Hello all - bright and cheery morning and I should be in bed but not sleeping so well at the moment,
I’ve just been diagnosed with secondary breast cancer in my bones and have been prescribed biphosphonates. Having some side effects - nausea, indegestion, heartburn, loss of appetite, some griping stomach pains.
Any advice how to combat these?
I’ve never in my life lost my appetite but I have now and am getting sick of toast! Maybe there’s a silver cloud - maybe I’ll lose a bit of weight?!
Any advice appreciated.
Thanks
Jane
Hi Jane
So sorry you’ve “joined the club no one wants to join”, but it’s good to see you’ve been offered bisphosphonates for your bone mets. I think most of us had those symptoms when we were dx with BC mets – would have been very unusual for our anxieties not to come out somewhere, somehow. I was dx with bone & liver mets in October 2003, and started the tablet bisphosphonate Bondronat (ibandronic acid) immediately – I’d had very bad bone pain at dx, but the Bondronat, and a single blast of rads, took the pain away, and continues to do so 4½ years later, with no side effects from that drug. I’ve also been taking an aromatase inhibitor (for my ER++ BC; two years of Arimidex, then Aromasin), and the tablet chemo Xeloda – had all the side effects on your list and more from the Xeloda, but now on a lower dose, with almost no problems. I’m sure others will post their experiences of IV bisphosphonates, which I haven’t had and I think can have different side effects.
We all have such different responses to our BC and our treatments – whenever I’ve been worried about treatments or side effects, I’ve found it useful to talk to someone who understands both BC mets and our treatments. My advice would be to talk to BCC’s nurse service, or raise your worries with someone in your onc team or a local Macmillan or hospice nurse – it’s never “too early” to make contact with local people who can support you and your family; much better for you than waiting until you’re feeling less well.
Best of luck with your treatments, and do keep coming back to our forum – a font of support and caring.
Marilyn x
Hi Jane
I am posting the link to our factsheet on bisphosphonates which you may find helpful to read and as Marilyn has kindly suggested, please call our helpline as the specialist nurses will be happy to speak to you about the side effects you are experiencing. The helpline number is 0808 800 6000 and it’s open 9am-2pm today and weekdays 9am-5pm.
breastcancercare.org.uk/docs/bisphosphonates__mar_08_0.pdf
Best wishes
Lucy
Hi Jane
I was dx with 2ndaries in April and started a course of chemo and IV biphosphonates at the same time in early May. My biphos are by IV and I have read on here that the effects are often with the 1st treatment but not subsequent. Are you taking tablets or IV? If it’s tablets maybe the first month or so will be bad as your body adapts whereas I’ve had my month’s dose in one go? As I had them with the chemo I really don’t know which drug to blame for my side effects! I had all of the above, except loss of appetite, at different times during the first 7 days but things have calmed down now. I also think if one biphos doesn’t suit you it is possible to change but your onc will probably want to see how this goes for a while before making any changes.
Take care and hope you are feeling better soon.
Nicky x
Hello Jane,
I think Marilyn & Nicky have given you some good advice here. I too have bone mets. Briefly was dx 18 years ago, then with extensive bone mets in 2002. I have been on bisphosphonates (pamidronate) since then, and also herceptin as I am her2+. I wonder if you are being given oral bisphs, rather than intravenous. You do need to be careful to take these as per the instructions. It does sound from your description that the problems are all linked with your digestive tract and for some folk their stomachs can be sensitive to them and you will certainly need to mention this to your onc. For a short period I was switched to the oral ones and they upset my stomach so I was switched back to intravenous. Alternatively you could ask to be prescribed omeprazole or lanzoprazole which will help with the digestive problems. I since discovered that I was having so much trouble with the oral ones because I have a reflux problem so obviously this was being aggravated. Whatever you do, don’t just put up!
dawnhc
xxx
Hi Jane
Sorry to hear about the side effects. Go back to your GP I take lansoprazole but sounds like you need some anti sickness tablets too. My GP wanted to give me some of them but I refused there are only so many tablets you can take. I have my treatment in IV form which is every so many weeks there are side effects with the first one but nowhere near as bad after that. Some people prefer the tablets though but dont suffer speak to your GP.
Not too helpful advice at the moment since its Bank Holiday but phone on Tuesday and tell them its urgent.
I just hope you are feeling better now.