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Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: Jun 22 7:21am | Replies (368)Comment receiving replies
@hissteps4u Thank you so much for the email. I appreciate you! I had MGUS for 4 years and diagnosed with CLL and LPL a few months ago. My first oncologist was not good so my primary doctor referred me to another one. He is much better and listens to me and educates me. I have lost 10 or more pounds and have fatigue but my lymph nodes don’t seem swollen. The back of my right knee is and I have blood clots. I’m going in for a venous ultrasound next week. No sweats. It’s hard but I walk almost every day and do yoga stretches. It helps a lot. They determined I have this from blood work and a bone biopsy.
Replies to "@hissteps4u Thank you so much for the email. I appreciate you! I had MGUS for 4..."
@suzjlance Hi, I didn't have any noticeably enlarged lymph nodes either – though the doctor found them to be very slightly enlarged. Regarding weight loss, I was having some of that as well. They determined that I had a slightly enlarged spleen, which was apparently pressing on my stomach. After starting Zanubrutinib, it resolved my hunger issues.
Best of luck at your next doc visit!
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@suzjlance
Nice to meet you!
With CLL being an active participant in your care is paramount to your Journey! Knowledge is key to understanding how this disease works! Understanding your genetic makeup and how it affects your Body helps you to make informed decisions on your overall care and health!
This CLL we share can not be controlled and eliminated, only altered and managed to a degree!
Unfortunately for us our genetic makeup decides what’s going to ultimately happen!
The best we can do is Live our best Lives daily! Hope that medicine helps keep the inevitable at bay for as long as possible!
Till there be a a cure, this is a life long process!
In the past 6 years they have made strides in medications for our use!
Car T therapy hold a promise but only a small percentage of patients reach MRD Minimal Residual Disease!
Bone Marrow replacement therapy yet that requires Chemo and potential set backs due to being Immunocompromised as we are already! Also ones over all health comes into play in the decision making process if it is even an option!
Infections are our worst enemies and we must be vigilant against them!
Like my Dr says, anything over 101 temp go to the ER period!!!!!
My Motto is Live,Love, and make the best of everyday one day at a time!
Best wish’s
Cliff