Forum Discussion
melclarity
8 years agoMember
2 years on Prolia injections have significant affect on Bone Density improvement.
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
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
49 Replies
- RomlaMember@melclarity I have used Prolia since commencing Letrozole as I was already osteoporotic and had had an osteoporotic fracture but have been very impressed by what I have learnt from @Deanne about the Bone Clinic program.
Like you my knowledge is evolving . I understand Prolia Is highly effective for building bone but it seems if we stop the injections bone density gains disappear rapidly . I am concerned we do NOT view Prolia as a TEMPORARY adjunct whilst taking Aromatase Inhibitors.
I remember well sharing exciting news with you about Prolia being used In NY with breast cancer patients on hormone therapy and found to further reduce the risk of recurrence.
In my circumstances ,with existing osteoporotic fractures , Prolia is a lifetime regimen but I am also doing light weights twice weekly to help. However If I had been osteopenic at the outset I would have considered an intensive weight bearing program as a first step. - DeanneMemberWe do learn so much as we go along @melclarity. Yes, as with treatment, everyone has a different situation and what may be one person’s choice for improving bone health is not necessarily the best for another.
As you know, my bone density was at osteoporosis level 3 years into hormone therapy (2 years Tamoxifen, 1 year Femara). My t-score was -3.2, so even worse than yours at -2.9. I had done a lot of walking in my recovery and some resistance training too. But this did not stop my worsening bone density. My oncologist initially suggested Prolia for 2 or 3 years but I was concerned about what would happen when I stopped. As @Romla and others have said, there is a worsening effect when you stop. It also concerned me that Prolia stays in your system for at least 6 months. If I was unlucky and did have side effects then it would be in my system for at least that long.
At only 49 at the time, I was not sure that Prolia was the best choice for me. So I found The Bone Clinic and commenced a research based weightlifting program designed specifically to reverse osteoporosis and improve bone density. I liked that as well as helping my bones to grow stronger naturally, it also targeted balance and movement functionality. They also have a dietician for advice on what to eat or not eat for healthy bones. Teaching me the right way to do everyday tasks to avoid injury (and fractures) was also something that made sense to me.
After 2 years of weightlifting my bone density at the spine has improved by 25%. I am no longer in the osteoporosis zone and have improved not only my bone health but my general health and well-being too. I have continued to take my Femara of course, but no bone medications. My doctors are very happy with my results. I see the weightlifting program as a lifelong program. There are women in their eighties safely doing the program.
It is just like all treatment choices. Find out everything you can about the choices available and then choose what you feel is the right fit for your particular situation. One of the things that can negatively effect bone health, incidentally, is high levels of cortisol from stress. Whatever we choose we should feel good about that choice so as to reduce the anxiety about our bone health. The more you know and understand about the situation the more you can feel comfortable with your choice.
Congratulations on improving your bone bone density and sharing your experience for the benefit of others. You sound very happy with your results and content that this has been the right choice for you. - melclarityMember@Piccme you are most welcome! This is valuable information I agree for everyone here. As with anything there are risks of side effects absolutely. The thing is I didn't have a choice with this treatment plan, chemo put me into a severe osteoporotic state at a serious level. Oral medication was not entertained at all, this was the Oncologists recommendation. He is a very reputable one in Melbourne, I think having traveled this path 7yrs Ive learned an enormous amount. In the first few years I think I was quite ignorant to alot of it...so I know so much more now through not just the Specialists but experience. It is expensive as I have stated in many threads, and most will not meet the criteria on the PBS. I do get a substantial about back from my health fund so it cuts to half. For me, according to my Oncologist, the benefit I have has far outweighed anything else in terms of my recovery, that's the reality. This is about recovery and for a better outcome and longer life.
@Romla I know you supported this treatment for a long time and particularly liked as we know the extra guard it gives protecting against Breast Cancer.
So for many this will be the recommended treatment and sharing my positive experience I think is important. Yes the bone density reduces once you stop, but people are forgetting everything else in play here, in terms of weight bearing and being active for bone density purposes. I am very confident as is my Oncologist, he is not concerned that I will revert back to osteoporosis even after I stop. I will never be fantastic, but I will be in an ok state for the rest of my days.
I've always reserved judgement until I know for myself, irrespective of what I read as they don't always match. Same as treatment, everyone has a different experience. :) - PiccmeMemberThank you @Romla, I will weigh up my options. The injections are an expense to consider. I am currently doing weight baring exercise as well but I am also mindful about the correlation of reduced reoccurrence as @melclarity mentioned. When it comes to this disease sometimes it’s hard to come to a decision so I have found it so useful to hear from others experiences. Thank you all. Sophie
- RomlaMember@Piccme think hard first as you only have osteopenia and a weight bearing program may be a wiser first step.
. Prolia is a lifetime choice as once you stop the injection bone density diminishes rapidly. I have no choice as I am osteoporotic and already had a fracture.I also do simultaneously a weight bearing program twice weekly.
Also on a lesser matter it is $275 every 6 months unless you qualify for the PBS price of $38.To qualify for the PBS price you must be osteoporotic AND either had a fracture OR over 75.
Said with kindness and recognise is your right to choose. - PiccmeMemberHi @melclarity, that is fantastic news and thank you for your post. My GP has prescribed prolia injections for me after recalling my bone density results from my onc (who I haven’t yet seen since the scan). While my spine was just within the normal range my hips are both osteopenic and I experience pain (post chemo) in both but just try to exercise through it. I am on Al’s. I am having dental work up before my first injection but I am now much more encouraged after reading your post. Like others here I was concerned about side effects but as I am already osteopenic and have another 9.5 years to go on Al’s I had to give it serious consideration. Thank you yet again for sharing your experience and also to you @Romla for the extra information. You have eased my mind somewhat. Sophie
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- Lmc1310MemberYou are all very brave. I am trying the Bone Clinic program based in Queensland and hoping it will be enough for me. Their research and results are impressive. I drive 2 hours each way to DeeWhy in Sydney and can now dead lift 35k press 13k and squat 15k. I am much slower than younger women (I'm 66) but I'm getting there. After 12 mths I will have another scan and will hopefully see improvement despite arimidex. I have osteoporosis in arms and osteopenia back and hips. I hate drugs. Best wishes to you all.
- melclarityMember@Chris since diagnosis and due to chemo I've always made sure I do my dental checkups and I can say in 3yrs I've not had any problems at all on Prolia or with dental. Your back would go if you start the injection? not sure I understand? My spine has only improved in T score over 2yrs, so I can't imagine it would go at all. It's designed to improve. xx
- RomlaMemberI’ve had no back issues since starting Prolia but do have a thorough dental check up before starting as you won’t be able to have dental work for 6 months and then basically minor stuff - let your dentist know you are going to use Prolia and you need to have your teeth in great shape before starting.