 3 consecutive days. Then 2 weeks later suspended the V for 2 weeks then restarted at 200mg for 2 weeks then went back to 400mg. After a 3 month suspension of the O he restarted and finished the final 3 O infusions. I've been off of the V now for 2+ months after participating in the VenetoStop clinical study (was on V for a total of 16 months). I've now achieved uMRD via the ClonoSEQ assay, however my Platelets remain in the high 60's to low 70's. He is reluctant to prescribe IVIG since I'm not having any infections and doesn't want to risk any IV infections, instead wants to see a natural rebuilding of my immune system which he feels will take a full year after being off of both O & V.

I wish you the very best!!

Cazma profile image
Cazma in reply to marrix

Congratulations on your umrd. I'm thrilled for you and keeping fingers crossed for the same outcome ☺️

Shrbnd profile image
Shrbnd

Cazma,

My platelets dropped to 40 when my dose was increased to 300mg. My neutrophils also dropped I received a neulasta injection and the venetoclax was reduced to 200mg. My platelets increased to 75 after the shot and dose reduction. They have remained there once I stopped the Venetoclax 3 months ago after reaching umrd at 1 year.

Best wishes,

Paul

Italianpainter profile image
Italianpainter

Yes my platelets dropped to 79. My doctor had said that he didn't want me to go below 100 since I was simultaneously on Imbruvica. My dose of venetoclex was dropped to 300mg. I was also told by my second opinion doc from Dana Farber that 300mg was still a therapeutic dose and that I need not go back up to 400mg. It all worked. I'm in a deep remission now!

doris33 profile image
doris33

My platelets went to 30. Now back ofver 100.

Mariembm profile image
Mariembm

Hi, I'm a bit late to this thread, so hoping that your platelets are picking up. It happened to me after my third monthly Obinatuz... The Dr did the same as suggested and I stopped venetoclax for a few days and then went to 200 before increasing to 400 again. Platelets recovered and with 6 weeks to go on venetoclax they are back to around 80.

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