I saw my oncologist today and he feels my CLL has started to progress. After being on IB for 3.5 yrs and Calquence for 6 months it’s time to say goodbye to my old BTK meds.
He wants to do a CT scan and bone biopsy to be 100% sure the disease has progressed.
If it has - has given me two options:
Venetoclax + Rituximab
OR
LOXO 305 trial .
Any thoughts folks? Anybody on one of these 2nd line treatments?
Thanks Steve
Hi Steve,Nobody has replied as of yet. So I thought I would say howdy. I am in watch and wait still..(4yr). So no experience on which treatment is the best out of the two. But, I did want to say that it is sure good to have a couple more treatment options! That may at the very least keep the beast behind bars for years.
All the best in your decision making process.
Merry Christmas!
I am in the trial comparing Pitrobrutinib against Ibrutinib. I am taking Pitrobrutinib.
Which arm of the LOXO 305 trial are you considering?
I am still taking Calquence but my doctor is going to try to get me into one of the two arms.
Hi Steve, I am in the same predicament as you. At my last blood work in October I was told that my Ibrutinib has started to lose the battle with my CLL cells. I have been on Ibrutinib one month shy of 5 years.
My Onco put in a referral for this Loxo-305 trial at Princess Margaret and I had a virtual consultation just last week. I decided to go for the trial with the thought of keeping the Venetoclax + Rituximab in my back pocket for a later date.
I was accepted and begin the screening this week, blood work, ecg, cat scan, mri and the dreaded bone marrow biopsy and aspiration.
It's a randomized trial so as of now I don't know which arm I am going to be on but was assured that if I am not on the Pirtobrutinib arm and the other doesn't workout they will switch me to the Pirtobrutinib arm.
Hope for the best for you,
Jack
That’s great to hear that you have been accepted into the trial Jack. I am going for that dreaded bone biopsy in early Jan and hopefully will start the trial shortly afterwards.
It’s good to know that there are a few more lines of treatment available to us.
Have a great holiday !
Steve
I worried about the BMB but it turned out to be not painful.
Good to know! That’s why I love this forum - everyone is so helpful.
My husband just had his 3rd bone biopsie since 2014 and felt only the needle to numb! Somehow they now can numb the bone.....this was done in US By the VA!!Terri
My husband was diagnosed 10 years ago and was in watch and wait for about a year, and then has chemotherapy. He was only in remission for about 3 months and relapsed. Ibrutinib has just been FDA approved and he was on that treatment for about 3 years before the CLL began progressing again. His next treatment was Venetoclax. That treatment was also effective for 3 years. In April of this year the CLL once again began progressing. His oncologist wanted to get him on Pirtobrutinib which she hoped would be FDA approved by summer. After a very rough 5 1/2 months, CLL progressing quickly, hospitalized once, ER once, whole blood and platelet transfusions once sometimes twice weekly, he received a compassionate use authorization in September. He is now doing quite well. If this pattern continues, our worry is what if anything will be available in 3 more years?
Hi Steve. I have been on both venetoclax with ibrutinib and LOXO. They both worked for me about 19 cycles or 1.5 years. LOXO is so targeted that I had no side effects. I didn’t even know it was on board. . I think you will be happy with either treatment but I’m not sure they know the optimum combination of more than one treatment drug at this point. I’d lean heavily on my doctor to help with the decision. Good luck. Tony.
Hi Tony, how are you doing now? Are you also 17p deletion?
I’m 11q deleted and unmutated. I’ve had a pretty rough patch the past year and especially the last 6 months. I tried a study of LP-168 that binds both covalently and non covalently in March but I continued to progress so I switched to another study of MS-533 that works downstream from BTKs. Both of those studies were dose escalation and didn’t really do much until the maximum doses were reached. I’ve needed blood and platelet transfusions to maintain counts but finally I seem to be responding. CLL is a journey with plenty of ups and downs for many of us. We have to be thankful that the research is continuing and we haven’t yet run out of options. Stay strong and vigilant. Tony
Hi Steve,
Maybe one more option to consider: venetoclax + obinutuzumab? (Or is that not an option in Canada?) At the time I started treatment in 2018 that combo wasn't officially approved for CLL in the US, but I guess my oncologist was able to prescribe it off-label. Despite some infusion reactions from obinutuzumab and a couple bouts of febrile neutropenia early on, I had a great outcome with V + O. But, of course, we're all different. I'm 17p– but reached uMRD 4 months after completing the venetoclax ramp up and continued on venetoclax for 2 yrs without apparent side effects from the drug. Have been uMRD for almost 4 yrs, though I expect to relapse sooner or later. Fortunately, there are other options (maybe even the same treatment) when that happens. Wishing you the best!
That’s awesome. My onc wants me to get on the LOXO 305 and then potentially have Venetoclax + Rituximab as a 3rd line treatment.
He mentioned stem-cell transplant as a Hail Mary eventually but I told him I’m not interested in that procedure as I’m almost 62
I wouldn't be interested in a stem-cell transplant, either. With so many established and promising treatment options for CLL, including CAR-T cell therapy, I'd consider these before opting for a stem-cell transplant.
Hi Steve
It’s a really difficult decision you have to make.
What is it and what’s the best for you. And how can you know. You always wants what’s best.
I write because my first treatment, first line in Denmark, where I live, when diagnosed in 2018 was
Bendamustin(chemo) and Retuximab.
I got a very serious lung infection, pneumocystis
But that was the result of Bendamustin
and NOT Retuximab, I was told by my oncologist.
I had three rounds, and they had to stop the treatment. Because of my serious lung infection.
No side effects whatsoever from Retuximab.
Then I had 3 years without treatment. Now for the last 18 months I’ve been on Venetoclax 100 mg. I’m having that for another 6 months. Only Venetoclax nothing else.
I can tell venetoclax works very well for me, and no side effect from that either.
Hope the very best for you
Merry Xmas and a healthy New Year
Hi Steve I was one of the 25 on Loxo trial-dose escalation phase 1Aat MSK with Dr Mato in June 2019 I have had no side effects in Dec 2021 when I began to show some resistance they moved me two 200 mg (suggested dose) and I am still hanging in their with very slow movement of my ALC. Iam hoping for another 6 -9 mo - 3yrs plus. Then another decision. I have never had V&O but like have a known in reserve so may try another trial just want more data on some of newer approaches. Let me know if you have other question-good luck with you decision. Fran
Osprey69 -
I'm hoping to get into the M.D. Anderson first line, limited duration pirtobrutinib (LOXO-305) plus venetoclax and obinutuzumab phase 2 trial in a couple of weeks.
clinicaltrials.gov/ct2/show...
Did they say how your new clone(s) resisted the LOXO - specific BTK mutations?
=seymour=
Hi Steve back in 7/21 impact testing at MSK showed PLCG2 at 6% Dr Mato felt that this was start of some resistance to Loxo action but felt I should stay the course. Today my ALC is hovering around 6:7 with min. Enlarged lymph nodes no other symptoms so I stay the course. As I think I mentioned I have not used V&O sort of keeping it in reserve. Any other questions let me know. Good luck with your plans. Fran
Hi Steve, at last a post I can give an answer to!! I'm on my 5th cycle of Venetoclax and Rituximab. I'm TP53 mutated. Its been a very positive experience so far with increased energy and generally not feeling ill anymore. It's not until I started on this treatment that I realized how rubbish I felt on Ibrutinib. I suppose that people who are told they have blood cancer expect to feel ill. I'm not sure that this should be the case and I for one have a new expectation that treatment can sort out my blood numbers and let me feel healthy as well.Good luck with whichever treatment you start
great to hear you’re doing well on V and R. It seems that most people are getting around 4 years of remission before the disease comes back - at least with IB.
Hoping that the new drugs like LOXO 305 and V and R extend or even promise MRD for us folks that are TP53 17p deleted.
Happy New Year
Starting on Ibrutinib after Idealisib complications.
Sex Life
Change of treatment from ibrutanib to Venetoclax. Progression of CLL?
