My name is Anja, 67 years old , and I live in the Netherlands.
I was diagnosed with CLL in september 2010.
In 2012 I got FCR for six rounds. After that I was stuffy and it occurred that I had heart failure because of the chemo therapy.
It took me years to recover from that.
In 2017 I started with Ibrutinib and stayed on that for 4 years. I had to stop because I got side effects (aspergillis) on my skin.
After a few months my glands enlarged and I felt stuffy.The glands pushed against my longs. I had to stay in the hospital en started wit venetoclax and rituximab.
I did very well on that for 2 years. they were the best from my CLL journey.
2 months ago I had to stop with venetoclax because the 24 months were passed.
After 3 weeks I already felt swollen lymph nodes on my neck.
last week my CLL specialist told me that now is the moment for a stem cell transplant.
I am afraid to start with that treatment because of my heart and overall condition.
I would rather continue wit Venetoclax.
I hope someone of you can tell me what to do.
Are there more possibilities then stem cell transplant?
I can understand your concerns about which treatment to pursue next given your cardiac issues. Of course you need to be guided by your medical team but I’m just throwing this trial out there as another consideration. It’s for people who are relapsed/refractory and uses Epcoritamab as a mono or combination therapy. There appear to be at least four centres in the Netherlands hosting this clinical trial but I’ve no idea if they are close to you or clinically suitable. I note that one of the trial exclusions is ‘Clinically significant cardiac disease’ but I’m not sure whether your situation would exclude you.
Worth having options to consider however if you are concerned about a SCT at this stage. They can be exceptionally successful but none of us underestimate how onerous they can be. Hope you can find a treatment to suit you. Please keep us updated as these issues affect other members too.
Hi Newdawn, thank you, I am in the Academic Hospital near Rotterdam, I hope to see my hematologist this week, i shall ask her about the clinical trials.
I see that you have been very strong, are very strong. Can you tell me why you had to stop the Venetoclax after 24 months? Is it some rule? I don't understand why they would make you stop taking it if it was still working well for you... (I don't know much yet about the new CLL medications-- forgive me if this is a naive question.). I am wishing you well!
I did wonder that too because it sounds like the Venetoclax was holding the condition but perhaps it was a time limited therapy. Different countries with differing treatment availability.
No chance of extending the Venetoclax Anja if only until something suitable can be arranged?
I’m also in the UK and stopped R and V treatment at end of this June. . It’s only funded here for two years. Had a consultation yesterday and bloods and everything was fine.
I'm in the UK. Diagnosed 2018, FCR 2019. Secondline treatment started because of enlarged lymph nodes. I'm on venetoclax and rituximab started 2023. That was prescribed for 2 years and I complete it in 6 months. I was offered another option (sorry, can't remember which) but that would have meant continuous treatment. I opted for V and R.
It may be a cost protocol for your country's health service. I am in remission after one year of Venetoclax and if I relapse, I can go back on Venetoclax as side effects did not stop my Venetoclax. I live in USA. Blessings.
Even though most protocols say to stop venetoclax after 2 years, there is at least 1 person here who noted it took 5 years for them to reach remission. IDK if your doctor/country would allow this, but it's not unheard of to continue with venetoclax longer.
It seems to me, "reactive nodes" would warrant therapy continuation. It would in the US, IDK about the process in other countries. Even in the US, depending on someones' insurance, the doctor may need to obtain a Prior Authorization if it's outside the "standard therapy."
Hi, i hope that it will be possible for me to get the Venetoclax for more months or that i can go in a clinical trial, so that i and my family get more time to think about a stemm cell transplant
so sorry for relapsing so soon Anja. I second Newdawn suggestion about possibility with continuing with Venetoclax. I live in Canada and my doctor gave me a choice of combination of Venetoclax/Rituximab for 2 years or Venetoclax only long term.
I chose the 2 years, which I finished in February 22, which gave me 2+years remission. Unfortunately, I am starting to present some symptoms so my remission might be coming to the end.
I am really interested what decision you will make Anja and wish you the best of luck 🤗
Anja, unfortunately the Netherlands hasn't kept up with improvements in CLL treatments to the same degree as other, similar, nearby countries. If you can't join a clinical trial, you might need better options than are locally available. Does your health insurance and personal circumstances enable you to have your CLL management done in Cologne/Köln Germany? That is where the world renown CLL Germany Study Group is based.
Sorry to read this, 2 months is no time at all. to have swollen lymph glands you had almost certainly started to progress while on treatment.
Venetoclax + Rituximab (VenR) is a fixed duration 2 year treatment everywhere based on MURANO trial protocol. Used for relapsed patients with at least one previous line of treatment. Early relapse within 6 months is taken as an indication that it's no longer of use and continuing or repeating won't be effective.
You would only be delaying the AlloSCT and be less fit in 2 years time (if that). MURANO trial had a sub-study that repeated the VenR treatment for some that relapsed. None of the subjects were uMRD4 at end of 2 years treatment. Although a few did reach uMRD4 during treatment it wasn't sustained. The sub-study patients were mainly del(17p)/TP53mut and had a median time of 2.3 years (range 1.2–3.1) since final dose of Venetoclax on primary study. As you are progressing at 2 months it is very unlikely that you would continue to respond to Venetoclax if it was restarted.
AlloSCT is more successful when in remission. As you didn't relapse on Ibrutinib it may be possible to use Acalabrutinib as a bridge (gap filler to reach AlloSCT) and to reduce the lymph nodes prior to the AlloSCT. Acalabrutinib has different side effects compared to Ibrutinib. Another alternative is Pirtobrutinib. I'm not sure about approvals of these drugs in The Netherlands.
Tumour flare is common when stopping BTKi drugs but very uncommon after Venetoclax. Tumour flare is often mistaken for Richter's transformation/syndrome. Your doctor should test to ensure this isn't Richter's transformation. The first test is a PET/CT scan to check no nodes have a high SUV (sugar uptake value).
hi, thank you, i am in the hospital at the moment. Tomorrow i get a Pet/ct scan, i had a bone narrow puncture last week, they want to remove a gland in my neck to see how active the CLL is.
I wish you well in your decisions and Journey. I’ve been through many of the things you’ve experienced and I’m 73 days removed form a Bone Marrow Transplant. I’m doing pretty well.
I also have a friend who has similar markers TP 53 and others and just completed a CAR-T procedure. I believe he had heart issues at one time. I could check on that for you. He’s also doing well.
You have received some great advice from other posters. I realize you have difficult decisions to make. Hoping for the best in your fight with this disease.
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Still on hold for stem cell transplant
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Starting Venetoclax mono on Monday
