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Osteoporosis AND Bone Marrow Disorders
Osteoporosis & Bone Health | Last Active: Apr 11 6:38pm | Replies (21)Comment receiving replies
I'm still searching for answers & now feel I cannot just dive into any of these drugs without help having CLL. Physicians are difficult ...quick to answer, brush off concerns, have no evidence to say some of the things they claim, I wish it weren't so! We're left trying to figure it out.
I'm so confused and worried. Last oncologist, "no relation btwn the two" (CLL & Osteo) "no issue taking osteodrugs!" So as uneducated as I am on these complicated topics, I am trying to ferret out answers for my own safety. Shouldn't be this way!
I'd like to ask @gently if you can explain in layman's terms or have any insight to share on this topic of CLL & osteodrugs?
I will be heading to moffit April 12th for a thouough exam, but I'm truly losing faith in the medical profession & their lack of understanding this complicated disorder.
Replies to "I'm still searching for answers & now feel I cannot just dive into any of these..."
rola,
there is very little research on CLL and osteoporosis. Both are thought to be conditions of ageing and not interactive or causative either way.
'A recently published study places suspicion on the bisphosphonates as unsafe in low dose and unsafe in higher dose with Cll as it advances the disease. It is a carefully arranged Italian study using human cll cells in petri dishes.
Of the remaining drugs Prolia, Evenity, Tymlos and Forteo, Prolia and Evenity has enough risk factors for everyone, though nothing siginificant is evidenced for CLL.
Of the final two medication Tymlos and Forteo I've found no studies regarding CLL. The nice aspect of both of these drugs is that they leave the body within 24 hours. So if you noticed anything untoward you can simply stop the drug. I'd choose Forteo because of its lower dosage.
You want to be careful that there are no interactions with other medications you are taking.
You may encounter medical providers who are not aware that there is not longer a warning on Forteo for bone cancer. This supposition has been determined incorrect.
You might copy this report for physicians who may not have seen it. The direct relationship between bisphosphonates and CLL is compelling. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10821833/#:~:text=Chronic%20lymphocytic%20leukemia%20(CLL)%20is,treatment%20with%20bisphosphonates%20(BPs). " Unexpected Chronic Lymphocytic Leukemia B cell Activation by Bisphosphonates. . ."
You shouldn't have to struggle for this information on your own. I hope your appointment at Moffit will advantage you.
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I've been putting this off, yet I think the only straight answers I'll get are from Dr McCormick. He has a compassion to pass on his well reasearched understanding of this field. The fact he's a DC and not MD has no bearing since he is lightyears ahead of the medical profession. I hope moffit & McCormick can agree on some path to treat.