Hi All, I have been told by my Haematologist, that she is going to start my CLL treatment in January. She is talking about putting me on, 'Veneloclax' (Pill) and an 'Obintuzumab' drip. on a five week cycle. (I may have misspelled the names)
Has anyone, had any personal experiencing or knowledge regarding this particular treatment, and what I am likely to expect, in terms of side effects etc.
All the best all. Ton
I started the very same treatment in October and so far have had no real side effects I know this isn't the same for everyone my experience so far is a pretty good one came off much better than I expected hope this helps
Hi Vindicatrix,
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We have 473 past postings discussing venetoclax / Venclexta and obinutuzumab / Gazyva see them here: healthunlocked.com/cllsuppo...
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It's one of the most commonly used treatments today. The first 5 to 10 weeks can be intense.
See venclexta.com/previously-un...
venclexta.com/content/dam/v...
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Len
It's a 4 week cycle.
First cycle 4 infusions of Obinutuzumab. Day 1 and 2 of week 1, then day 1 of week 2 and 3 (day 8 and 15 of cycle 1). Day 1 and 2 of week 1 is actually 1 dose split 10%/90% so it starts slowly.
Ramp-up of Venetoclax starts at day 1 of week 3 of cycle 1 (day 22) and takes 5 weeks. The first week starts on 20mg a day
Cycle 2, IV of Obin on day 1 and 50mg a day of Ven in week 1, 100mg/day week 2, 200mg/day week 3 and full dose 400/day week 4. Again this brings you up to full dose slowly.
Cycles 3-6, IV of Obin on day 1, 28 days of 400mg Ven.
Cycles 7-12, 400mg Ven daily.
Total is 48 weeks, about 11 months.
Not sure what you get from Scottish NHS, England I was given a booklet from Abbvie (makers of Ven) that explains it and a card to tick off daily,
If you are "high risk" TLS I recommend a port, PICC line for at least first 9 weeks. About 30 blood tests and 5 IV. About 16 blood tests and still 5 IV if low risk TLS.
Scottish NHS research have a protocol for blood draws from cannula but it's not common practice and you would have to ask. If you are high risk many of the blood tests can be a blood draw.
I was treated with this combination successfully, like Newdawn. Finished treatment after 2 years in Sept 2021 and remain well. Some side effects on treatment but no lasting damage so WELL worth it!
Thanks so much for that, it really helps. Regards Ron
Macmillan publish as superb booklet on CLL treatment with data sheets on Obinutuzumab, trade name in the UK Gazyvaro. (it is a monoclonal antibody which is why its name ends in "ab")
That was interesting and helpful, thanks so much. Ron
All the above is accurate information. I finished the infusion portion 11/2/23 and I am now on the oral. I see the Dr 1/4/24 and will get blood work to see how I am doing. Intense in the beginning because of the appointments and blood tests. A few side affects but I feel great. I have been remarking to my family how I actually didn’t realize how sluggish I was until now when I am feeling quite energetic and stronger. I am 73. Best of luck to you. It’s a good treatment in my opinion. Any side effects for me were tolerable. It’s good to get info so you know what to expect then it is less scary. My best, Wendy
Thanks Wendy, your words were powerful and relevant to me and I feel better after reading them. All the very best for the future. Ron
I’ve just finished my course and the whole cycle was very good! You are so looked after from start to finish and they are wonderful!
You have to be assessed first so that you know if you are high risk or low risk for toxic lysis syndrome - Ie whether you have a high bulk of lymph nodes etc. there’s no need to worry if you are high risk as it allows them to plan your treatment more closely.
So I hope I am right in suggesting that you need to have a Ct scan or other way of assessing nodes. prior to treatment.
I felt better from my spleen shrinking within weeks. I felt weak at the beginning and needed someone to take me to and from the hospital for a couple of weeks.
good luck! It is a fantastic treatment!
Thank's Pearlpink, your words are a tonic to me, and so supportive and full of hope. The recent scan has been done, I have a bone marrow biopsy on Friday.
My haematologist called today, and will be attending the MDT meeting next week to finesse my treatment.
Had same treatment September 2020 - October 2021. Two plus years post-treatment and back to watch and wait, seeing my specialist every 6 months, and I’m doing great!
I'm so pleased to hear that, and I wish you well for the future.
Thanks so much for the info, it helps me so much to hear others experiences.
We are so lucky to have this website and forum to turn to in our times of need.
All the very best. Ron
At age 68, I just start O & V in November after being on W&W for 5 years.Different countries use different protocols and have different cycles for their meds and blood-work to monitor the effects. Not all drugs are approved in all countries. General chemotherapy medications have fallen out of favour and are replaced by targeted medications specific to CLL treatment. We are a very fortunate group. New targeted therapies are announced every few months.
For me in Canada, After the initial ramp-up of Obin (a monoclonal antibody) in November I will have an infusion of that once a month for 5 additional months then it is stopped.
The Venetoclax (a BCL2 inhibitor) I will take daily, starting at 50mg increasing every week to 400mg at week 4, then 400mg daily for 12 months then it is stopped. It is expected that this "time limited" therapy will put me in remission. [minimal residual disease (MRD)]
Initial side effects, for me, have been minimal. I am drinking the recommended 1.7 litres of water daily to flush out the destroyed cells.
Some protocols use a different approach starting patients on a BTK Inhibitor which may be taken for a longer period.
Hope this information is helpful.
Wishing you all the best.
Richard
I cannot thank you enough for that detailed explanation of what you are going through in Canada Richard. (I lived there for eight years) and I am so glad that they are treating CLL'ers so well.
it gives me great hope, and a certain reassurance. For someone approaching treatment apprehensively, Posts like yours are 'Gold dust'.
Thanks again and I fervently hope that your treatment continues to prosper. Ron
Hi Vindicatrix,
I started this same treatment on October 1st with the same schedule as others have already outlined. During my first infusion, I did have a reaction to the Obinutuzumab but that is typical. Specifically, I started to get very warm in the face, turned very red, had nausea that caused me to vomit and then became very cold and had the chills. My vital signs were never a concern. The nurses were all over it and gave me medications to counter the effects. I was back on track within an hour and completed the infusion. I have not had any problems with the infusions after that. In only two months my spleen has drastically reduced in size and all my noticeable lymph nodes are gone. I have not had any noticeable side effects from either the V or O and I have now completed the ramp up and taking the full doze of V. The first two months are very time consuming with all the labs, doctor visits, infusions, etc. I am glad that is over with!! Good luck to you!!!
True confessions. I also had a infusion related reaction (IRR) on first 100mg dose of Obin. Within a few minutes my head felt like I had stuck it in an open oven with hot air wafting past and I felt a bit dizzy. IV was stopped, vitals checked and a blood culture done. Had a shot via the IV line and restarted at half rate. The IV lasted 8 hours, finished a half past midnight. I ran a temperature of 38°/104°F until 2 am, when the nurse told me I was just fine.
Day 2 900mg went just fine on normal rate sheet (after a severe IRR they use a slower initial rate). By cycle 3, 5th IV, I was having "off label" 90 minute "short duration infusions" / "rapid rate" that are approved for Follicular Lymphoma but not CLL.
Thanks for the info Skyshark, you seem to have had some hiccups, but it looks like you persevered and I do hope that things are now settling down.
All the wonderful replies I have had relating to this treatment, have prepared and reassured me against the 'Unknown', and I am in a better place as a result.
Thanks again to all. Ron.
I started my o infusions Dec 7th last year, finished my venetoclax last month, no real side effects, I was back working full time after 5 weeks, my hospital staff were fantastic and really made it quite straightforward, I can’t praise them enough.
Good luck 🤞
Thanks so much for that mfc86, I am somewhat reassured and more positive, as a result of all the supportive 'Post's I have had on this subject. (Including yours)
Thanks again.Ron
My Husband is 90 years old and has been on both since August. Not one problem. He is doing great! Hope this is encouraging for you.
That's amazing and fill's me full of admiration, and hope.
Thanks so much, Ron.
I was treated with O+V+Ibrutinib as part of a clinical trial. Had no major side effects. Best of all ended up uMRD! Treatment lasted 15 months but was definitely worth it. I think you are on the right track. Good luck!
Hi Ton.
I’m in exactly the same position as you.
Starting treatment (NHS Wales) in January.
I’ll find out which treatment I’m going to on, on the 21st when I sign the consent. Though it looks like it’ll be V&O as well.
Already had CT scan and had heart checked with ultrasound (the good news is I’ve definitely got a heart 
Good luck in January
Andy
All the best, Tony, I would be interested to see how you get on.
I'm glad you have got a heart, handy things to have😀 I have not had mine checked out yet, but perhaps that will come.
Thanks again for the info. Ron
When is it time?
ibrutinib it is expensive?
