Bone loss, due to any CLL treatments? - CLL Support

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Bone loss, due to any CLL treatments?

MistyMountainHop profile image

This is not strictly related to CLL.

My sister has had chemotherapy for breast cancer, which caused bone loss/reduction of bone density, especially in the jaw area.

Are there any CLL treatments that cause bone loss?

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MistyMountainHop profile image
MistyMountainHop
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20 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi MistyMountainHop,

We have had many discussions on bone loss with CLL, I don't recall that any specific treatment was connected to bone loss.

But CLL itself seems to be associated with faster than normal joint degradation.

As with many things in CLL, there is not a clinically proven cause, and some think it may be yet another autoimmune issue caused by CLL's unbalancing our complex immune system.

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You will find some past discussions in the box on this page labeled: "Related Posts

*CLL and bone loss

*CLL and Bone Pain - any one had Radiotherapy?

*CLL and bone loss

*Bone pain and CLL. Are they related?

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And here are the 350 past postings that mention bone loss:

healthunlocked.com/cllsuppo...

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Len

MistyMountainHop profile image
MistyMountainHop in reply to lankisterguy

Thanks Len.

I should have looked. I'll slap my own legs....🌞

xv750 profile image
xv750 in reply to lankisterguy

Sorry I do not have any knowledge of this. According to the drug co. Brunkisa is not a chemo pill.

lankisterguy profile image
lankisterguyVolunteer in reply to xv750

Hi xv750,

I'm unclear about your comment.

Brukinsa / zanubrutinib is one of our modern targeted treatments and not considered Chemotherapy by most doctors. mayoclinic.org/tests-proced...

en.wikipedia.org/wiki/Chemo...

SNIP: "The term chemotherapy has come to connote non-specific usage of intracellular poisons to inhibit mitosis (cell division) or induce DNA damage, which is why inhibition of DNA repair can augment chemotherapy.[3] The connotation of the word chemotherapy excludes more selective agents that block extracellular signals (signal transduction). The development of therapies with specific molecular or genetic targets, which inhibit growth-promoting signals from classic endocrine hormones (primarily estrogens for breast cancer and androgens for prostate cancer) are now called hormonal therapies. By contrast, other inhibitions of growth-signals like those associated with receptor tyrosine kinases are referred to as targeted therapy."

My reply - which you responded to asserted that unlike the poster's sister who did have Chemotherapy and bone loss, we do not have any specific evidence that our non Chemo targeted therapies cause bone loss. But CLL itself or immune complications may cause bone loss in some CLL patients.

Len

xv750 profile image
xv750 in reply to lankisterguy

That is what I posted. Not a chemo drug.

mrsjsmith profile image
mrsjsmith

Not strictly a CLL treatment but longterm use of Steroids can cause bone loss.

Colette

MistyMountainHop profile image
MistyMountainHop in reply to mrsjsmith

Thank you Colette. I didn't know that.......I don't know much of late. I think the rain has seeped into my head😵‍💫

mrsjsmith profile image
mrsjsmith

My head is full of lots of strange facts, some useful and some not. 🙄

LeoPa profile image
LeoPa

I wonder weather bone loss can be a consequence of insufficient calcium consumption. The bones are the body's calcium reservoir. When for whatever reason the body needs a lot of calcium and not enough of it is consumed it takes it from the bones. So to avoid bone loss, I think it might help to consume sufficient amounts of calcium and couple it with vitamin D and K2 supplementation if these two are not in the optimal range. These two drive the calcium into the bones and teeth. Both are necessary to do the job. And of course resistance training helps to strengthen the bones in the presence of sufficient calcium, D and K2

MistyMountainHop profile image
MistyMountainHop in reply to LeoPa

D3 + K2- Mk7 together is supposed to put the calcium in the bones and not in the soft tissue.

I'm not advocating this..... that's just what I have seen online.

LeoPa profile image
LeoPa in reply to MistyMountainHop

Mk4 is also ok.

BeckyLUSA profile image
BeckyLUSA

This is something I have always wondered about…CLL is a disease that can be in our bone marrow. Wouldn’t it make sense that our bone strength/density be affected? Is this a simplistic question?

MistyMountainHop profile image
MistyMountainHop in reply to BeckyLUSA

It's a good and relevant question to ask..... especially when you add aging into the bargain.

SusanBo profile image
SusanBo

My daughter's oncologist put her on Prolia after her chemo - it helps with the bone loss but also helps to prevent mets to the bone as per her onc.

Deilginis profile image
Deilginis in reply to SusanBo

Make sure to warn her she must not be taken off it without an alternative supplement instead. Otherwise she’s on a big risk of (in particular) multiple compression fractures of the vertebrae. I found this out the very hard way of actual experience. She may also want to see an endocrinologist specialising in bone. This is no reflection on her onc, just that oncs specialise in oncology and endocrinologists (particularly those focussing specifically on bone) are the ones with the real depth of knowledge on bone. I hope all goes very well for your daughter.

DoriZett profile image
DoriZett

I also struggle with acid reflux/GERD. Long term treatment with PPI's lead to bone loss and many of a certain age - struggle with balancing reflux and it's treatments. Oh! Aging!!!😉

MistyMountainHop profile image
MistyMountainHop in reply to DoriZett

But, we are still here......🌞

DoriZett profile image
DoriZett in reply to MistyMountainHop

Beats the alternative! 😁

leopardo profile image
leopardo

Good morning Misty Mountain top!

In 2002 I was diagnosed with CLL and more recently in 2019, with non-Hodgkin’s disease. So my situation/cancers are not quite the same as yours. Please bear that in mind

Since the early 2000’s l’ve have had CHOP chemotherapy, then in 2019, ABVD chemotherapy, along with COPP chemotherapy and a local dose of radiation to finally knock out the lymphoma. You can easily see what the specific drugs are behind these acronyms by going online.

Right now I am in remission from any of these cancers and I am fairly optimistic about the future - still.

But I must tell you that the chemos in particular have permanently knocked out my sense of taste and smell and have caused heart damage. I am currently being treated for the heart disease which with heart drugs is a pain in the butt. If I have any advice to give here, I guess it’s a warning: make sure that your haematologist explains you quite clearly the risks of having chemo. Because frankly, on some days, I have felt that it wasn’t worth it. Quality of life has certainly been affected even though I am in remission. And the chronic fatigue is awful!

But let’s be optimistic. It has been over 20 years since I was first diagnosed with a form of the big C. And I am still here! I do see my haematologist-oncologist at least once every eight or nine months. In fact he may be getting tired of me. I think all in all, the Odette Cancer Centre of Sunnybrook Hospital in Toronto Ontario had taken pretty good care of me. Except I do have a sour taste in my mouth so to speak because of the cited damage that the chemo has caused.

More pertinent to your case perhaps is the fact that my wife was diagnosed with breast cancer in one breast 24 years ago. It came back again about five years after that, same area. Altogether she has had radiation twice and has had a mastectomy on the aggrieved breast. Her complaints now are more related to age than anything else; she is in her early 80s.

You be brave and positive! Modern medicine keeps evolving almost each month. Just be aware that whatever you agree to probably has some kind of side effects which are not always welcome.

Leopardo

MistyMountainHop profile image
MistyMountainHop in reply to leopardo

I'm glad that you still here to educate me on these matters.

About a year after my sister had chemo', she was scanned. It was discovered that she had a faulty heart valve (mitral?). She under went five hours of heart surgery, she now has new valve, courtesy of cow.

She's on holiday in Egypt at this moment.

I wish you well..🌞

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