Sorry your side effects were so bad. I had flu like symptoms for several days which wasn’t as long as the chemo side effects and it’s only every 6 months.So for me, it was worth a few down days.
I would talk to your team as they will have decided whether you need the treatment using the Predict tool as to whether you should stop.
I hope you feel better soon.
Ditto
I felt AWFUL and the pain was horrific
Worse than chemo but have heard the 1st is the worst
Didn’t help that I started Letrozole too and that’s giving me quite a bit of bone/ joint pain too
Hope you’re feeling btr x
Definitely feeling better today but was just a shock at how horrible i felt . Im also taking exemestane tablets which come with there own side effects,just wasnt expecting to feel so poorly with the infusion.
Hope everyone feeling better now till the next one xxxx
That’s positive news @missedna
Hi Marla. I was diagnosed in April 2024 and had a lumpectomy in June 2024 with radiation treatments and now prescribed Letrozole and Alendronate for 5 years. I did take the Alendronate for the first couple of weeks however I have decided not to take it because I don’t like the fact that it has the possibility of burning out my esophagus or stomach. I have severe osteoporosis but will see what the next dexa scan represents. I know this may sound unreasonable to some people but I have enough health issues as it is and do not want to take a medicine that could potentially cause a severe result such as eating out my stomach or esophagus. I hope your doctors make you feel comfortable taking it, I just do not. Take Care
Hi Glenie-thank you for sharing your experience and feelings with me. I understand your concerns completely. When I saw my dentist for the “OK” before starting the tablets, he had mentioned that his mum was taking Alendronic Acid and obviously, I asked him how she’s doing and he said fine. He also reassured me that the side effects are rare, i.e., not everyone will experience dental issues or oesophagus problems. But I understand your decision, because we can’t predict whether we will be one of those who experiences few if any SE’s or not.
xxxx
I have read most of the replies to your post and was horrified by the side effects some people are having - it is amazing how different areas offer different treatment. I was diagnosed with Her2++ BC in 2013 and had chemo, wide excision and radiotherapy, finishing in 2014. They forgot to tell me about DEXA scans and a few years later when I had one, it showed osteopenia. I was given Alendronic Acid tablets week.y but didn’t get in with them. A Dexa scan 3 years later showed osteoporosis and I have been put on Ibandronic Acid - but luckily only one tablet a month and I have not had any side effects. I am on Omeprazole because of a hiatus hernia so perhaps that has helped. (I am trying not to worry about the bad press for those tablets,) My dentist checks my teeth very carefully and if there is to be anything major to be done, I will be given antibiotics. I have a back problem now (from arthritis not osteoporosis) and the consultant says my last DEXA scan shows I am improving and am now back to osteopenia and not osteoporosis, so the tablets do work!
I hope you are ok on whatever you have been prescribed.
Hi Petal, Apologies-I saw your message the day you posted and made a note to myself to reply and then completely forgot! I am so happy to hear that you’re getting on better with Ibandronic Acid and that your latest DEXA shows you’ve moved from Porosis to Penia! I wasn’t even aware that the condition can be reversed or improved. I thought the tablets (or infusions) were to prevent further deterioration-that’s brilliant news.
I think you are so right-different people react differently to the different meds and we all have to be mindful not to “look for” side effects after reading about other people’s SE’s.
I’ve taken 5 Alendronic Acid tablets to date and truthfully, I’ve not felt any different or noticed anything different. I had the all clear from my dentist before starting them (December) and will probably have another check up in April, but to be honest, I’m imagining that any “dental” SE’s will be longer-term-I somehow think that 12 or fewer tablets won’t show much if there are to be any dental SE’s.
It’s really important that we all post “positive” reviews and reports for the others’ benefits, so that we don’t all scaremonger or think “oh god, that will happen to me” when we read about the negatives.
I hope your bone health continues to improve.
May I ask: how often are you havving DEXA scans now?
I was having them every two years before starting the Bisphosphonates (because I had been on Letrozole) but wonder whether I need one annually now due to the Bisphosphonates? I wasn’t advised on this by my GP and it’s a question I need to ask him. I was just wondering how often others have them while on Bisphosphonates. xxxx
Hi @Marla13
I agree we need positive stories to balance those that have side effects. I have a few days of side effects with my zoledronic acid infusions every 6 months. I think that is a small price to pay for the benefits I gain. No issues with dentist so far but there is a longer term risk even after finishing. My dentist asks you to complete a medical for and the questions relates to bisphosphonates ‘Have you ever had…?’.
I was advised by the oncology team that I’m on the treatment for osteoporosis/ osteopenia so don’t need to have Dexa/bone scan. I asked shouldn’t I have one for a baseline to see how my bones are but was told it was not done on the NHS in my trust, probably due to costs. Always worth checking with your medical team to see if it is available in your trust.
Hi Marla13,
When I had my final checkup with the breast surgeon he said to exercise to create bone strength. He suggested an exercise bike (but I don’t have the right space for one in the house) or walking regularly. I have tried to keep that up but I have to admit I don’t walk every day. I last had a Dexa scan in 2023 and I was told the minimum gap between them was 2 years but I have a feeling I had to request the last one with the GP and I don’t know if they are still available now.
As well as the Ibandronic Acid I was prescribed daily AdCal tablets and later, after a blood test, a GP told me to buy extra Vitamin D tablets.
All the best with your treatment.
Hi Petal, thanks very much for clarifying for me the frequency of your DEXA scans. Yes, this is what I thought too-every two years.
And I, too, was advised to walk. I think that’s important for all of us.
Thank you for your good wishes and I wish you the very same! xxx
Hi Naughty Boob:). Thanks for your message. Yes, it seems there is great variation between Trusts as to what they offer. I find that when I speak to my GP practice and mention “my breast cancer team advise…” they are normally quite happy to follow through. I’m glad to hear that you seem to be tolerating the SE’s after each infusion-and so far there are no dental issues…that is really positive news. I hope things continue in the right direction for you and you continue to tolerate well the infusions:). xxx