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Chronic lymphocytic leukemia (CLL): How do you manage side effects?
Blood Cancers & Disorders | Last Active: Nov 16, 2022 | Replies (24)Comment receiving replies
Hi guys - I'm Bob, an over 4 year carrier of CLL. Yesterday I gave up and signed into Hospice as an outpatient. They gave me all kinds of pills for unrelated maladies mostly associated with old age - I'm 88 and healthy up until now. It's been a long hard battle against CLL but he won out. I was kept in the active portion of life by red blood cell infusions every two weeks until I couldn't take it any more. So, here I am, waiting to see what's next in this world. ENJOY
Replies to "Hi guys - I'm Bob, an over 4 year carrier of CLL. Yesterday I gave up..."
@sirbob Hello Bob. I am Nancy, another Mentor on Connect with my own “Welcome” to you. You made me smile. Your self introduction started with words, “I gave up”, then you proceeded to tell us how you did everything BUT give up. Making the choice you did was continuation of “calling your own shots” and making your own choices. You deserve congratulations. In June 2020 after months in remission but still struggling with side effects of maintenance treatment I decided to take the risk and take myself off maintenance. Giving up? Not a chance! But choosing some better quality time for awhile was possible. I hope that you find living with 88 on your terms is everything you want and deserve. Please do come back and share what your quality of life looks like.
Peace, Nancy
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@sirbob Hi Bob, it’s my pleasure to meet you. I’m Lori, one of the mentors for Mayo Clinic Connect. Connect is a wonderfully helpful environment filled with caring people. You’re never alone here so I’m happy that you’ve found us.
You’ve reached a critical moment in your life and cancer treatment. I’m sure you’ve thought long and hard about making the difficult choice to stop maintenance treatment for CLL.
There is something empowering about taking control of your life when reaching a point where you are tired and realize the battle has been won ‘by the other guy’. I had similar thoughts time to time during my aggressive war with AML. I was able to have a bone marrow transplant which was like dropping the A-bomb on my cancer...as you know, that’s not without collateral damage. 😉
With your bi-weekly transfusions, you must have had a roller coaster ride of other medical side effects. Has your liver been affected with high ferritin levels?
Hospice will be a valuable resource for you and the nursing staff will do everything they can to help you maintain quality of life and comfort while you maneuver through this last phase of life.
I’d like to know more about you. What was life like before CLL? Did you enjoy what you did for a living? Married, children, grandkids, pets?? Nosy aren’t I?! ☺️