Those on bisphosphanates....

Hi Daisyjake,

I’ve taken ibandronic acid for a year. I take one per day, first thing in the morning. It does mean that I can’t have coffee first thing, but I’ve got used to it. I think I’m taking them for three years. I also take the adcal tablets every day (vitamin D and calcium). I asked my oncologist about the weekly tablet when I was preparing to go back to work, but he said that in his opinion, the daily tablets are more effective, so try to stick with it and I have. I haven’t had any problems with it. I see my dentist every 4 months just to make sure everything is OK. That was my choice though, she was happy to see me every 6 months.  When I was researching bisphosphates, I found several articles that said that they are very effective in preventing bone mets and so I thought that I might as well. 

Maybe worth a try and see how you get on with them?

Take care,

Sarah x

Sarah1111 Sarah, thanks so much; I am being given 3 months so will give it a bash.  I commute to London twice a week from Peak District so this will be a little tough to handle! 

Debs x 

Hi Sarah1111

Thank you for this, as I start taking ibandronic acid soon and will be taking them for three years, with vitamin D. Were you advised to take the calcium?

It is early days for me but had a full body bone scan following a second grade 2 cancer in the same breast, so intend to stick with them no matter what, even although my scan was clear.

Thanks

Jan

Hi daisyjake,

I honestly think you learn to adapt to whatever is needed to keep you as fit and well as possible.

I’ve been on Treatment for osteoporosis for several years now, began with Adcal D3 but after a further Dexa scan I was advised to begin Alendronic Acid once a week.

i never managed to cope with the full dose ofAdcal due to indigestion at night but manage to maintain a fairly calcium rich diet and so investigated D3 alone. I found a source at Costco and my GP advised on dosage when I showed him.

I've adapted to a routine managing this midweek, and simply avoid my coffee for the first little while and sit to write my journal! 

I have been told to continue at least till I finish Letrozole, but my bc surgeon advised that I might consider swapping to Tamoxifen (I’ve been on Letrozole just over 2 years now) as that doesn’t deplete bone so much. I’m considering this. Actually got the letter (rather late) today.

my next Dexa is in 2 1/2 years (3 yearly Now due to the Letrozole) 

hugs xxx

Hi daisyjake

my story on my profile if you want to read .

My continuing treatment is Herceptin three weekly injections x 18 alongside zoledronic Bisphosphonate infusion every 6 months for at least three year. Second infusion due in May .

I was never offered daily or weekly and after hearing about upright I'm so pleased to have a fifteen minute infusion every 6 month .

I'm also on Adcal x2 a day . Which is about to be reduced because my calcium count is too high . I started of high with a score of 50 then went to 71 not sure what it is now just had bloods done with view to dosage being one every other day .

Hope this is useful 

Margaret x

Thanks so much all, I could cope with the weekly or the infusions but the daily is going to take some swallowing - if you excuse the pun.  Trust won’t let me have infusions as I am HER- so no ongoing Herceptin. 

Will plough on & discuss with GP x 

Hi, I have Zoledronic acid every 6 months. I have had 3 doses and was originally told I would get 6 ie 3 years. My private medical insurance company are paying. 

My oncologist has now said that there is emerging evidence that 5 years worth of treatment may be beneficial. My insurance company will not pay for the further 4 sessions but I will probably pay myself. If evidence becomes available in the meantime I can raise it with them.

I take vit d....but have done for years. I have no issues with the infusion and am not aware of any side effects.

I am classified as high risk so maybe that has influenced decision by oncologist.

Hi,

I  asked for mine to be changed to Infusions as I've had some awful reflux and discomfort in my windpipe area, I put it down to the Bisphosphonates, my Consultant wasn't too happy, he said "well you've tolerated it this long", I've been on it about 16 months, fortunately my BC Nurse stepped in and he reluctantly agreed!  But now due to the Coronavirus it can't go ahead.  My Husband has just been prescribed the weekly tablet, which I didn't know was available, so I might ask about that.  The problem is with the daily one, who remembers to stay upright for 30 to 60 minutes, I forget and start loading the dishwasher, or bending to get dressed etc plus in winter no breakfast before leaving home!  I am private patient. 

I think the Drs are all touchy at present! 

I understand they are all under immense pressure at the moment but mine was barely civil today, he talked over me & kept cutting me off mid-flow, the joys of non-personal telephone consultations.  

peterawake exactly this, it will be more than a minor inconvenience!  I will look at accessing privately too. 

D x 

Hi I’m also on the Zoledronic Acid every 6 months for 5 years but only take the Adcal for 28 days after the infusion. Strange how things are so different for everyone.