Just wanted to offer some reassurance and positive news to women starting AI treatment . Five years down the line of taking daily Letrozole and now 66 just had the results of my second DEXA scan and bone density is ‘reassuringly normal ‘ which is massive relief . I know DEXA doesn’t diagnose spread but it can indicate cancer issues so great to know no osteoporosis etc . Particularly reassuring as I had sciatica a few months ago and feared the worst . Since then taken cod liver oil and been more vigilant with daily Vitamin D . Also walk at least a couple of miles a day which to be honest is I think the best therapy if you can manage it . Appreciate not everyone can . It also helps with Lymphodoema. So five more years of Letrozole to go and I plan to carry on doing my best to keep active and healthy . Good luck all
Great news, thank you for sharing =)
Thats helpful, thanks.
I can see that you have started cod liver oil and vitamin D. Is there anything particular you’ve done in the past five years or were you doing these things all the way through?
Been on Vitamin D 5 years as prescribed cod liver oil recent as developed sciatica few months ago but it’s mostly gone . That’s it apart from Letrozole which have till 2029 . I walk a fair bit don’t drive try and eat healthy and have constant battle with weight but try my best . Recommend low carb diet for energy and weight control - don’t always stick to it !
Thank you for sharing, I’m awaiting my second mamogram since my diagnosis in 2022. Also taking letrozole, Cal D3 and Alendronic, I also have osteoporosis, have taken cod liver oil for years and like you walk a good 10000 steps everyday with my dog, there is light at the end of the tunnel. X
I have been on Letrozole, Adcal calcium and Alendronic Acid tablets for over 2 years and had a Dexa scan last year which showed I had Osteoporosis in spine and hips, but is particularly bad in the spine. I was referred to a clinic and had infusion to replace the Alendronic Acid tablets. The Consultant said that probably I had Osteoporosis before starting Letrozole but as I did not have a Dexa scan at the start of Letrozole treatment they don’t know state of my bones at that time but admitted that these tablets would have made the condition worse. I had been complaining of back pain for quite some time but my GP said I was not at risk of Osteoporosis as I was a non smoker and my weight was ok, but how wrong she was. I was at risk because of the Letrozole tablets. Not everyone taking Letrozole will get Osteoporosis but I was unlucky. I feel let down but as they only have one Dexa scanner to cover the whole of North Wales, there is a long waiting list.
Hi , I just read this and want some advice. I had a low intermediate oncotype of 17 and am 42. My oncologist strongly didn’t want me to have chemo but did recommend ovarian suppression and Tamoxifen with the possibility of switching to an AI. I really wanted to switch to am AI as the prevention of recurrence is supposed to be slightly higher. However, I had my Dexa scan and it came back with me having ostepeina. I literally can’t believe it I as I am premenopausal, I do load bearing strength exercises three times a week and walk an average of 14,000 steps a day ( and have done this pretty much all of my adult life). There is also no family history of osteoperosis and I do take vitamin D. I know there are worse situations but it is frustrating. Now my risk of osteoporosis is so much higher , I am not sure what to do about the AI. I have a 6 and 9 year old so desperately want to reduce my recurrence risk as much as possible. I am having zometa infusions. The oncologist has it is ultimately my decision.
Hi eb13, I was diagnosed last year at age 46, Oncotype 17 so no chemo but ovarian suppression & letrozole. I had a Dexa last year that came out normal and another scan last month that shows osteopenia! This has really shook me as I am questioning “quality over quantity” as I have struggled with several other side effects anyway. I am fairly active and walk, run & strength train regularly with clean eating… I am seriously considering switching to Tamoxifen.
Thank you for commenting on my post. It sounds like you are in a very similar situation especially given we had the same oncotype. It is really hard to decide what is best. My oncologist seems to be of the mind that it is best for me to stay on Tamoxifen and Zoladex and consider switching to an AI in a couple of years if the next Dexa doesn’t show things are worse. In my case my Dexa scan was firmly in the ostepeina range so I can see this probably makes sense but I do feel frustrated as prior to this I had made my mind up to switch from Tamoxifen to an AI. Can I ask if you have a Zometa infusion?