Hubby about to begin Obinutuzumab infusions....feeling anxious

[keikikumu]

Aloha! My husband (age 74) was diagnosed with CLL back in 2003 and had eighteen years of zero symptoms. After having a transient loss of vision in one eye that was ultimately related to a "tortuous vein" problem and a white blood cell count of over 200k, his oncologist placed him on Acalabrutinib for eight months. All went very well, WBC count went down significantly, until....it suddenly started rapidly rising again. Next step is Obinutuzumab therapy along with Venetoclax. He is scheduled to started Obinutuzumab infusions on Monday and we are both feeling anxious about the possibility of side effects. Would love to hear from anyone who went through this regimen. Thank you!

[SofiaDeo]

Hi, you have posted in an inactive forum. Please join the active "CLL Support". It's UK based but people from all over the world are there, many from the US and a number from Hawaii also. You can join, do a search, and read about many many people who have posted about the V&O journey, some even these past few weeks if you just start scrolling backwards. There are a lot of Pinned Posts explaining many things about CLL and the various treatments. I was a former oncology pharmacist, who now has CLL, and IMO it's one of the best resources for our rare disease on the planet.

[CLL23]

I had O & V last year and it was very effective with no side effects, except for one problem.

About half way through the infusions, I had a month of venetoclax with allopurinol to prevent tumor lyses. No problems at all.

But then, and the end of the year when my levels were normal and the infusions were over, the doctor for some reason advised another month of venetoclax but without the allopurinol. It took three days to end up in the ER with acute kidney failure. I almost ended up on hemodialysis for the rest of my life because my doctor was over the hill and become incompetent.

So . . . ask a lot of questions about the venotclax. And good luck!

[keikikumu in reply to CLL23]

thank you! We are all about asking questions and will continue to do so. Good to know about the allapurinol! Happy to hear your outcome was okay, but what a scare. Appreciate your response even though I received a note from the site manager saying this particular site is not in use anymore.

[Gisygirl]

I had 2 of the O infusions last year that wiped out my white cells and put me in the hospital for 6 days in May so no more of that.. was put on Venclexta and it took my body a few months to adjust resulting in another 6 days stay in July. But now all seems OK. But I was only on the Allopurinol for a few moths and I guess since my blood work showed no kidney effects, I was taken off it. After 1 year on Venclexta, still on it, after the doctor consulted with other CLL specialists. I do monthly labs.

[keikikumu]

Thank you for your response. Really glad to hear you're on a smoother path now; that was a rough start for sure. Hoping that my husband will hear today about the first infusion appointment that will be one day this coming week. I keep thinking about that old quote, "Forward ever, backward never." May your healing continue!

[robertp129]

O and V worked great for me. Challenging treatment but not awful. Cancer free for two years and I was just in for tests yesterday. All good. If you have a competent medical team this should go well.

[keikikumu in reply to robertp129]

thank you! Hoping for a minimally challenging first treatment, but sounds like if you can get thru #1, it's way easier as time goes on.

[sammyloo]

Hi, been on Ibrutinib for over a year and a half. Had some initial reactions with the first infusion of a small amount of IV obinotuzimab. The first iv of O was challenging, so they gave me Iv solumedrol, tylenol 500mg tab and 50 mg of benadryl caps for symptom management. I maybe would have had fewer initial symptoms if I had taken the meds before the actual administration of obinotuzimab--instead of when the reaction already started. Once I got through my first reaction to O, I never had a reaction like that again. The hospital told me that the first infusion of O sometimes has a one-time strong reaction--but they can treat it...Good luck.

[keikikumu in reply to sammyloo]

thanks for your input! We go in on Thursday, with high hopes it won't be too invasive. Many people have said similar things to your experience, and it's helped a lot to read what others have shared.

[tomcelic]

Hi Keikikumu I'm Thomas I started Obinutuzumab back in July, 5 months earlier. My experience has blessed me with the least side effects of any of the prev 5 treatment lines. Life is so hard, You are so Blessed to have so many years of zero symptoms. I am a 14 year total Waikiki resident.. Mostly at the Island Colony, full of beautiful people, close to the beach, close to the health restoring Pacific, and my beautiful friends I have known for over 35 years. I grew up in Hawaii, dated here, I married here, and someday I will be buried here, and my two children will have a place forever here in Hawaii reflecting the respect and love I have for people, the aina (land), and the ocean. Aloha I hope the titration goes well