Recently diagnosed with Stage 3 CLL. Currently on Brukinsa and will be soon be starting Zometa (bone resorption infusion).
Apparently, it is quite rare to have CLL that also presents with bone damage. In my case, I had a walnut sized tumor in my T12 vertebrae that had to be radiated. I also have two lytic spots in my pelvis, the lager of which is 2.1 cm. Finally, I have a few nascent spots in some of my other spinal vertebra which are not too damaged yet, thankfully.
I am IGVH unmutated, but have Trisomy 12 and Plasmatic Variation (which apparently is responsible for the bone issues).
I would love to connect with someone who has experience/knowledge about this. Anyone?
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MarquisMark
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Thank you for that. I will look them over, but at first glance, these do not really relate to my question (I had looked before posting and couldn't find the answer).
Most of these are about people having osteoporosis and wondering whether CLL caused it. In my case, they are saying my CLL IS causing tumors in my spine, lytic regions on my pelvis, etc., which is quite a different thing (and arguably more dangerous) than osteoporosis.
I am hoping to connect with someone who has my particular issue.
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