Hi.
I start treatment next week and have been told the drugs I will be having are Obinutuzumab and Venetoclax.
I wondered if anyone here had recieved treatment with this dug combination ? And what can I expect with regards to side affects and other issues? .
I have had this and a lot more information from my specialist, but I would love to know from someone who has been through the treatment.
Many thanks as always
Chucky. X
I had V+O during the worst of the pandemic 
It's not bad at all honestly...the Obinutuzumab infusions can have some tricky side effects, but all I experienced was dizziness and a touch of nausea and sweats on the first go. The next ones all went very smoothly and I slept through them thanks to the Benadryl they give you. The Venetoclax worked like a charm for me - no issues on ramp up (but take seriously their water requirements - you really do need to drink at least 2 liters a day!) and it kicked my CLL in 11 months. The only negative for me has been that I've developed severe psoriasis post-treatment, but there's no guarantee there's a link.
Thank you so much for tatting back to me jijic, you have no idea how much you have calmed my nerves with tha reply.
How were your energy levels during treatment?
For the first month/the first two Obi transfusions, it was really difficult - I felt weak, sweaty, and fatigued. Of course, it was also June in Europe, so that didn't help. However, after that phase, my energy went through the roof and pretty much remained there until I got COVID earlier this year (but I'm back to pretty solid energy levels now).
Just finished my treatment, 6 cycles of obinutuzumab (O) and 12 months of venetoclax (V). First infusion of O was rough, after that a breeze. Only noticable side effect of V was thumb joint pain. I've had more energy this summer than I've had in years. Get my MRD test this week, hoping for the best.
One thing I would like to add. For the cost of the V you should be able to get help through your oncology provider or the V manufacturer. I didn't have to pay anything! Provider got me a grant to cover what insurance wouldn't.
I had it starting in April, and I'm done after five months, at last for now.
Very effective, no side effects.
But it works diffently for everyone.
For me, after a week my white blood cell dropped from 146,000 to 1,300.
Best of wishes to you and your recovery!
It is quite a common combination. If you check the previous post you should be able to find a lot of information.
Hi there and welcome to the V&O club. I am about 4 months in out of 12 and pretty much agree with all that the others have said.
I was sick on the initial trial dose of Obintuzamab but since then have taken an anti sickness each time and I was fine. For the first few times they also gave me anti-histamine which made me a bit tired but I don't have that anymore.
The Venetoclax ramp up all went fine also and agree with being strict on the water.
To be honest I find the biggest challenge is to be feeling so well (I am so very grateful for this) and normal but to know that I am highly neutropenic and have such low immunity, therefore I am still pretty much isolating since before Covid and it does get a bit much sometimes.
I have recently had some stomach injections (G-CSF) to help with the low neutrophils so have had to go in for blood tests more often than envisaged.
I lead a very busy (home-based) life and I sort of look forward to my hospital visits as a sort of me-time when I get a chance to sit down and recharge! Does anyone else feel this way? Could be because these are my only outings!!
Wishing you lots of success on your journey and don't forget to enjoy your life while you are on it, in addition to looking forward to after it!!
Yes I agree with you on the me time I am self employed & work with my wife from home, so getting out is still a novelty. I don't take a phone & read for what is usually most of the day. as the Obinut infusions are a walk in the park now, it's not a painful experience & I like people watching.
I am so grateful for your reply, I now feel much better about this treatment plan.Thanks so much x
First time Obinutuzumab I had a reaction but then there was no problem anymore very effective treatment uMRD after 6 months
Hi, I am in US. I had a VIPOR trial with six cycles of: Venetoclax, Ibrutinib, Prednisone and Obintuzimab for my relapsed (6 months after CAR T) Follicular NH L that was a small relapse in two places one near my spine and one near my aorta. my Lymphoma did transform from Follicular to a larger and more aggressive B cell. So had the VIPOR in spring of 2020 at National Institutes of Health. I am now in a 14 month Complete Remission. I agree with all that has been said before. Be sure to drink PLENTY of water to hydrate the kidneys. I did have some diarrhea problems with it. But I had the Ibrutinib. Prednisone, and Revmilid (lenolidimide) to also contend with and you wont have those three. So that is great that you only have two medications. It was a lot of pills to take. For me, the Obintuzimab was given IV and I did get nauseated but when I got the IVs, I asked for my Zofran to be given IV instead of oral. And that works best for me to avoid nausea. I also did develop a very mild case of psoriasis in a small place near my scalp. Doc said it was due to immune system. Best wishes to you for a Durable CR.
I agree with the trend of comments on here. Apart from day one & my blood pressure dropping, the rest of the infusions have been absolutely fine. My white blood count went down to 3.2 from 222k in a week. all nodes disappeared as well & Venetoclax has given no problems. The water intake is key as stressed here.
That's so great to hear because my lymph nodes are massive in my neck and quite painful.
The first few obinutuzumab infusion were bumpy, but manageable. Hopefully, you've gotten all your vaccinations because obinutuzumab will suppress your immune system. This means you will need to be very careful while on treatment AND for at least a year afterward.
I am starting Obinotuzimab in 2 days.
Please stay in touch and let me know how you feel🙏
I wrote about my experiences during the ramp up and beyond. Lookup my posts if you want to see how it played out. By the way at cycle 6 I am UMRD.
Hi ChuckyB,
I was treated with this therapy almost two years ago. Although my experience is that the adverse conditions were less than what I expected, please understand that we are individuals that will have individual responses. Some may not tolerate a drug that another hardly notices.
I had a brief infusion reaction "riggers"on the second round that lasted about 10 minutes. The nurses lowered the rate, and I finished the session. A steroid is usually administered prior to the infusions to control inflammation which will affect your sleep for about 16 hours afterward. You can also expect diarrhea over the 6 month infusion period and more so on the days you receive the obinutuzumab (Know where the restrooms are). You will be under monitored supervision during infusion , so be assertive in asking the nurse about anything you sense that is unusual.
I recommend having something to do during each session such as reading material, a laptop, or music - generally 5 - 6 hours. I found the greatest benefit to prevent or lessen adverse symptoms is to adequately hydrate. Start a hydration practice as soon as you can "like right now" - drink 4 to 6 of the 16 ounce bottles of water between 6:00 AM and 9:00 PM. I found this easier to do if I replaced all other daily drinks with the water, this included the morning coffee and daily soda etc.. Once you get past the 4th infusion, it will become more a routine.
When you start venetoclax, you may experience some joint pain with muscle cramps and more so at night when trying to sleep, itching, rashes, and a dry cough, however, mine were mild rather than debilitating. Also expect the diarrhea to continue. To control nausea I found it best to take venetoclax after dinner around 7:30 and go to bed between 9:30 - 10:30. Again, the adequate hydration is the greatest benefit.
My experience overall was and still is that the CLL symptom improvement outweighed the aggravation experiences from drug side affects, and the year of treatment went by fast.
Feel free to message me during the treatment if you would like my opinion on something. I am willing to share my experience while not trying to play doctor.
Please return and post your experiences here, as they can help others form a more informed perspective.
Hope the Best of the Best for You,
JM
JM.Thank you so much for getting back to me, and I really appreciate the detail you have given about your own experience..
I am also very thankful for your very kind offer to message you throughout my treatment if I need some advise.
I guess hydration is the major thing here with these drugs as the majority of people who have been kind enough to reply have all mentioned it.
Good luck and take care👍
Chucky B
I started this plan in July. The OB ramp up was 100ml on the first day but I had an adverse reaction after just 19ml and then a trip to A&E. What I would say is don't hesitate for a second if you don't feel right. Call a nurse immediately as things can escalate fast (fortunately not too often). My reaction was difficulty breathing, rapidly falling heart rate and blood pressure. Thank goodness I was in the hospital with a crash team nearby. Even if this happens there are alternatives like slower infusion or (in my case) a switch to Rituximab, which has been absolutely fine and highly effective (After just 3 infusions).
Thank you so much Chucky I started this regime on Monday and this thread has been really helpful. Hope your treatment is progressing well too !
Obinutuzumab, Venetoclax and Vaccines
venetoclax and obinutuzumab treatment for cll
Ibrutinib and Obinutuzumab with Venetoclax
Ibrutinib or venetoclax-obinutuzumab
Obinutuzumab and Venetoclax 
