Hi Everyone
I'm starting treatment for first time next week. Afraid of the unknown. I will be receiving Obinutuzumab and Venetoclax. What are the main symptoms others have experienced? I know what I've been told but wondering what the main ones are I might expect. Also those who have completed this regime, are you in complete remission?
My last treatment was obinutuzumab monotherapy in 2015. I had no side effects and remain in remission. A handful of on line friends had the same treatment around the same time. Some had minor reactions to their first dose - the 100 mg of the back to back split dose - mostly stomach upsets, but no problems with the rest of their infusions. That seems to be fairly common. Most important is staying well hydrated to flush dead and dying cells out of your system, and telling the infusion nurses IMMEDIATELY if ANYTHING feels even slightly off, itchy ear - anything. They can stop the infusion, add pre meds, and / or slow the infusion rate to prevent a serious reaction. Others here can tell you about their experiences with Venetoclax or with both. Let us know how it goes.
Thank you for your response. As I stated I'm feeling afraid and even judging my decision to go this route. Your words give more me a little more peace in my decision.
My first treatment, 17 years ago, was with Rituxan (in the same “family” as obinutuzumab). I have said many times that the longest 5 minutes of my life was the 5 minutes sitting in the infusion chair waiting to be hooked up. I was very sick at the time, knew nothing about CLL, and didn’t have any kind of support system or group yet. I just knew that not getting treatment was not a choice. I was blessed to sit next to an amazing woman - a patient who was also a nurse. She talked me through that whole first infusion. I sailed through it, and all of the ones that followed, and got 10 years remission.
Take food and things to do. I always take a couple of things so I can switch activities if I get bored with one. It is a long sit. Don’t be surprised if you feel like sleeping once the IV Benedryl hits - best knock out drug ever - nothing like the pills.
You should have a driver until you get past needing the Benedryl pre med - usually after the day one back to back infusion. If it’s someone who will be staying with you in the infusion room, tell them to bring things to entertain themselves, so you don’t feel like you have to stay engaged when you just want to sleep.
My one frustrating experience was the day someone from my school insisted that she needed to meet me for one of my infusions “ to support me”. I felt like I had to entertain her the whole time, while my head kept saying close your eyes. Never again. I’m a hopeless people watcher and enjoy watching the different dynamics between patients and caregivers now.
Tuesday is my day in the chair for IVIG (11:00 PDT). If your infusion is around the same time let me know. We can chat when you’re awake. That would be a hoot!
MLYP - it is always good to be reminded what it was like for long-timers, like yourself, who did not have the easy access to information, the options for treatment and the support of online forums and websites we enjoy now.
It was tough enough in 2009 when my husband was first diagnosed - can't imagine how hard it must have been over 17 years ago.
It's a real benefit having someone like yourself on the forum that can provide that perspective.
Thanks!
D.
My husband started only Obinutuzumab this July. I think it is important, if you have someone go with you. My husband didn’t have a reaction during the infusion, but his blood pressure dropped dramatically the day after.
He felt dizzy and very fatigued. It took about two weeks to stabilize.
His last infusion is going to be in December. He is feeling pretty good now. His spleen has shrunk and his lab tests improve every time we check.
I'm very interested in your outcome and best wishes to you! I hope you come back to this post to let us know how things go. Am I correct in assuming this is a one year treatment plan with hopes of achieving remission and to be treatment free after a year? Thanks!
Welcome Booper! I am not qualified to counsel on your situation - I had FCR.
However - I went into FCR fearful of its reputation and of the side effect potential. I did also know that it was preferable to no treatment.
I would counsel you to focus on the likely outcome - and for that look to others who reply who have been there and know.
Please share with us your journey - we can teach each other so much.
Be of courage! The likelihood is that you have a long road ahead - and hopefully one of better health.
Best wishes
Jig
I’ve been through 5 cycles of obinutuzumab and my only issues have been nausea and headaches during the infusion. It’s truly important that you let your infusion team know immediately if you feel the slightest bit funny during the infusion ! My numbers are the best they have been in years! I was diagnosed at 46 and was W&W for 8 years until this past June.
Good luck!
Teb0513
Thanks for the post Booper57! You have no idea who you are helping, like me. I will see my Dr. tomorrow and will begin Venetoclax and Obintuzumab soon. Please do update us on your progress and experience with your treatment and I'll do the same. This forum has been such a HUGE help to me and continues to be a wealth of information. Best of luck hoping for the best for both of us!
Lorna
I am on my third month of Venetoclax and Rituximab (similar to Obinutuzumab) with no major problems. My painful, enlarged nodes are gone, and fatigue is much better, anemia is gone. I do get nausea almost every day, but it isn’t terrible. I am very happy with the results so far. I go for another infusion tomorrow and blood tests, so I’ll know a bit more about how it is all going tomorrow.
Good luck with your treatment. I hope it goes well for you.
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