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Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I have CLL/SLL since 2018 and on Imbruvica a few months later in 2019. Diagnosed with Neuropathy in 2023. My symptoms have gotten worse in my feet and it hard to wear flat shoes. My Neurologist just said she has been researching Imbruvica and that it was the cause of my neuropathy. My Oncologist would not listen to me if I tried to tell him this, so she messaged him with all my information. I got a call from his nurse scheduling me with an earlier appointment in August
Although he has agreed to… read more

July 13
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A MyLeukemiaTeam Member

When I began treatment I had one doctor recommending treat and on second opinion was told watch n wait. I felt more comfortable with the do tor recommending treatment.
The drug is cery expensive, it can cause other cancers and problems too. It comes from China. The same country that has been sending fentenol through Mexico and killing people.
I also did some research an discovered that with cancer drugs the doctors receive part of the money spent to purchase drugs. Not saying it was recommended for this reason but I was doing well and wanted to see how I would do without it. So far all has been well.

July 25
A MyLeukemiaTeam Member

Last year I had read an article and learned that those bad cells can attack the nervous systems in a person’s body. If there is a little problem those cells will collect. I know we have fatigue but we should pace ourselves and do what we can so we can be mobile or flexible.

July 25
A MyLeukemiaTeam Member

I was on Imbruvica for 3 plus years and stopped taking it with doctor approval. Doing fine without it. I do have some issues with my feet. Don't think it is related to the medication. I have type 2 diabetes and I don't excercise enough. Get a good pair of walking shoes and walk as much as you can. Avoid getting sores and talk to doctors.

July 19
A MyLeukemiaTeam Member

I think we do what we can and sometimes we do more than expected?

July 31
A MyLeukemiaTeam Member

Hi Robert. I am hoping that my doctor switch me to another medication that doesn't cause neuropathy. Also if he does that all the damages in my legs and feet will improve. I haven't went out walking in a long time, due to other health problems. But I try to keep myself busy, inspire of how I feel. Thank you for replying to my message. I wish the best for you.

July 29

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