Obinutuzumab early update blow me down - CLL Support

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Obinutuzumab early update blow me down

TheFlyer profile image
8 Replies

Hi All

Started this on the 9th. 100ml then remainder on the 10th July.

No reactions at all bloods taken on the 9th after trial infusion showed slight increase from 222k to 232k.

remainder on the 10th all ok had a blood test yesterday.

WBC was 232k now on the 15th July 3900 Its amazing, unbelievable.

Infusion today number 3 no issues.

Best wishes

Julian

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TheFlyer profile image
TheFlyer
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8 Replies
Poodle2 profile image
Poodle2

Hey Julian, I told you so! 😉 The treatment is amazing, I felt better after the first infusion, it was like a miracle, honestly ...and the reduction in lymphocytes and the speed of recovery was quite astonishing. I wish you all the best, feel free to read my posts, I tried to keep a diary so it could help others on their journey. It helped me immensely when I was reading posts from other people. Keep drinking your 2l a day, don't overdo it when you suddenly feel like you have the energy to do a million and one thing in a day 🙂watch out for fever - there is a risk of neutropenic sepsis, not uncommon during the first few weeks - any fever, go to your nearest A&E. Keep us updated!Petra ❤️

TheFlyer profile image
TheFlyer in reply to Poodle2

I'm on it all.

stevesmith1964 profile image
stevesmith1964

It's a great MAB, I was diagnosed stage 4 will 100% marrow infiltration (age 57) with a wbc of 3k , hb 80 , plts 40...straight to O+I , in uMDR in 240 days. On alcalibrutinib twice daily and monthly bloods stable. Have been in remission for 3 yrs now , MRD checked every 6 months. I live a fill and active life as a full time dad , at 60, to my 6 and 4 yr olds. Stay positive... drink wine and eat steak

garyherm profile image
garyherm

very pleased for you. Had similar fast response to initial doses. Pray all continues to go well for you.

RedWyvern profile image
RedWyvern

I’m glad it’s going so well for you.

I’m over half way through my V&O and had no real side effects apart from a little weight gain, probably due to the steroids.

Sounds like it could go the same way for you.

Get ready for some long boring days.

Poodle2 has some great advice in her comment,

Keep drinking plenty of water to flush your kidneys.

LeoPa profile image
LeoPa

Lucky you!

Sojomama13 profile image
Sojomama13

Yay!!! Excellent news to wake up to this morning!!! I don’t know what was more scary to me watching my numbers climb or being told I needed to start treatment. Started Acalabrutinib first, but it was the Obinutuzumab infusions that really helped beat back my numbers . Glad you are well!!!

Best,

Sandy

PS— Drink the water!!!!

BarneyFife profile image
BarneyFife

Great news. I had finished the obinutuzumab infusions almost a year ago. Now, no meds, great energy level, no side effects. Hopefully you will continue to get through this treatment with minimal side effects. Good luck.

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