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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 Think We Can Treat Our Leukemia With Medication And Live A Happy And Healthy Life?

A MyLeukemiaTeam Member asked a question 💭
Valley Springs, CA

I take Brukinsa which is a TKA Inhibitor. A substance that blocks the activity of a protein called Bruton tyrosine kinase (BTK), which plays an important role in the development and maturation of B white blood cells. My white blood cell count is normal 6900. I have no ill affects taking Brukinsa. I think more information should be available for team members to review. The current treatment information is dated and incomplete.

August 18, 2024
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A MyLeukemiaTeam Member
August 20, 2024
A MyLeukemiaTeam Member

Yes, a great deal those diagnosed with leukemia can live a long and happy life but unfortunately, there are still some leukemias that do not have meds to extend life for any significant amount of time. So, my bit of advice is to live each day to the fullest and hope researches find better treatments.

August 18, 2024
A MyLeukemiaTeam Member

Robert,
You are so right. So many treatments are very old and outdated. The doctors must keep up with new treatments to enable the patients the best possible outcomes and quality of life.
I was given 7-19 months and explained different ways to treat TPLL.
I thought if I have a short time then I had rather spend it at home taking a new drug by mouth instead of being in and out of the hospital, taking chemo, getting infections, having transfusions, being sick every day with no quality of life.
Thankfully, my choice has worked for me. I have already passed my length of time.
My decision is not for everyone and some patients handle Campath better than others but I have never regretted my choice.
As a nurse, it frustrates me that some physicians don't educate themselves with the new drugs and treatments, don't inquire about them or even reach out to other physicians who are very knowledgeable about them. We have too many major cancer centers in our country to reach out to and that goes for obtaining the right doctor too.
We must be proactive and educate ourselves on our diseases if we want any quality of life.

August 18, 2024 (edited)
A MyLeukemiaTeam Member

I like your position regarding choosing how to treat our illness. When I read about the side affects I did much thinking about choosing treatment or "watch & wait?" I am glad I had no ill affects. I think the listed ill affects may be just things a few people had reported versus an affect everyone should expect when taking a medication? I think many doctors are not up to date with treatments because my doctor sure did not provide me with any confidence or hope. I did become very confident with the nurse practitioner who replace my doctor and my treatment I requested was quickly approved. I hope other team members can learn from our medical experience to find their "correct" answer when they make their medical choice?

August 20, 2024
A MyLeukemiaTeam Member

I was on Brukinsa too and had great results. However, I was diagnosed with stage one breast cancer (not because of Brukinsa) and I’ve had to go off of it before and after surgery. Also have to stay off of it during my chemo and maybe radiation.
My counts came pretty much back to a good range for my CLL. So I won’t hesitate to go back on it after this journey I’m on!!

August 18, 2024

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