Osteoporosis AND Bone Marrow Disorders

This is not a study but a recommendation from Johns Hopkins. I would imagine this would apply to Tymlos as well.
Our choices are limited.
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Persons with elevated calcium levels, women who are pregnant or nursing, or persons who have ever been diagnosed with bone cancer or other cancers that have spread to the bones, should not use Forteo®. Because long-term treatment effects are not known at this time, therapy for more than two years is not recommended.
https://www.hopkinsarthritis.org › ...
Forteo Information : Teriparatide - Johns Hopkins Arthritis Center

I started on Evenity for severe osteoporosis in early October, 2024. By Christmas my white blood count was only 2. In early March I was diagnosed with AML ( Acute Myeloid Leukemia). I think it's likely that the Evenity triggered the leukemia, though my endocrinologist and hematologist both pooh-pooh that notion. If Evenity affects bone marrow it seems likely to me. I am extremely drug-sensitive and was very hesitant to take Evenity but was talked into it by an endocrinologist who assured me all would be well. Needless to say, I stopped taking the Evenity and will not be taking any more osteoporosis drugs.

Hello @normahorn

I just saw this post. At 59 I too have CLL and Osteoporosis.

Just wondering if you decided to start any treatments for Osteoporosis and how your CLL is doing?

I would prefer to discuss privately but you don’t have your account set to accept ?

I am so sorry that happened to you. I also have "crappy bone marrow" and lukopenia. I was told I have chronic anemia. I did 24 months of Forteo with no change to my blood work, which is monitored every 3 months. I have not fractured since the Forteo and actually starting another course of it now 8 years later. Maybe that could also work for you? I use Raloxifene as maintenance drug in between, also with no side effects. Depending on your bone density and fracture risk, you certainly don't want to give up as fractures are incredibly disabling. I am glad not to take Evenity from what I have read, plus my insurance would not cover it. I wish you all the best : ).

I have been on Prolia for almost 20 years. So far so good. I see my endocrinologist twice a year, with blood work before each visit. My blood work and dexascan are both good. This is only my experience. I have experienced dizziness since 2015, which has recently turned into vertigo. I’m not familiar with the drugs you mentioned, but would like to have a backup in case something does go wrong.

My mother (76) has watch-and-wait CLL (stable ~6 years) and severe osteoporosis with a prior hip fracture. She’s been recommended a 12-month course of romosozumab (Evenity).

Our concern: romosozumab works by inhibiting sclerostin, which activates Wnt signalling. Published research shows Wnt signalling is constitutively activated in CLL cells and contributes to their survival. Animal studies also show sclerostin depletion alters the bone marrow microenvironment in ways that could be relevant to CLL.

Her osteoporosis specialist acknowledged he isn’t familiar with CLL. We’ve contacted her haematologist and are awaiting his view.

Has anyone here with CLL taken Evenity, or discussed the Wnt pathway concern with their haematologist? We’d welcome any experiences.

@adam6891 I finish my second round of Teriparatide in April. I would greatly appreciate hearing what your haematologist advises as I am at least 6-8 months out on wait list to see one and being advised to go on Evinity next. I have Lukopenia and chronic anemia with abnormal red blood cells. Thank you for posting : )

@broken13 She hasn’t yet been able to speak with her haemotologist, however I received a useful note from the CLL society (heavily caveated as it is not supposed to be medical advice and is not intended to be a substitute for speaking with a medical professional). The person who responded said they had not heard of any providers having concerns and pointed me towards these studies (although they are relatively small and the follow up is relatively short):

Spanish Multicenter Study (2026): A retrospective study involving patients with onco-hematological malignancies (including CLL) found that romosozumab was both potent and safe. Patients saw significant improvements in bone mineral density (BMD) after 12 months. All-cause mortality was attributed solely to cancer progression, with no evidence that the anabolic treatment accelerated the malignancy or caused unexpected safety signals.

Cancer Survivor Study (2025): Research presented at the World Congress on Osteoporosis highlighted that in a cohort including patients with hematological malignancies, 100% of participants showed no progression or recurrence of their cancer during the short-term follow-up period.

Multiple Myeloma Pilots: While not CLL specifically, studies in patients with Multiple Myeloma (another B-cell malignancy) have shown that romosozumab significantly increases bone mass in the spine and hip without triggering disease progression.

Also an NLM article titled: “Bone health in cancer: perspective on the use of osteoanabolic agents”

@adam6891, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post it for you:
- Bone health in cancer: perspective on the use of osteoanabolic agents https://pmc.ncbi.nlm.nih.gov/articles/PMC12402605/

@adam6891 Interresting. I have an appointment with my endocrinologist early April. I will just be completing my 18 months of Teriparatide. Previously treated with Forteo in 2016 for 24 months. She will likely recomend Evenity, but will update final outcome once we have a decision : ). Right now I am so fatigued, I am reluctant to take another heavy duty medication.