What are the best treatment for CLL? Is CAR T cell therapy an option?

Posted by sofaramnotdead @sofaramnotdead, Jul 30, 2021

[July 30, 2021 1:43 P.M.]I don't need treatment right now, fortunately. I've been in remission for over 5 years. Would you say that treatment for CLL has drastically improved in the past 5 years? I know that doctors might say that the treatment for every disease has greatly improved, but I want to find out what is really going on with the best treatments for CLL. Thanks! 🙂

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Hi @sofaramnotdead, CAR-T cell therapy is one of the most promising areas of cancer treatment, especially in blood cancers. The FDA-approved conditions for CAR-T cell therapy include:
– B-cell precursor acute lymphoblastic leukemia (ALL), in people up to 25 years of age
– Diffuse large B-cell lymphoma (DLBCL)
– Primary mediastinal large B-cell lymphoma
– Large B-cell lymphoma transformed from follicular lymphoma
– High grade B-cell lymphoma
– Aggressive B-cell lymphoma not otherwise specified (NOS)
– Mantle cell lymphoma
– Follicular lymphoma
– Multiple myeloma
People who have relapsed or refractory disease may be eligible for CAR-T cell therapy.

Here is a list of current CAT-T clinical trials being conducted at Mayo Clinic, including some involving CLL. https://www.mayoclinic.org/departments-centers/car-t-cell-therapy-program/sections/clinical-trials/rsc-20405550

I also found this review paper about
– Recent advances in chronic lymphocytic leukemia therapy https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7386886/

You said that currently you are not in active treatment. What is the status of your CLL at the moment? How often are you monitored? How are you doing?

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I am in active treatment now. Venetoclax, 200 mg daily. Allopurinol, 300 mg daily. Starting Rituximab infusions 10 Aug, every 28 days.. I am ok except very tired all of the time.
Ron

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@rip

I am in active treatment now. Venetoclax, 200 mg daily. Allopurinol, 300 mg daily. Starting Rituximab infusions 10 Aug, every 28 days.. I am ok except very tired all of the time.
Ron

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Hi Ron, it’s really great to hear from you again! I know the first time you were in treatment for CLL you’d had 2 treatments. They made ill and you had to stop. It sounds like your new doctor is a little more encouraging with trying some different medications to help you with the symptoms of CLL.
I’m happy to hear you’re feeling ok except for being tired. Unfortunately that can be a side effect of your disease as well as some of the treatments. Hopefully that passes and you regain some energy.

When told about the Rituximab, were you given a time for how long each infusion would take? Usually it’s administered over a couple of hours. So when you go, make sure you take some snacks, water, a book or iPad along to keep you busy! I’ve had these IV’s too and they have to drip slowly. But it’s a good anti inflammatory medication to keep symptoms down.
When did you begin this new treatment?

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I was diagnosed with CLL 7 years ago at age 64 and have had semi annual testing since then with little or no change in my conditions. How long before I'm likely to need treatment?

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@loribmt

Hi Ron, it’s really great to hear from you again! I know the first time you were in treatment for CLL you’d had 2 treatments. They made ill and you had to stop. It sounds like your new doctor is a little more encouraging with trying some different medications to help you with the symptoms of CLL.
I’m happy to hear you’re feeling ok except for being tired. Unfortunately that can be a side effect of your disease as well as some of the treatments. Hopefully that passes and you regain some energy.

When told about the Rituximab, were you given a time for how long each infusion would take? Usually it’s administered over a couple of hours. So when you go, make sure you take some snacks, water, a book or iPad along to keep you busy! I’ve had these IV’s too and they have to drip slowly. But it’s a good anti inflammatory medication to keep symptoms down.
When did you begin this new treatment?

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New treatment began four weeks ago.
Ron

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@carl50

I was diagnosed with CLL 7 years ago at age 64 and have had semi annual testing since then with little or no change in my conditions. How long before I'm likely to need treatment?

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Hi @carl50 Welcome to Mayo Clinic Connect. Members aren’t medical professionals so we can’t diagnose health problems. However, we can share our own personal experiences and insights to help find answers, give suggestions and offer encouragement.

You’re really fortunate to not need any medication for your CLL. Over the 7 years since diagnosis you’ve had blood work every 6 months and nothing has changed. That’s really great news. If I were you, I’d just keep on enjoying life as you are now. There’s no point in worrying about “what ifs”. I bet you were really concerned 7 years ago and look how far you’ve come with no change. If the blood numbers do change then there are quite a few options for treatments. But there’s no indication of that yet.

Your hematologist would be the best person to ask since he knows your case. Has he or she said anything about possible future treatments?

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Lori, thank for the encouraging words. Her advise was the same as yours but I know it’s a matter of time. Being apart of this group will help me process changes when they come about, until then live my life.

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@carl50

Lori, thank for the encouraging words. Her advise was the same as yours but I know it’s a matter of time. Being apart of this group will help me process changes when they come about, until then live my life.

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Hi Carl, those are sage words, “live my life”. It’s really the best choice for any of us. If you think about your comment that “it’s just a matter of time”, you’re right! For any of us, whether we have cancer or are perfectly healthy. The old, “I could be hit by a bus tomorrow” rings true. Your CLL bus is pretty far down the road right now.

I had AML which is CLL’s much more aggressive and evil stepmother. I no longer fear the worst because I fought that battle and so far I’m meaner than she is! Living the life I have right now is a gift. Yours is too! I allow myself a grim fleeting thought on rare occasions and then move along. I’ll face whatever happens head on, when and if the time comes, not before.
I encourage you to do the same. Keeping busy is a great distraction. What is it you enjoy doing in your free time?

I’m really happy you’re part of Connect too! There are over 70 groups on any medical subject imaginable. Active CLL may not be your concern right now but I’m betting you have some great life experiences that might help other members in our forum. Just Want to Talk, is a fun group where members come together to share stories, photos, and just sit with a cup of virtual coffee.

May I ask what you were searching for that brought you to Connect?

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Shared experiences, expectations, and support

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@carl50

Shared experiences, expectations, and support

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It looks like you won the trifecta when you joined Connect! ☺️

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