CLL and Osteoporosis

[Limelake]

Need to start treatment for osteoporosis and have read there are concerns it might cause progression in CLL. Is anyone on an osteoanabolic with CLL? Ty

[fapumpkin]

I have been treated for osteoporosis for the last 8 years, at the same time as taking Ibrutinib for CLL (I started Ibrutinib before osteoporosis treatment). I haven't heard that osteoporosis treatments can progress CLL. I have had 4 different treatments for osteoporosis, not all successful but at this moment in time I am being treated with Denosumab, which is a 6 monthly injection. My CLL is considered stable on Ibrutinib, I have had 11 compressed fracture vertebrae at the age of 51, no accidents, one caused by turning over in bed. Ibrutinib is also my first treatment for CLL. I was on W&W for 9 years.

[Limelake in reply to fapumpkin]

Thank you so much for this information. I've been so nervous to start osteo treatment and hearing this has helped me so much. Xo

[GMa27]

I have had CLL almost as long as I have had OP- 16 years. No doctors have ever told me they are effected by any meds for either condition. I took Actonel, Forteo shots, repeat Actonel & now getting Prolia shots. I was treated with FCR chemo 6 years ago. I took a break from bisposphonates for a few years & it may have been during my chemo but not because of it. Always good to get second opinion. Taking daily CLL meds may be totally different.

[Limelake in reply to GMa27]

Thank you, hearing from people actually dealing with both and not having a negative impact gives me confidence in moving forward. I'll be starting Tymlos very soon. What I've read has been in vitro, no human studies, so hearing you're experience means more to me than you'll ever know. I've been so torn. Tysm.

[RosettaClapp]

Maybe you read the side effects of Prolia which says it can affect the immune system? Nothing about making CLL any worse

[Limelake in reply to RosettaClapp]

Very possible. I've read some AI generated reports from Mayo Clinic that left me a bit concerned, but I'm putting that behind me and moving forward. Ty Rosetta 🥰.

[camper2]

I am Osteopenic (not far off osteoporosis) and take Risedronate weekly (just in case). My bloods were ‘normal’ and stable before and are ‘normal’ and stable now, after almost a year of starting Risedronate.

[Limelake in reply to camper2]

That is so encouraging! My concern was that my CLL would advance. I am blessed to have found this site and tysm for sharing. It's hard to explain, but it's as thou a calm has replaced fear from all of your feedback. Take care❤️

[Katie-LMHC-Artist]

I have been on Forteo and just finished Prolia. My CLL specialist said there was no research on these drugs affecting CLL leukemia. Hope that helps!😊

[Limelake in reply to Katie-LMHC-Artist]

Katie, I hope you've had great improvement. What will you do next? I understand you need to follow with a type bisphosphonate to lock in those gains.

[Katie-LMHC-Artist in reply to Limelake]

I read this book a few years ago which was informative. It is written by a chiropractor who was diagnosed with Osteoporosis when he was younger and competed athletically. When I saw that he had an office fairly close to me I went and saw him a few times. He encouraged me to start on Forteo. When I was done with that, and started seeing a specialized Endocrinologist for Osteoporosis, she recommended 2 years of Prolia. I am now done with that and see her in October after my next scan. I am unsure what is next.

I just switched over from Acalabrutinib to Zanabrutinib and was told I could not be on Prolia while on Zanabrutinib. I am glad I just finished Prolia. Again, I am not sure what the next step is. I am glad you are looking at all your options and asking questions. Take care.🦋

Book on osteoporosis

[Limelake in reply to Katie-LMHC-Artist]

Yes, Dr McCormick how fortunate to have been able to meet him. Very knowledgeable 😊. Thanks for the book recommendation. I'll search for it. Best wishes on your follow-up.

[Limelake]

Katie, tysm. I am so glad to have found this site it has eased my mind tremendously. Hearing actual stories from patients suffering from both diseases, I will no longer delay treatment on my osteo. My Dr did recommend treatment for osteo I just was very fearful of the unknown.

Again, thank you for sharing.

[J1015]

I have been on Fosamax and Boniva for five years combined. My numbers are still stable as ever. My endocrinologist says there are no issues with the CLL.

[Limelake in reply to J1015]

WOW, all positive reactions! Tysm for sharing. I'm kinda sorry I delayed my treatment, but I am moving forward now due to all the positive reactions. Best wishes for the future🥰.

[DoriZett]

As others have replied - I have not heard of any progression of CLL/SLL due to osteo meds.

I did have a bad reaction to a Reclast infusion (non-stop vomiting and intense bone/teeth pain for 7-10 days). The endocrinologist who prescribed said I am "allergic" to it - and advises not to take it again. She is keeping me on calcium and suggests weight bearing exercise (I have other injuries and conditions that make this challenging), and NOT TO FALL🤷‍♀️ (does one ever PLAN on falling?).

I believe my onc, who stepped in on a weekend to prescribe anti-nausea meds, would suggest continuing the osteo treatments, and just give me medication to help me through any side effects - but that is not his ongoing treatment "lane".

I am getting bone density tests annually and if the osteopenia progresses to osteoperosis - I might need to have more discussions with my medical providers. I have only heard of one other person who had this reaction - so I believe I am the exception - not the rule. Most take the osteo meds/infusions without incident. I wish that for you.

[Limelake]

Thank you, Dori. I am very encouraged to move forward. I hope to do an anabolic first. Had a visit today with an oncologist in Vero Brach FL, and he 100 percent says to treat the osteo. I am so relieved by all your responses. Tysm and much love.