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Anyone taking biophosphonates?

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Re: Anyone taking biophosphonates?

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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Re: Anyone taking biophosphonates?

Oops meant precious time in bed! I will add that my husband has also suffered from ill health and life can get a bit tricky at times with the stress of emergency visits to hospital for him. We try to make the most of our life together and that time in the mornings is one of our most precious!

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Re: Anyone taking biophosphonates?

Hi, I totally agree with you re the pleasure of a cuppa in bed ( with biscuits! ) in the morning. I tried alendronic acid tablets for 4 weeks , they made me ill so now I have recently had my fourth zolendronic acid infusion. I was told that when I finish the 6 infusions I may go back on to tablets. I have accepted all other treatments, chemo , Letrozole etc but am not prepared to go back on tablets which interfere with my previous time in bed in the mornings! 

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Re: Anyone taking biophosphonates?

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 😮😮

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Re: Anyone taking biophosphonates?

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. Woman Sad 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.

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Re: Anyone taking biophosphonates?

Hi all

I saw the oncologist today, 6 weeks after completing radiotherapy, and feeling fit and life back to ‘normal’. She has prescribed me Ibandronic acid as a biophosphonate. It’s not one of the two mentioned on this site, and she did mumble a reason for that. I know she said they did not have the capacity to give me the 6 monthly intravenous option, and then she said that this one was ‘off grid’ or something like that. But I cannot face the thought of taking a daily tablet on an empty stomach, and keeping upright for an hour. One of the biggest pleasures in being retired is having at least one, and usually two, cups of tea in bed first thing, especially when my husband gets it! And she also said that it only Increased my life expectancy for the next 10 years by 3%. It was on a 3% basis that I declined chemo. Researching ibandronic acid, it seems to indicate that it is usually given for women whose cancer has already spread to the bones, which mine as far as can be known, has not. Also my DEXA scan showed no osteoporosis, just osteopenia. So I am certainly not inclined to take it, she didn’t push me to it, but I did feel she thought I should be on it. I’ve had no side effects at all after 3 months on letrozole. Anyone any thoughts?

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Re: Anyone taking biophosphonates?

Thanks Joemic, I’ve just responded to your post in radiotherapy too! Thanks everyone else too for your responses. I see that all of you who’ve responded so far have been through chemo. I was offered chemo, but declined, as statistically there was only a 3% chance it would be of any benefit for me.....as I said in my post, I’ve got to know the benefits outweigh the risks. I finished radiotherapy yesterday, and I don’t see the onc again until 14th November, so I’ve got a few weeks to decide on biophosphonates, and also to know the results of my bone density scan, as to how strong my bones are currently. As I’m a second time around person (11 years ago, right breast, had mastectomy this time for right, and lumpectomy left) and this time it was bilateral, I guess I must be high risk of a recurrence, so anything which lowers that risk, I know I must seriously consider.

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Re: Anyone taking biophosphonates?

Hi SueSLE

I am taking bisphosphonates namely Ibandronate acid tablets. I was initially having Zometa infusion every 2nd chemo but was put on the tablets after chemo finished. I have been taking them for 6 weeks now as well as Letrozole - I have had NO side effects from either of them.

 

With the tablets you have to be sure you remain upright - sitting or standing for one hour after taking them to ensure they have gone down properly as they can irritate the oesophagus, you need to take them with 200mls of water and can't eat or drink for 30 mins following. It sounds complicated but you soon get in the swing of it, I get up clean my teeth then take the tablet, by the time I've finished getting washed, dressed etc I can then eat and drink. To be fair it's not much different to my normal routine so haven't found it an issue.

 

To minimise the risk of jaw problems if dental extraction is required I would have to stop the tablets for 6 weeks have the treatment then restart them 6 weeks after the treatment - which to be fair is an option you don't get with the infusion. I can only go on my experiences from the last 6 weeks but so far so good, if I did start to experience any issues I would contact my Onc.

 

I am 53 and was advised to take them as they have been shown to help prevent recurrence in the bones and as Letrozole can weaken them I figured any weakness would be less so if I took the bisphosphonate. It is never easy making decisions regarding treatments but we can only do what we think is best for us.

 

I hope this helps you a little and I wish you the best with whatever decision you make.

 

Joemic x 

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Re: Anyone taking biophosphonates?

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

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Re: Anyone taking biophosphonates?

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

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Re: Anyone taking biophosphonates?

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!).  

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Re: Anyone taking biophosphonates?

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 💖💖

 

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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