Log in
CLL Support Association
12,333 members18,837 posts

Ibrutinib /Venetoclax Follow up

Hi my fellow CLLrs!! Well.. I just wanted to follow up with everyone and give those who are thinking about starting this trial an update on my experience so far. I started Ibrutinib back in October 2017 and started Venetoclax in January 2018. There was a ramp up period on the Venetoclax for 5 weeks. Started at 50mg to 400mg. I did well on the ramp up and overall I have experienced little side effects. Some muscle and joint pain. My lymph nodes are back to normal.. My numbers are all within normal range and I have more energy than ever. I was getting my labs done once a week and now its once a month. I did get high blood pressure from Ibrutinib so now I'm taking high blood pressure medicine but... I can't complain. My Oncologist is very pleased with my results. Next month I will have another CT Scan and BMB done so we will see how well the treatment has worked so far. Only time will tell. I really believe this clinical trial will help many others and I'm glad I made the decision. I will follow up with everyone after my next BMB. I hope everyone is doing well.. Stay positive and stay strong!

BC

38 Replies
oldestnewest

Great post, BC!! I’m really happy for you 😊

4 likes
Reply

Thanks. 😁

1 like
Reply

Great to hear your good report!

2 likes
Reply

😁

1 like
Reply

Great!!

Reply

Hi Hoffy.. how did your last BMB go?

Reply

Thanks for asking !

I am MRD NEGATIVE!! This is very good news. I posted on martini post but I am going to do another post soon.

I get randomized early next month for either imbruvica or a placebo. I will be stopping Venetoclax per the protocol since I am MRD negative.

My side effects have not been too bad. Mostly finger tip pain and some fatigue.

You will probably get to MRD negative as well!!

Be well,

Hoffy

9 likes
Reply

I know that mdr means minimal residual disease, but what is the significance of it?? Does it mean a cure?remission? Thanks. Lydia

2 likes
Reply

It means they cannot see the CLL sells down to a sensitivity of one in 10,000 cells . It doesn’t mean it’s not there but it is below the levels they can measure.

. It doesn’t mean it’s not there but it is below the levels they can measure.

Overall this is very good news because it means it’s mostly cleared out and I can hopefully go off drugs for a while and then if it comes back I can take the drugs .

I will be taking either imbruvica or a placebo as part of the clinical trial protocol .

I hope this helps.

Hoffy

6 likes
Reply

Thank you Hoffy

1 like
Reply

OMG - Congratulations Hoffy!!! I've read your bio on CLL Society and have been reading your posts, including the one where you had a LDH count of 1600 prior to treatment. To think you were only diagnosed in January 2016, went through the experience of having your CLL increase rapidly after 6 months...and here you are - MRD NEGATIVE!! So happy for you and so encouraging for the future of CLL treatments.

5 likes
Reply

Thanks!!!

Reply

Awesome news Hoffy!!!

1 like
Reply

Awesome news~ I am so happy for you!!! Thank you for posting the beautiful picture, too!! :)

2 likes
Reply

Thank you. That's a picture from Texas 🇺🇸

1 like
Reply

Hi BC

I'm new to CLL and its posts like this that keep me positive that there so much good treatment out there.

Thank you for your update.

7 likes
Reply

Hi Eric

We are so lucky these treatments are available.

Best Wishes

4 likes
Reply

I feel the same way👍

2 likes
Reply

BC, disease going away with hardly no side effects. That is what we are all hoping for with the new treatments. Wonderful to hear about your progress. May I ask where you participated in the trial at? STAY STRONG!!! J.R.

3 likes
Reply

Will these trials always be there or do they eventually end

Reply

Hi Sushi

Particular trials stop taking new patients when they have enough enrolled. They end for the enrolled patients after a set time (eg 27 months) but there are often follow up trials to keep the existing patients going and keep getting their data.

New trials pop up regularly but some are much better than others. Some also suit some patients much more than others.

I like the phase 2 trials - you know the treatment you're getting whereas phase 3 trials you might just get the currently available treatment instead of the new one being tested.

Graham

2 likes
Reply

The trials are there till they are filled. But trials are going on all the time, especially in our type of disease. There has been an explosion of treatments and many more to come till one day it all stops. Because a cure has been FOUND. It is coming, keep the faith. STAY STRONG. J.R.

4 likes
Reply

☺☺☺

Reply

Trials take place as part of the development of the drug so once it gets to a certain stage they end. Trials can also take place for other reasons such as testing out a combination and again they have a defined period and number of patients they will be open fior.

As new drugs come along that look to be good there will be more trials.

There are trials at different stages of the development as well, so for example ‘first in human’ trials are self explanatory, having tested in vitro (in petridishes in lab) successfully there will be small tests to see if they even work on humans. Then other trials will test the effectiveness and the side effects.

Hoffy (and I and others) are on different trials, both of which are testing the effectiveness of Ibrutinib and Venetoclax in combination

Hoffy, BMB MRD -ve, that’s awesome.

Hope that hells, best, rob

6 likes
Reply

Thank you oleboyredw so much for explaining it to me step by step now i have a better understanding. 👍👍

Reply

Hi JR

I'm going to MD Anderson in Houston Texas.

Reply

So pleased things are going so well for you. I have just started Ibrutinib and retuximab arm of FLAIR first infusion yesterday went well. Hearing from other trial members is very supportive and reassuring. Look forward to hearing how things keep going for you.

Good luck

Ann

2 likes
Reply

Hi Ann

Good luck on your trial. I know you will do well.

1 like
Reply

Thank you very much appreciated.

Ann

2 likes
Reply

I have read somewhere that once you are MDR- the drugs having nothing to do and start to 'find things to do' . Is there any sign of you coming off the drugs?

Reply

They will stop treatment only after you are MRD Negative or when the drugs stop working.

Reply

So glad all is going well for you.

Best of luck from another Texan

1 like
Reply

Thanks Mize.. We are all in this together!

Reply

That is such great news. I was told I’m too old for the trial. Maybe when Venetoclax is approved by the FDA I can get it.

1 like
Reply

I'm sure Venetoclax will eventually be FDA approved.

1 like
Reply

Best of luck with this treatment. From what I've read it looks promising. I've had CLL since 2013. Nov 2016 found out it mutated to CLL 17P deletion. Started Ibrutinib January 2017 had response on the Ibrutininb then was sent to UW Madison for a Tx plan consult since I'm 51yrs old. They are recommending a Stem Cell Transplant (SCT) to knock out the CLL. Started on Venetoclax/Venclexta Beginning of February. Gone thru starter pack and now on the recommended 400 mg daily dose. Waiting to see if one of my sons is a donor match for the SCT since my brother wasn't a match.

Reply

Best of luck on your treatment.

Reply

As Venetoclax should knock out the CLL, why the stem cell treatment?

Reply

You may also like...