Thanks everyone who responded to my last post “CLL, Alcalabrutinib, Gout & Steroids” it really does help. Usually i find myself on this site when i’m at my lowest, usually when a new side effect takes hold.
My haematologist has never once accepted that what im experiencing is a side effect of acalabrutinib, instead refers me to my GP
Ok rant over
Ive now got low testosterone, which explains a lot, anyone else with similar experiences and does replacement therapy have any downsides”
Thank you, for your responses to the above post. Before CLL i trained most mornings , and coached boxing at night. So I was always fit and active. Having this taken away has been hard, waking up aching and with no energy and top of that the pain and muscle wastage from the gout felt like the final straw. The steroids they gave me for gout made such a difference, i felt normal for 5 days. I asked for steroids but was refused due to the risk of side effects.
Told my GP Doctor about the fatigue and he sent me for a blood test this is how the low T was identified. They have asked me to complete another blood test in a month, to confirm the levels are consistently low. I assume at this stage they will consider treatment if its still low. What i would like, is to hear from people who are taking Alcalabrutinib that have also been given TRT.
Thanks again
thsnks in advance
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Tomaljoe69
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I was on acalabrutinib's older cousin, ibrutinib, for 9 years. How do you know that your testosterone is low? Was it a routine test by your GP or cancer specialist? I'm 76 so I'd be surprised if my testosterone isn't low. I agree with "Spark_Plug." Acal & testosterone med might not mix well. In fact, I would be cautious about taking testosterone med while on W&W for fear it might cause a rise in more things I would want.
Currently on a "drug holiday" from ibrutinb. I no longer chase the spouse all over the house ... now, I just wait in ambush.
Several years before my CLL diagnosis in 2011, when I was seeing almost every specialist in the building, I had my testosterone checked by my primary care at her suggestion. I was 52 years old. The test came back as low - 210ng/dL, range 350 to 890 ng/dL. I had another test - Free Testosterone - that came back 45pg/mL, range 47 to 244. But a couple months later, it re-tested at 144pg/mL.
So I went to a urologist, who ordered a bunch of additional tests, including TSH, T3 uptake, T4 Total. The upshot was that I started on a testosterone lotion. It brought the tests back into normal. But it made me irritable, so I stopped.
Back then, a product for low testosterone was advertised on TV. The announcer called the condition, "Low T." I think it was found that higher testosterone was associated with more heart disease and prostate cancer.
A lot of my fellow docs with CLL and friends in general had great responses to testosterone replacement.
I’ve tried it with not much change.
While I agree that non-CLL issues can cause symptoms, my oncologist did a very thorough work up to find any and that came up negative for me.
But I do think a thorough work up by a primary care doc would be useful because all of us are aging and they’re a lot of things that can cause similar symptoms besides CLL.
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