2 years on Prolia injections have significant affect on Bone Density improvement.

melclarity

Hi Ladies,

I love the sharing of information as I think it's valuable to everyone here. I had my Oncologist visit yesterday and received my Bone Density results. Compared to 2016 there is a marked improvement in my TScore in the Lumbar Spine it was -2.9 and now is -2.2 with a Z-score that was -2.4 and now is -1.6. The Oncologist said it is an incredible improvement and indicative of the Prolia injections. In 2016 my Bone Density post Chemo was deemed Osteoporotic. I don't do weight bearing exercises but I know the benefit of it. I do exercise and am active in my job however. I am super happy to be out of high risk, whilst I'll never be fantastic, alot has to do with genetics he said, he's really happy with where it is. So I will have 1 more year on Prolia which I can add....has zero symptoms  

As a result of this after 3yrs I am now pushed to yearly Oncology visits woohoo!!!!!! 

My Oncologist in 1997 undertook a 3-year breast and lung cancer clinical research Fellowship at the Royal Marsden Hospital in London, working with Professor Ian Smith.

He is a member of the Australian New Zealand Breast Cancer Trials Group, and until recently was the head of the Breast Trials Group of Cancer Trials Australia. He has authored articles appearing in journals such as the Journal of Clinical Oncology, Annals of Oncology, The Breast and British Journal of Cancer.

He also said in terms of risk of recurrence, it is solely based on an individuals diagnosis, pathology/histology and genetics only that will determine this irrespective of anything else. That it has been OVERDONE in terms of the message to reduce risk together with stats. 

M x

Afraser

Terrific result. I am considering Prolia (I do not have osteoporosis but am osteopoenic) but am not thrilled about possible side effects. Particularly clotting and joint pain. Have you had side effects?

melclarity

@Afraser I am also now classed osteopenic to be honest I didnt notice ANY side effects at all. I am on an AI though, so have a bit of joint pain but also feel thats more to do with menopause and chemo. Its a quick injection (expensive) but my private health cover give me a a bit back, its worth it though absolutely. x

Afraser

Thanks. I am 5 years on Letrozole with no joint pain and not keen to start having it! More of a worry is that Prolia may counteract the blood thinners I take. Decisions, decisions! My good oncologist agrees that balancing out continuing for 5 more years on Letrozole with possible bone impact is not an easy answer.

Sister

Great news @melclarity!

melclarity

Hmmm well i think you need to be guided by your Onc and GP in terms of interaction with blood thinners. Depends on the impact currently on your bone density. Hugs x

primek

Great news Mel. The unfortunate thing with prolia is when you stop having it your bones decline again  fairly rapidly. Apparently the oral tablets which have a slightly different mechanism at least result in some lasting bone staying. So I would suggest looking at some weight bearing exercise if you want to continue to build bone strength. Your exercise physiologist can set you a simple routine that will help. 

melclarity

@Primek thanks, hmmm he didnt say that at all about Prolia that it would decline dramatically at cessation. By the time I finish that though I'll be nearly finished my AI, so he absolutely isn't concerned at all about my bone density from here. I finished with my Exercise Physiologist in December most of my work is building cardio and stretching as I suffer full body cramping particularly throughout my torso front and back. x 

Afraser

@primek, that's what I understand too, so I am reluctant to suffer side effects for a year or two, have to stop, for no net gain. I am leaning towards keeping up weights, gym work and supplements and see how I go. My last bone density tests don't help, parts are slightly worse but parts are significantly better. It's a mystery!

melclarity

To be honest if I was osteopenic I dont think Id do the injections, but my bones were severely osteoporotic thanks to chemo. I've also done alot of physical work so the improvement is not just the Prolia. I also was never offered oral form at all by my Oncologist. He certainly has a long history and expertise in Oncology. 

His primary breast cancer interests focus on endocrine therapy and mechanisms of resistance, and treatment-induced bone loss and bone metastases. His lung cancer interests focus on targeted therapies, predictors of response/survival, and small cell lung cancer. He is actively involved in clinical research, and is the principal investigator in both local and international studies. He is currently a consultant medical oncologist in both the breast and lung cancer units at the Peter MacCallum Cancer Centre. This is only part of what he does. 

primek

I suppose the oncologist focus is only on your health whilst under treatment. As we all plan to live a full, long life looking beyond that time is important.

nikkid

You go @melclarity - great news!!!! xxxx

melclarity

Thanks @Nikkid the Oncologist was really happy over it. I thought it may have been of interest as Prolia has been a topic in various threads @Romla and @Chris. 

@Primek absolutely, as I said Prolia is NOT the only reason for the improvement. I worked with an Exercise Physiologist and am very active. 

Prolia (Denosumab)

A twice-a-year injection, denosumab is a monoclonal antibody — a biologic drug. It turns off the stimulus for the type of cells that break down bone, osteoclasts, which decreases bone loss and prevents broken bones.

Pros: It’s highly effective in treating osteoporosis. According to the National Osteoporosis Foundation (NOF), the drug helped lower new spine fractures by 68 percent and hip fractures by 40 percent. Non-spine fracture incidence fell 20 percent over three years.

Cons: Denosumab could cause your calcium level to go down, so it’s important to get your level checked through a blood test. If you have a low calcium level, called hypocalcemia, you would not take this drug.

There are pros and cons for all treatment, depending on an individual situation as to what suits best, I was really happy with the improvement and wanted to share..

Romla

I have been on Prolia since 8/17 and am also on the Aromatase Inhibitor Letrozole/ Femara. At the outset I had already been diagnosed with osteoporosis and had had an osteoporotic fracture - Prolia is thus a lifetime treatment for me. 

I was very very worried about this treatment as had read a lot on linethat was not encouraging. I spoke to a lot of friends and my longtime GP all of whom said my fears were baseless in their experience and in my case I have found it to be true.

One positive I have read is that Prolia in conjunction with an AI has been found to further reduce recurrence risk as they are synergistic.This research was delivered at the 2016 Breast Cancer Interntaional Congress in Austin Texas and can be read about online. I have read In NYC it is given to breast cancer patients who are not osteoporotic for this reason alone.

Prolia does exit the system quickly after 6 months but that allows a small window wherein I have dental treatment which is very difficult with bisphosphonate tablets.I have had bisphosphonate tablets twice some years ago for roughly 3 months each time. the first time I developed an ulcer as you must be upright for a minimum of 30 minutes after taking the tablet - sitting up in bed is inadequate . I ceased the tablets and recommenced the following year for about 3months. I needed an extraction and found it very difficult to find a dentist or dental specialist who would help me once they learned I had taken Bisphosphonates.Bisphonates can cause Osteonecrosis of the Jaw(ONJ) with major dental like root canals , extrcati9ns etc. Bisphosphonates unlike Prolia stay in the system indefinitely ie Prolia exits your system entirely after 6 months but Bisphosphonates stay in your body even after you cease taking them so the risk of ONJ is indefinite.I was lucky to meet Professor Goss of our dental school who agreed to help me but only after a crosslaps test established my bone was still turning over - I believe if I had been on Bisphosphonates for a lengthier period that would not have been the case.

I ceased Bisphosphonates after this episode .I continued on with Caltrate based on the Osteoporosis Australia clinical guidelines at the time for my circumstances. I discovered only recently they changed Nov 2017 and in particular they are now concerned about calcium and it’s impact on the heart. The document I mention is on line and lengthy but has a table of contents to enable quick selection of topics - there is a section for those who have had breast cancer too - I highly recommend a read.

Hope this helps and happy to answer questions within my experience.

Romla

PS I can’t comment on bone density improvement as have yet to have my bone density checked since starting Prolia. I can however report my Osteoporosis was picked up from backache I had sitting at length on the bus coming home from work.I have no lower back pain now but have sore ribs where the fracture occurred and radiotherapy was administered.

melclarity

@Romla yes my Oncologist also said from the onset that Prolia adds extra protection against BC, they didn't quite understand but it does. Yes one complication can be as you said Osteonecrosis of the Jaw(ONJ)....Osteonecrosis of the jaw is another side effect of Prolia, but it's extremely rare (about one in a thousand). After a 10-year study, six of 4,550 participants developed the disease, according to results published in 2013.

I didnt have osteoporosis prior to chemo, I did suffer backache post though, my backache also has gone and made sense with the spine results.  

I have found the added benefit of Prolia far outweighs all else in my 2yr experience with zero side effects, I'd recommend anyone who is recommended this by their Oncologist...it works with added benefits.