I am new here and about to start venetoclax/rituximab treatment.

[RamsesII]

CLL diagnosed in 2012. No treatment for CLL so far other than rituximab to treat haemolytic anemia.

My question is: Having just completed 4 weekly doses of Rituximab and achieved excellent recovery from haemolytic anemia, can I start immediately the venetoclax/rituximab treatment or do I have to wait for some time and if yes, for how long?

Any views are extremely welcome. Thank you.

[lankisterguy Volunteer]

Hi Ramsesll,-

That would be a question for your doctor (knowing your detailed medical history is critical).

-

If there are no issues with your anemia it would seem convenient to make certain that your nodes are small/normal and your ALC is under 25k to keep you in the low risk group so you have an easier ramp up process.

-

see venclextahcp.com/cll/dosing...

-

Some of the side effects of starting Venetoclax can depress your Neutrophils or other blood components, so having a CLL expert experienced with Venetoclax to guide the decision is important.

-

Len

Venetoclax ramp up risk assessment

[Psmithuk in reply to lankisterguy]

I’ve just started the third week of full dose Venetoclax, but the Obinutuzumab has been paused for several weeks after the first cycle, waiting for my platelets to go up. I think the other results (including lymphs) are good, although my Hb is only wandering around 10+. It’s just wait and see from one week/blood test to the next.Cx

[RamsesII in reply to Psmithuk]

I wish you a successful completion of your treatment. All the very best!

[RamsesII in reply to lankisterguy]

Thanks for the swift response. I found your mention of ALC particularly helpful. All the very best!

[Fran57]

Hello and welcome to this brilliant site. There are so many knowledgeable and supportive people here.My husband will be starting Venetoclax and Rituximab in a couple of weeks now. ( He had FCR in 2015).

He was told he will start with the Venetoclax ramp up for four weeks and then have Rituximab every month for 6 months. The Venetoclax will be for two years.

I suppose it can be done in different ways, each person is different.

It’s interesting that your rituximab was weekly. I hope it was okay for you.

Do keep us updated on how it’s going.

Stay safe,

Fran 😉

[RamsesII in reply to Fran57]

Thank you for your response. I need to clarify that my 4 weekly doses of Rituximab were not part of the VR treatment. They were only meant to fight an autoimmune hemolytic anemia I suffered from, and they did this very well. My VR treatment will be exactly as you describe it.I wish you and your husband all the very best!

[Fran57 in reply to RamsesII]

Thanks; Good luck 👍🏻Fran 😉

[larrymarion]

Ramsesll, as you probably are already aware, lankisterguy is an expert. i totally agree with everything he said, based on my experiences with V and with R.

I had them separately several years apart. in fact, i had R before V was even approved by the FDA. Each of them proved to have mild/minimal/no physical side effects for me.

Again, to repeat what lankisterguy said, having a CLL expert on your team to monitor all of this is crucial. V can be a nasty drug if it isn't done right, which is why the ramp up is critical.

[RamsesII in reply to larrymarion]

Thank you very much for your response. Please rest assured that I do have CLL experts on my side and follow punctually their advice. My question was meant to find out whether any fellow members have had for any reason the experience of being treated with R immediately before the V ramp up and any lessons to be learnt from that.All the very best to you!

[larrymarion in reply to RamsesII]

I had a lot of R on and off for nine years before V, so i don't have that specific timing you're looking for. sorry i didn't read your query more closely. best of luck--i'm sure you'll find V to be a miracle drug--it gets rid of CLL quickly and the side effect profile is minimal.

[t2aa]

I started ramping up on Venetoclax after 4 weeks of Rituximab.. I ramped up to 400 mg but had so much trouble with nausea, they cut me back to 300 where I stayed for the rest of the year long treatment. I still achieved undetectable by the 6 th month and confirmed again at the end of the year long protocol. I feel so lucky to have been able to get this treatment!I hope your results are as good as mine were, but maybe without all the nausea!

Tips: drink lots of water and take the Venetoclax at night.

[RamsesII in reply to t2aa]

Thank you very much for sharing your experience, which I find very encouraging. All the very best to you!

[StBon]

Did Rituximab alone monthly for 12 months back 6 years ago. I worked through it with a couple days off due to 'mild flu-like effects' immediately after each infusion. It gave me nearly 2 additional years of decent blood work and return to 'normal' 40-hours a week of volunteer work. Hopefully you will have equally good results.

[RamsesII in reply to StBon]

Thank you very much for sharing your experience, which I found very useful. All the very best to you!