Osteoporosis: I am just completing 1 year on... - CLL Support

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Osteoporosis

Dawson21 profile image
9 Replies

I am just completing 1 year on Venetoclax having also had 6 x Rituximab. My most recent CT scan showed 2 fractured vertebrae which my GP thinks is probably osteoporosis but a bone density scan will confirm this shortly. We checked the scan taken before treatment and no fractures. I'm wondering if this could be connected to the medication in some way? Anyone else had a similar experience?

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Dawson21
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9 Replies
mrsjsmith profile image
mrsjsmith

Similar and on Ibrutinib and my latest Dexa scan has shown Osteoporosis in my right hip, but can this be due to my medication or the ageing process. I certainly don’t know, but I am going to have to make sure I don’t fall over. 🤞

Colette

skipro profile image
skipro

CLL is a disease of the bone marrow and causes osteoporosis

in addition to other things like smoking, malnutrition, excessive alcohol use, diabetes, early menopause, hypothyroidism, etc

Mike

MD and CLL patient

Granna45 profile image
Granna45 in reply toskipro

Since we have a disease of the bone marrow AND osteoporosis for these other various reasons also, will recommended Prolia and other drugs actually help those with CLL and other blood cancers. My laptop won't type question marks, sorry.

BayfieldAnnette profile image
BayfieldAnnette

My husband recently been diagnosed with osteoporosis after having a dexta scan he's been on ibruvinib for 5 year's for CLL, and recently been diagnosed with advanced prostate cancer.

Catnap7 profile image
Catnap7

Hi Osteopenia on the border of Osteoporosis Well, I did a bone scan right before 2 yrs of Ibrutinib and Venetoclax Then did another scan after my trial There was no change at all For the most part I was on 280mg of Ibrutinib and full dose Venetoclax Catnap7

UKfulloflife profile image
UKfulloflife

My first treatment was a combination of Ofatumamab and Bendamustine. About 3 years later, a routine scan picked up a compression fracture in my spine. Bone Density scan showed Osteoporosis. All indications pointed to it being a result of the chemo, but they said because of my age, they couldn't say for certain. ( I was in my 60's by then).

fapumpkin profile image
fapumpkin

I was diagnosed with 5 compressed fractured vertebrae (aged 52) at the same time as needing to start my first line of treatment and I was also found to be vitamin D defficent. Unfortunately over the following 6 months I acquired 6 more compression fractures, not from having any accident.

This is a link to some research in relation to fractures risks and CLL

ashpublications.org/blood/a...

and

researchgate.net/publicatio...

You will probably need to go through the numerous different bone density treatments before you will be prescribed Prolia on the NHS. I would ask to have a vitamin D test every six months and try to do as much safe weight baring exercise as possible (walking, not swimming or cycling). I hope you are comfortable and can stabilise your osteoporosis.

Dawson21 profile image
Dawson21 in reply tofapumpkin

Thanks - I started Vitamin D3/K2 a little while back and have yet to see the results of the bone density scan. I am planning to up the walking and maybe some weights too - ambitious perhaps! Has your treatment resulted in any healing of the fractures which I understand happens naturally in "normal" younger people?

fapumpkin profile image
fapumpkin in reply toDawson21

I am about to have a CT bone density scan on Saturday at the Royal National Orthopaedic Hospital, as an ordinary bone density can't be used as I have had 3 verte brae treated with Balloon Kyphoplasty. After 6 years of numerous treatments, first 2 had little effect, I am hoping that my fractures have stabilised, because in the early stages they carried on fracturing more.

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