Anyone taking biophosphonates?

I’ve been through treatment for bilateral breast cancer. One side was a recurrence after 11 years, 35mm lobular cancer and I had a mastectomy. The other side was a 26mm ductal cancer with the sentinel node, but not the second, affected. I had a lumpectomy and am just completing radiotherapy. Both were strongly ER positive and I started letrozole about 6 weeks ago, so far with no apparent side effects. When I go back to see the oncologist for my follow up, he wants to discuss biophosphonates with me. I had a DEXA bone density scan about 3 weeks ago. He suggested I did a bit of research myself.

Has anyone been advised to have these? I am reluctant to take anything unless I feel the benefits definitely outweigh the risks/side effects. It looks as though there are potentially unpleasant side effects, particularly when it comes to dental treatment. At 66, who can say when I might need abscess treatment or extractions etc, which could be complicated if I’m on biophosphonates.

I would be grateful for anyone’s feedback or experience of biophosphonates please

Hi SueLSE,

 

Just seen your post,  im from the June chemo2019 thread.

 

i finished my chemo treatment 5 weeks ago for Triple Negative BC,  so different to you.

This is also my second lot,  had TN back in 2017.

re biophosphonates  -  i am having Zoledronic Acid IV infusions every 6 months ( already had one.  Second is in January 2020) for the next 2 years.   Felt bit rough for a few days but dont know if it was this or the chemo.  

My consultant said inher opinion it was a good idea to strengthen my bones ( dont have any problems now ) but can also help to prevent any recurrence, by the way i’m 69.

so i’m going with it…  mini mad xx ??

 

Hi, I’m also having zolendronic acid. I’ve had a primary on each side and this year a recurrence in the nodes. During chemo my consultant said this is being more widely offered as they think it helps reduce risk of recurrence in the bones, and I’m happy to go for it. I had doses with 3rd and 6th chemo, and felt no worse, and now will have it every 6 months for 3 years. My understanding is that dental treatment is still possible, they just need to be more careful. I found a bit more comments about bisphosphonates under “targeted therapies” and in among the chemo threads. Good luck whatever you decide, (and I’m 65!).  

Hi Sue

 

I completed my chemotherapy in April and radiotherapy in June. In July I had my second zometa infusion, as they so sweetly call it. I can’t swallow big tablets so the 20-minute drip was the only option. I experienced a couple of days of fatigue but not the flu-like symptoms they warn you about. I’m 68 btw, initially with heavily node-positive bc but no spread beyond. My tumours were ER6/8 and ER8/8. Last week, I saw a cancer-specialist dentist who is attached to my practice as I was concerned about the treatment’s possible side effects and he was very reassuring. He explained much more clearly than the oncs that the risk of jawbone damage only occurs when someone has a dental extraction so a dentist would aim to do root canal work. An unavoidable extraction (not common nowadays) would be done in hospital as a precaution. He explained exactly how the risk arises (to do with how the bone heals after an extraction) and said it is very rare - he hasn’t had a patient experience it - so what I need to do is maintain good oral hygiene, visit the dentist twice a year or sooner if anything goes amiss.

 

Biphosphonates are already prescribed for women with osteoporosis, taken as a weekly tablet - so they face the risk. My bone scan was clear but, since bone marrow is the area of choice for rogue bc cells, it makes sense to ensure my bones are as strong as possible to reduce that risk. As I was already diagnosed with osteopoenia (the precursor to osteoporosis) it seemed a good 2-for-1 option to me. I have 10 years of anastrozole ahead and that inhibits the oestrogen required for good bone health, so that’s another tick in favour of the treatment. I’m not 100% happy about it as it’s feels like I can’t move on from chemo, but I’d be even less happy about a recurrence so I’ll do what they suggest to avoid it. So for me, the benefits outweigh the risks (I have a dental phobia btw so the mere idea of necrosis of the jaw is anathema).

 

Why not check with your dental practice and see if they have or know of a dentist with this specialism - it’s an additional expense but I thought it was worth the consultation fee to get the reassurance that I’d made the right choice. Or contact your nearest dental hospital and ask if there’s someone you could see. My bc nurse warned me from the start about Dr Google, so I’m surprised you were told to do your own research - the lay mind tends to go into red alert at most of what’s there!

 

Hope you find enough information to make an informed decision for you. Good luck.

 

Jan

You can get a helpful leaflet from this site, free of charge. Excellent service!

4 years after my cancer treatment (mastectomy, chemo and 5 years on Anastrazole) I found I had Osteoporosis and had 4 spinal fractures at L1, L2, L3 and T12. :womansad: After a few months on Aendronate I was changed to Zoledronate. I’m on a drugs holiday now. Although my fractures are supposed to have healed, they are still painful. I still take AdcalD3 and have Fentanyl Patches and Oramorph for the pain. But I don’t yet know how long my drug holiday will be, or what treatment they will decide for me when I start again.

Hi

I had the Zometa drip every six months for 3 years as did my Mum who is 84.  I didn’t have any side effects but my mum has nausea from the calcium she had to take.

 

I was and am prepared to do anything to try and make sure it doesn’t come back ??

Hi my lovely, 

I have a bisphosphonate infusion every 6 months for 3vyears, then done for ever. Ask about this treatment. It’s better than taking tablets and I was given to understand more effective. 

Hope this helps. Good luck x

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