Just got off Venetoclax.. followed the Murano Trial. Now three weeks after being off medicine neck and armpits are a little sore. Don’t notice any lymph nodes yet. But a little paranoid. Have people found symptoms to come back this quickly?
Thanks.
Mav
My nodes came back while on was on Venetoclax although I was on a half dose. Bloods were all good but I had a shocking cough with phlegm for 6 months. Had a mass of nodes in my chest and top of my stomach. Changed to Acalabrutinib and within days my cough went and I was able to eat regular meals again. Also had nodes in my groin which for me has been a sign of the CLL returning.
So glad you found something that works. Had heart issues on ibrutinib and not sure if the dr wants to use anything within the same family of medicine.
I also had Ibrutinib 5 years back for a year. I had to come off of it as my bloods were not good and then recommenced it for 8 days but once again could not tolerate it. I was wondering if the Acalabrutinib would have the same effect but so far so good.
Where you on rituximab and venetoclax ? Is that the murano trial arm ?
Yes it was
Did you reach Mrd u ? Have you discussed with your cll specialist. ? How long have you been off venetoclax?
Hoping all is well. What are your markers? I have been on Venetoclax for 3 years with no issues. Have been MRDU for over a year. My Specialist has believed it best that I continue witht he drug. I am 17p del , Tp 53 mutated, and 71. I know that some have seen CLL return quickly once the drug is stopped. My fear is that it will not work if I need to return to it. I was on Imbruvica for 2.5 years with issues that eventually made me switch shortly after Venclexta was asailable in the US. I have no problem staying on it.
Hmm. Are you MRD U in the bone marrow. ? Are you on the Full dose of venetoclax ? 400mg? Good to see that your have had minimal issues I thought it wasn’t good to be on venetoclax after 2 years as it really isn’t effective after that ?
I
I am on the full dose. I have never read that Venclexta lost effectiveness. Unless enrolled in a trial, I have never heard a limit on the time period for the drug. Not everyone reaches MRDU/neg during trials, and many do continue thereafter. I realize that most would prefer to be able to stop meds, but that is not feasible for all. There are many factors that go into the decision of if or when to stop medication. I have never had a bone marrow biopsy. In the US, it is no longer automatic unless you are in a trial. I began treatment a month after Imbruvica became available for treatment naive patients with 17p del. Shortly after Venclexta became available for preciously treated 17p del patients, my Specialist switched me to it. I have been very lucky with my timing!
Be guided by your specialist on this Mcpill. We have a number of members on long term mono Venetoclax therapy who are not part of a trial. Sometimes it’s dictated by higher risk bio markers. As long as you’re being carefully monitored, you tolerate it well and it’s funded, it’s clear this is the treatment your specialist feels is right for you at the moment.
Newdawn
Thanks, Newdawn. I agree. At 71, with my markers, I am happy to take it as long as it works. It does mean I will continue to work for my excellent health insurance, but I like my job, and am happy to do so. As my current specialist has retired, I am switching to a new specialist at another facility. He too is highly regarded and I will be interested to hear his thoughts on my health, and meds. Best to you!
Susan
Relapsed after 40 months in remission
People's lived experience of complete remission after long illness?
Molecular remission after 6 rounds of FCR
REMISSION !!!!!!!
Venetoclax
