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Please Share Your Experience With Obinutuzumab Infusion
My husband has been dx with CLL. After a bone marrow biopsy his hematologist recommended starting the treatment. There is an option of taking Brukinsa, but he prefers the immunotherapy.
I would be very much appreciated if you could share your experience with Obinutuzumab infusion and oral Venetoclax. I’m concerned with the side effects and what we can do to alleviate them.
Thank you.
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Hi @myoga. There have been many advancements in cancer treatments over the years, especially for conditions like CLL. So your husband may have a couple of options ahead of him.
If it’s helpful, I’ve found a number of discussions for you with members receiving Obinutuzumab treatments. Here’s the link to all of the conversations https://connect.mayoclinic.org/search/
Cll is often very slow to develop and may take several years before requiring treatment. Was your husband having noticeable changes in his health that lead to his diagnosis of CLL or was this found with routine blood work?
@loribmt
Hi Lori Thank you for the link!
My husband was dx last year but I suspect that he’s had CLL for years. His WBC was always on the high side but his PC never mentioned the possibility of CLL until last year when his WBC was over 20k. The plan was watch and wait at the beginning until the hematologist ordered bone marrow biopsy and according to her there is something found in the report that she recommended to start the treatment now. He doesn’t exhibit any serious symptoms except bruising easily. He lost weight at beginning but now his weight is stable.
There’s an option of taking Brukinsa but he dislikes the idea of taking drug for life. The doctor said Brukinsa can be effective for around 5 years but not sure if another BTK inhibitors would be effective after that.
Hi, my CLL was treated with Obinutuzumab and Venetoclax in 2024. I had 6 months of Obinutuzumab and was supposed to have 12 months of Venetoclax. I had to stop treatment after 7 months due to very serious pulmonary complications which I still deal with today. The good news is my CLL is in remission. However the treatment caused severe immune deficiency (I do weekly infusions of immunoglobulin), Bronchiectasis and revealed that I have CFTR-RD (Cystic Fibrosis related disease), so I struggle with lung infections and lung damage. If you decide on the treatment, please make sure your Oncologist pays close attention to pulmonary issues (mine did not and I ended up and Mayo - who saved my life).
Good Luck!
@gails53
Thank you so much for shattering your experience. We’ll definitely request the hematologist to pay close attention to his lungs. I’m so sorry that you’ve suffered so much to get to the remission stage. I’ll keep you in my prayers tonight that you’ll continue recovery well. Miracles do happen.
Did you have CFTR-RD in the past or it was also caused by the treatment?
We live in California and don’t have access to Mayo Clinic. That worries me a lot!
BTW, my husband is the one with CLL, I’m the one with breast cancer and brca2 mutation carrier. We’re a lucky couple!
Again, thank you so much for generously sharing your experience. Hugs.