I’m coming up on 12 years since initial diagnosis. I started treatment with Ibritinub in 2016 and came off shortly thereafter due to side effects. Started a clinical trial of Acalabritinub in 2017 and did really well in that drug until Jan of this year.
Now on Pirtobritinub.
Would love to hear from others that have been living with CLL for many years. What has your treatment journey been like?
I’ve been on Brukinsa for 18 months now and due to have a tooth extracted next week. I informed my dentist that Brukinsa carries risk of bleeding and she emailed my specialist for advice. I also spoke with him last week and he told me I don’t need to stop meds at all. Contradicts everything I’ve read about stopping before and after if having surgery. Anyone had teeth extracted and continued medication?
Thanks to everyone who responded to my first post. I saw the haematologist on Wednesday at UCLH and was diagnosed as having CLL. He agree that my other bloods are all stable and examined my lymph nodes and found nothing untoward. So will be watch & wait for now. I am now being passed to the specialist CLL team and will see them when I am back from my holiday at the beginning of August. The haematologist said all my tests hadn’t cone back yet so he couldn’t tell me any more details about the markers etc. Any tips on what I should be asking at my appointment? What else do I need to know at this stage?
I remember the first time a patient told me: "The CAR-T worked perfectly. I was in remission for 8 months. Then... it came back."
She was devastated. Her doctor said the cancer had become "CD19-negative." The CAR-T cells—trained to hunt CD19—were now blind.
She thought she was out of options.
She wasn't.
What is CD19-negative relapse?
CAR-T therapy for blood cancers usually targets a protein called CD19. It's like a flag on cancer cells. CAR-T cells find the flag and destroy the cell.
But cancer is smart.
In about 10-20% of patients, cancer cells learn to lower the CD19 flag. They become invisible. The CAR-T cells swim right past them. This is called "antigen escape."
What happens next?
Most patients are told: "We've done all we can."
But there are options emerging:
What about cost?
I run a small platform that helps patients navigate these options. I'm not a doctor. I don't charge patients. I just help people figure out where to go and what questions to ask.
If you've relapsed after CAR-T, ask me anything. There may be roads you haven't seen yet.
My dad and his sister/my aunt have both got CLL. I don't really know what stages they are at, as we haven't had an indepth conversation about it yet. My Dr mentioned doing generic testing... should I? Im in my late 20s and from what I know, I don't have cancer. No symptoms. I'm kind of worried about costs since I'm in the USA. Would appreciate some info. My mother's side has no history with it.
Hi all, my dad (74) just started lenalidomide and by day three his lymph nodes have become extremely swollen and tender, it is hard for him to turn his neck from the swelling. He's so freaked out by these symptoms, although the doctor assures him that this is a function of the medication working.
Does anyone have any anecdotes or personal experiences I can share with my dad to assure him that he should keep taking the medication? For now he has gone off the medication against everyone's advice. I'm hoping people's lived experiences taking lenalidomide for CLL and their experience with swollen lymph nodes can provide the kind of reassurance my dad needs right now. Thank you.