I started these around a week ago and was wondering if anyone else on here was taking them?
I’ve read that people on bisphosphonates (sp?) that are IV, get a feeling of having a flu and have ‘burning bones’ feelings.
ALL my bones ache at present (have secondaries in my bones - my spine and left pelvic region, had right proximal femoral replacement in Oct 07), moreso in my fingers (RSI because of my crutches) my spine and my shins…
I am constantly drained all the time (also on Tamoxifen & Zoladex (since Sept 07) and have problems in getting my words right at times… don’t even talk about libido issues…
Just wondering who else is on the talbets and what I may come to experience - onc didn’t give me any indications…
I can obviously only comment on my own experience. I’m on pamidronate which is an I.V. bisphosphonate and had flu like symptoms the first time I had it (3 years ago) but was told by the nurse afterwards that I should have drunk quite a bit of water while having treatment to stop it happening - whether this is true or not I’m not sure.
It does take a while for your bones to settle down and for the bisphosphonates to take effect and I’m not surprised you’rfe feeling drained all the time especially as you’re on Tamoxifen and Zoladex as well.
Okay - won’t talk about libido issues but think I know where you’re coming from!!!
I have been on Bondronat (ibandronic acid in tablet form) for 6 months now. Initially it felt as though my head bones were"knitting" together and my teeth ached but this stopped after a few weeks. I had the flu like symptoms as well.
At the moment I am getting a lot of aches and pains all over which I mentioned to my ONC. I suggested it might be the Bondronat, or Arimidex which I take also. He found that idea very amusing so I don’t think he thought much of that idea!
As regards libido…both my husband and I have put thoughts of sex pretty much on a back burner through choice. He is so frightened of hurting me and I haven’t felt it to be as important lately. Although we are both around 60 we are newly married!!
I would like to mention another thread I have been reading about vaginal atrophy and ways to treat it so perhaps we should put our minds to it to ward it off!!
I questioned on another thread what bisphospphonates were, and now I read that it’s in Bondronat. I’m on that!! Been on it for two years. Don’t know about specific side effects because I seem to constantly have different side effects of chemo etc. My head seems to be constantly muzzy these days, got a bit worse just lately, but that may be because of the evening gins I enjoy! I daresn’t mention it at the hospital in case they tell me to give it up - and they’ve no chance!
Riftikins, I was on Arimadex as well but it stopped working for me so now I’m on Aromasin. Let’s hope it’s working.
Ive been taking ibandronic acid since sep 06 when i was diagnosed. I can’t say that ive had any specific side effects that i could put down to these tablets (i suffer from allsorts of minor stuff-pins and needles, dodgy knees, dodgy feet, muzzy head, inability to string a sentence together, lack of sleep, bad memory -oh the joys of medication!!.. but this could be down to chemo, radio or tamoxifen (or that im now the BIG 40!!) -
but I think the worst of the tablets is having to take them first thing in a morning (cos you’ve got to have fasted for 6 hours before taking!) with a full glass of water-then remain upright for 60 minutes, and have nothing else to eat/drink (except water) for at least 30 minutes-i really miss my first morning cuppa, and the opportunity to lie in bed and watch a film on a sunday morning-its not the same having to sit upright, with a galss of water. But hey small price to pay for staying well I suppose.
I still miss my cuppa tea. …and toast
And sometimes I think the tablet might come up again, it doesn’t but it’s after all that water.
Yes a small price to pay though.
Hope you start feeling the benefits of the tablets soon Poannie.
xx
I think I might be the “Bondronat queen”, as I’ve been on it for over four years for my bone mets (spine, pelvis, ribs, skull). Never had any side effects – just remember the relief after a very short time when my bone pain subsided. Can’t speak highly enough of this great treatment, even though you do have to give up your morning cuppa in bed . . .
Ah but ah but, do any of you cheat?? I sometimes have a coffee with my tablet, or a slice of toast before the 30 minutes are up!! Does it do any serious damage to break the rules once in a while??
I think tablets work best with tap water and once you do start to eat they stop working…this was some info I got from the official Bondronat site.
I want them to work SO very much I don’t eat for an hour…although the leaflet says 30 mins is ok!
Hi again – yes, it’s a faf taking these tablets as directed, but there are reasons for the rather strict instructions. Drinking lots of water ensures the tablets go beyond where they might give you the side effect of damage to your throat or oesophagus (happened in some of their trials); sitting or standing after taking them ditto – they stay in your stomach, where they belong. Research has shown that fasting (except for water) for a half-hour after taking the tablets gives them the chance to dissolve and disperse into your blood stream without any competition – like Belinda, I also wait an hour before eating/drinking anything else, or taking my other drugs/vitamins/pain-killers, to give the Bondronat tablets the best chance of zapping my bone mets.
Our “take-away” tablet treatments are marvelous for liberating us from the hospital, reducing the load on our over-worked doctors & nurses, giving us a bit more control over our very out-of-control lives and helping us to be kinder to our veins. On the other hand, they do require our full compliance to be most effective – taking them regularly, at the appropriate time, in the appropriate way. After four years on this drug (not to mention also being on Xeloda, that has its own timetable) I’ve gotten used to getting up an hour before breakfast to take my little tablet, then sit up and read, or shower, or load the washing machine, or stare outside at the birds, etc. Maybe think of it as “reflection time”?
Marilf, many thanks for your sound advice, and Belinda too. You prompted me to re-read the leaflet enclosed with the tablets, something which I haven’t done in quite a long time. It’s the first tablet of the day, of course, and as I mainly drink hot water throughout the day, I don’t normally have a problem with missing an early morning tea or coffee, just occasionally I’ll have a coffee.
And I’d forgotten the bit about not taking other medication for at least 30 minutes!! I don’t always take painkillers within the 30 minutes but sometimes I do! Glory be!! No wonder I now have an inflamed oesophagus!
…and toast
. . .