Update on Ven & Obin protocol

[SunnyCA]

I’m all the way through the ramp up on Venetaclax - just started 400 mg and have 2-3 more Obin infusions. Here is what I’ve found:

1. Insist on anti nausea meds with Obin for premeds. Once I did that the single episode of throwing up with the first infusion was resolved. Also, I requested a vein ultrasound machine with each infusion because my veins are tired after 15 years of CLL. It helps a lot with getting the IV in the first time and less pokes. I had that request put in my chart.

2. Taking Ven in the morning with a proper breakfast that includes protein and an 8 oz glass of water helped me a lot with any low grade nausea. Drinking 2 liters of water throughout the day - super important.

3. Tiredness I found was primarily due to the high dose of Benadryl, anti nausea and maybe the steroids they give with the Obin. Once I was off the weekly and moved to monthly Obin infusions energy improved.

Overall I have found this protocol side effect free compared to ibrutinib where I had a lot of joint pain, muscle cramping, skin rashes etc especially the first couple years. Most importantly my numbers are all good - I had one blip with my platelets but they have popped back up. So far so good.

[Zia2]

Good to know! Thanks for the advice 😊

[NessaLou]

Sounds like you've got it sorted. Hope the smooth path continues. I am 3 months in on a similar med protocol in UK. I had allergic reactions to the first small dose of Obinotuzumab and have had less severe delayed reactions to each infusion since which leaves me with a swollen and red face for about 24 hours. I was told last week that the Venetoclax at 400mg had given me severe neutropaenia so I have had injections in my tummy to kick start my bone marrow. I am supposed to be returning to work in a secondary school after Easter break. I am not convinced this is going to happen!!

Have a great Easter break. Take care

[SunnyCA in reply to NessaLou]

My very first Obin infusion I got super flushed and then vomited in short order. But not since I did the the composine (anti- nausea) as part of premeds. I have been lucky with my numbers so far no neutropenia. Wishing you the best.

[Bemersyde]

thanks SunnyCA, being promised/threatened starting O+V in the near future, I’ve been collecting information as to how to best get through the process. Your insightful input helps me and all those in my situation. Thanks

[angelikab]

I do hope your treatment goes well. I did fine on the Obin but the V when I went from 100 to 200 mg caused my legs to swell so much I could barely walk. So I’ve been on 100 mg for months and I seem to be doing well. No more fluid build up in my lungs. . The nausea I can control with Zofran.

I had colon cancer in the summer and beat it. But chemo therapy is so awful and the side effects are long lasting that these meds for the CLL are nothing in comparison and we all get through this regimen somehow . They are miracle drugs.

Oh and in order to protect my veins I had a port put in for the chemo which was great. Maybe you can have one put in? Ports nowadays are small and really no bother in one’s daily life. But all that was after the Obin infusions which were quite easy for me.

Wishing you well.

[SunnyCA in reply to angelikab]

Gosh, you’ve had a lot. So glad the colon cancer is resolved. Yes the ports do seem easy but I decided to just get through this with regular IVs. Mainly because the Obin does not damage the veins per se. Best wishes.

[angelikab in reply to SunnyCA]

Thank you so much for your kind comment. I just thought whoever had written their comment was having trouble with their veins. So a port would help. I’m sure you will get through it without a port. I did too. It was just needed for the chemo for the colon cancer. 😃

[Courage_Love_Legacy]

I've just had my first cycle of Obi and pretty ok during the infusions; now 3 days post and I am absolutely knackered. No energy at all and stuck in bed... thinking it might be a bit to do with the steroids... hoping, like you, my energy returns once I'm at the monthly infusions rather than weekly... hard to manage this level of depletion with 3 young kids!

[SunnyCA in reply to Courage_Love_Legacy]

The tiredness is real for sure. I think the body has to adjust and it takes a bit for that to happen - also to get all that Benadryl and steroids out of our system doesn’t happen over night. Plus you have 3 little ones! All I can say is I’m confident the low energy is temporary. For example today I felt more myself energy wise. I have two more Obin infusions after this Monday’s. Thank goodness! Keep well.

[SofiaDeo in reply to Courage_Love_Legacy]

Or some of it could be because you are killing CLL cells, metabolizing, then excreting them, which takes a lot of energy. I know people with nausea are disinclined to eat or drink much, but IMO and IME patients really need extra nutrition early into induction.

Our drugs aren't the same as, say, a drug to increase our potassium or stop uric acid crystals from forming. Those don't involve a lot of energy demands to be effective. It's more along the lines of when we have an infection. The drugs help us attack an invader, but all those "bad" cells need to be metabolized & excreted. So our systems are working hard. Some of us feel very little but not everyone does.

After induction, a number of people have more energy. I'm just happy our targeted agents generally don't have the same side effect profiles as standard chemotherapy. Talk about exhaustion.

Hang in there, hopefully this will pass quickly!

[SunnyCA in reply to SofiaDeo]

That makes total sense. Yes totally different from chemo which I have had also. This is a game changer for sure.