I have read in the press today about problems with people who have been on Biphosphonates for some time and how they can cause cancer in the esophagus. I have been on these drugs for over 10 years…Pamidronate, Zolidronate and now Bondronate. I know these drugs have strengthened my bones but would be interested to hear if anyone is concerned about remaining on them. I have always been less happy with the tablet form Bondronate but am now thinking of contacting my Oncologist to go back on to the IV drugs. Anyone else worried about this? Val
Hi Val
I read that article - the drugs it mentioned were prescribed for osteoporosis and didn’t seem to be the same brand names as the BC ones. I’m not sure if they are a slightly different formulation or just marketed under a different name. I think the heightened risk with the tabs would have to be balanced against the jaw necrosis risks with the IV drugs. I understand there’s a trial at the moment to establish if the tabs are as effective as Zometa.
I’m on Zometa - but my insurance runs out for it soon so may be switched to tabs anyway as I imagine they are a lot cheaper. Is there much difference between the three types you have had?
finty
Hi Val & finty
Yes, I saw the news about this research and got a bit worried – I’ve been on Bondronat for almost seven years now, and it’s worked very well for me (my onc says I should offer to do adverts for Roche!) with no side effects. The research looked at the risk of developing oesophageal (sp?) cancer for people taking 10 or more courses of oral/tablet bisphosphonates (including Boniva, similar drug to Bondronat) for osteoporosis, and did not include anyone taking these tablets for bone mets. Of course, we are on a much higher dose than that taken to prevent/control osteoporosis, but there’s no way of telling if we’re at a much greater risk than those in the study. The risk for those using oral bisphosphonates for osteoporosis seems to increase by only 0.1% (2 out of 1000, rather than 1 out of 1000 in the control sample) – not a huge overwhelming difference.
I definitely feel like a “guinea pig” on this treatment, as no one is looking at the impact of long-term useage, but feel we gain more than we risk – my bone mets are pretty stable, and I don’t need any major pain meds. I wouldn’t want to go onto IV bisphosphonates, as (a) I have such rubbish veins, (b) I believe there’s a higher risk of ONJ (osteonecrosis of the jaw) and (c) my onc reckons it’s better to have the regular & consistent dose offered by daily tablets, rather than the “roller-coaster” effect of monthly injections, which can give us pain that might be confused with progression just before the next dose.
So I’m not stopping my treatment – I’m hoping that if we take our Bondronat as directed (big glass of water, sitting/standing for 60 minutes afterwards), we reduce the risk of oesophageal cancer (fingers crossed!), but I would like to see some research on us “bone mets guinea pigs”.
Marilyn xx
Hi Finty and Marilyn, Thanks for replying because I wondered if I was getting things out of proportion. I thought ( may be wrong) that those taking Biphosphonates for Osteoporosis was a lower dose than what we get as they don’t take it every day as we do. I have been on them for around 10/11 years so it worries me a bit if I am honest. I am going to phone my BC Nurse nest week and ask to to speak to my Oncologist to see what they say. I know what their answer will be already but I am not 100% happy. Of course I feel they have helped me a great deal but not sure I want to take anymore risk with complications. I had to have teeth out and was taken aback when I told my Oncologist I wa shaving a tooth removed. She told me the problems that can arise when having tooth extractions…it came out of the blue…because when I started pamidronate there was no mention of tooth extraction problems…Would like to add that I did have a tooth removed…prety ok with dentists…but it was a very unpleasant procedure. Then I broke another one but my Oncologist and dentist got together and decided to crown the second one. So far I have been ok after the extraction…but the additional news today does cause me some concercern if I am honest. Will let you bvoth know if I hear anything back. Thanks for being there and taking the time to reply. Love to you both, Val
Hi Val
It’s such a dilemma, isn’t it? I hadn’t heard about teeth issues with the tablets - is it the same necrosis problem as with Zometa, or something else? I was also a little panicked when I saw my dentist recently, when he asked whether I wanted to have all my dental care at Guys from now on because of this issue. He then went on to say it was very rare, but apparently some oncs insist on specialist dentistry from the start.
I suppose the other problem is these drugs are relatively new so not much is known about long term exposure.
In any case, I certainly make sure I am brushing my teeth very carefully these days! Fingers crossed - I haven’t needed anything done since I was about 10 years old, but who knows what affect chemo and everything else is having on our teeth.
Love finty x
Hello all,
I take alendronate (alendronic acid) as a preventative for osteoporosis brought on by bc treatment (particularly arimidex). Like you I have to take it with a full glass of water and stay upright for 30 mins afterwards (which i do). Does anyone know if this drug is also a concern? By the way, interesting that you mention tooth extraction problems, Val and finty, because I had a tooth out last year and had some problems too.
Love to all,
Mo
Hi Ladies
I also was rather shocked to see the headline blasted across the papers yesterday about bisphosphonates and aesophageal (sp?) cancer! This seems to have arisen from one study whereas a previous study didn’t notice a marked increase. In fact The Telegraph states that this study contradicts the findings of another study published only weeks ago using the same dataset, so, who knows. Although this is very worrying I think it should also be put in perspective as to our initial risk in the 1st place. If it is, as they say, 1 in 1000 (for people aged 60 to 79) ie 0.1% then this, if this study is correct, would go up to 0.2%. (I’ve just re-read Marilyn’s post and she has already said this - sorry!)
I agree with Marilyn that if they are washed down with plenty of water and we remain upright for the time stated there will hopefully be less risk anyway. It would be interesting also to see if any of the people studied did take their tablets in this fashion.
The other point is the jaw necrosis and that could be far more worrying as all of us on bisphosphonates will be on them for ever yet our teeth can decline at any point! I had to go to the hospital for an extraction last year and the surgeon I saw is in charge of the stats for jaw necrosis. Luckily he has yet to see a case and Thank Goodness I wasn’t his 1st stat although I do have to go back as something isn’t quite right as my jaw bone hasn’t been reabsorbed after the extraction. Something I didn’t know that usually happens as the jaw bone is softer than our other bones under usual circumstances. However he did say that this necrosis issue is a ‘ticking timebomb’ - his words not mine - ie the more people on bisphosphonates (oral or IV) the bigger the likeihood that this becomes a major problem! And as this seems to be a fairly new drug type to treat osteporosis, and bone mets, I don’t suppose they have alot of data to go on to predict or even try to prevent what might happen.
Nicky
Thanks everyone for replying. If I hear anything from my BCN I will let you know. Val
Hi
I am due to have test in oct this year(check bone density). I was put on bisphosphonates two years ago but i felt so ill that i decided to come off of them and wait and see what my body did over the next few years.
I have got thinning of my bones but decided to wait until i really needed to take the drugs.I have not bothered to ask what problems i am lightly to encounter was my bones thin but realise from reading this maybe i should. I do get aches and pains i am now getting like lower back pain, now my left hip has decided to join in as well but have just put it down to meds. I have an appointment next week so will ask questions about this.
I have been on bisphosphonates (note spelling 
) for almost 10 years: alendronic acid tablets for osteoporosis, then IV pamidronate when my bc/bone mets were found, then IV Zometa, and now Bondronat tablets. I’m aware there are risks but I think they are good drugs…
Bondronat and Bonviva are the same drug (ibandronic acid), but at different dose levels. Bonviva is licensed for osteoporosis, a 150-mg tablet once a month, and Bondronat for bone metastases, a 50-mg tablet every day.
Hello mrsblue, haven’t seen any posts from you for a while. Please excuse my huge spelling mistakes. I am caring for my elderly dad who is staying with us while he recovers from a TIA and my OH who has his leg in plaster and using cruthes! By the time I get to sit down I am exhausted and brain dead. haha Fingers not so good either just now. Thanks for adding your post. How are you doing?
HI all
I didn’t see the headlines about Biphosphonates so I haven’t been worrying. However, having been told that I would become incontinent due to my spine mets and eventually unable to walk, I would rather take the tablets!
Sue x
Whoah there, hang on a minute Sue! Who told you that? Were they serious when they said that? Or was it because you were reluctant to take bisphosphonates and they were spelling out what might happen if you didn’t?
Isobel
My experience with these types of drugs are that if you have any sort of sensitivity or gastritis or have a hiatus hernia…then your doc needs to be cautious and perhaps a PPI like Omeprazole to protect the oesophagus and stomach would be helpful…ask him/her.
I had a very bad experience with Bondronat after intravenous Zometa failed( poor access to my veins) but this resolved quickly with Lansoprazole another proton pump inhibitor.
I needed this bisphosphonate for about 9 months as I’d had some bony erosion from an infected lymph node…all ok now- I think…so the drug does work well, but it is very powerful.
Take care.
Just a quickie girls. Have been away for a week. My BC Nurse tried to contact me while I was away. Hope to speak to her this week. She didn’t know anything about it when I spoke to her before I went away but was going to find out more for me. When I hear anything I will let you know. Val
Hi Val
I’ve been away too, Cornwall, going along with hubby who had to go there for work, but a holiday for me!
Thanks for asking… I’ve had a very busy year, mostly “good busy”. Am on exemestane but it might be becoming less effective… Bones seem to be OK though
Hi girls, I did speak to my BC Nurse today and she had read up all she could from the British Medical Journal regarding the new findings and possible side effects. She spoke to a Consultant Oncologist who didn’t seem to think there was any serious concerns. She seems to think there is nothing much to worry about and there is only a slight increased risk.( I think she said 2 in a 1000, rather than 1 in a 1000 but that still sounds rather a lot to me). But the tests they did were not only for people with BC and it is not certain what exactly was taken into consideration (eg were full instructions given to patients etc) But I explained that I was a bit concerned because I have been on these drugs for over 10 years. I also wanted to know if there was LESS risk if you had the drugs by drip rather than tablet form. She is going to make further enquiries with the Pharmacy department and get back to me. I know I don’t want to stop the drug as it is so important that my bones do not break but would like to know more as it does concern me a bit. I was considering going back to Zolidronate if the tablets are the problem. Hope you follow all this. Will get back if any new information.Any of your points of view would be good to hear. Thanks Val
Hi Val, Isobel, mrsblue and all
When I was told that I needed to take the Biphosphonates I was offered either by IV or tablet and I was asked if I would participate in a trial about what worked best - tablets or IV? However, my veins are poor and I as I don’t have any other ongoing treatment by IV (eg Herceptin) I decided that I would rather take the tablets at home and have fewer trips to the hospital.
With regard to what I was told at my secondary diagnosis Isobel, no I wasn’t being ‘scared’ into taking the Biphosphonates it was her description of what would eventually happen to me as the cancer progressed through my system. I have mets in my lower spine, and in the middle, and it was the nerve damage to the lower back that she was most concerned about. It was a tremendous shock, as you all know, to be told that I could die within twelve months plus the possible loss of control of my bodily functions. I actually came away from the appointment feeling very angry and felt that she gave me very little hope. However, reading things here on the Forum I realised that it needn’t necessarily all happen so quickly and I felt more optimistic - still that optimisim that it wouldn’t happen to me!
I am not sure if my Dr deliberately uses reverse psychology or what but I realise now that by giving me the worst case scenario I feel that every day, week, month and by the 26th October another year, is a bonus.
Sue x
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