Due to rapidly vanishing veins, I may need to come off zometa IV and go onto oral bisphosphonates and am wondering if anyone has gone this way and which oral one is regarded as ‘best’. I would need one with the least GI side effects but know this can be worse with oral rather than IV.
My last bone scan showed improvement in existing areas but a new area on my left upper ribs (cancer side) and they are regarding this as normal and still believe the zometa in combination with zoladex and arimidex is working well and that zometa gives great results.
Apologies to anyone who has heard all this before !!
Hi Liz…more and more of us seem to be on Ibandronate…I’ve been on it a while now. I’ve found the tablets ok…just taken one! You have to stay ‘upright’ for a while after taking the tablet but as you take it when you get up I don’t find it a problem. My ‘upright’ is spending time with the hoover, ironing and catching up on email…oh my heady lifestyle! You take the tablet with tap water (v. important it’s only tap water) and then it’s recommended you wait 30 mins before eating breakfast…as I want the max from this tablet I wait an hour. Oh and you have to have a fast of six hours before taking the tablet…but even I can’t eat in my sleep! For me it’s been trouble free…you soon get into the routine…my veins were rubbish and it’s so nice not sitting at the hospital being infused.
Take Care…x.x.
I’ve been taking Bondronat for almost six years – it’s really worked well for me throughout, and I’ve had no side effects from it. Yes, it’s a bit of a faf with the timings, getting up early, sitting up, not eating, no other drugs, etc., but well worth it for its great impact on my bone mets, which are extensive but mostly stable. I’ve had several episodes of bone met progression since my mets dx in October 2003, but each time, the Bondronat has kicked in after a couple of weeks and reduced the pain. In addition, my onc rates oral bisphosphonates over IV ones, as tablets give us a regular consistent dose of the drug, with no risk of possible “breakthrough” pain at the end of an IV cycle (i.e. when your next dose is due), which might be confused with progression.
I’m not sure what the GI impact would be – you probably need a discussion with your oncologist, a GI specialist, and maybe some cyber-research? I do know that one side effect of Bondronat is the possibility of reflux after taking the daily tablet – that’s why we have to drink lots of water and sit/stand up after taking it. I’ve never had this (or any) side effect, so can’t comment.
Hi Liz I habe been on Pamidronate, Bondronate and Zolidronate for ten years now. I found Bondronate very good as it enabled me to go to France for a longer period as I did not have to return for IV treatment. But when I went back on chemo I found the timing of pilltaking, when to have them, a bit too much as I am on MST etc, so am back on to Zolidronate (IV) again. Bondronate was good for me but I found the daily routine of staying upright,fasting overnight, and waiting until I could take my painkillers a bit much. Bondronate agreat for a while but I found having IV treatment got that bit over for the next four weeks in one go, rather than dealing with it daily. However I have thought of returning to Bonronate again after I have completed my present chemo and have spoken to my Oncologist about this. She said that would be OK. Sorry if this is all a bit confusing as I am saying I stopped it but I would not hesitate to go on it again and it worked just the same as the IV method.Let me know how you get on with it. Regards (Scottishlass)
Hi Liz
I changed from Pamidronate to Bondronat earlier this year for the same reasons as you - only 1 remotely good vein left. I’m not on any other treatments atm that require hospital visits so it’s been great not having to go there every 3-4 weeks. I’ve not found any problems with the 30mins - 1 hour wait in the morning - I do the same as Belinda. The fast also isn’t a problem as I’m asleep. The only problems I’ve had are more burping than usual - Bondronat has given me terrible wind at times but luckily not the other end All in all I’m really pleased I’ve changed to the tablet form as I want to keep away from hospitals for as long as possible - knowing I’ll probably have chemo again at some point when I could go back to IV bisphos if needed. Just got to hope the next round of scans show that they’re doing as good a job on me as everyone else.
Nicky x
Many thanks for all your replies - much appreciated ! Sorry for the delay in replying - my OH went to docs this morning but ended up being transported to hospital by ambulance with a poss mild heart attack, so visiting him around visiting my dad in a hospital an hour away as he had a quadruple bypass on Weds. I’m going to get a hospital season ticket…
If I do need to swop, the fasting wouldn’t be a problem as although my sleep is rubbish with the hot sweats and aching joints, I don’t indulge in midnight feasts and doing household chores sound like a productive way of using up the ‘upright’ time !
I think I will also need to take into account the fact that I will probably need chemo again at some point and need to preserve veins for that. Perhaps I will have to ask ‘progression’ type questions from my onc with possible timescales (even though that may well be very unpredictable.
Thanks again girls and if I think of anything else, I’ll add it on.
Just dragging this thread up again as my onc has given me the option of changing to oral bisphosphonates or having a line/port if I want to - mainly because like many of you, my veins are giving up the ghost I’m due for Pamidronate next week so have said I will see how it goes.
My one query about the oral bisphosphonates is that I somehow feel ‘safe’ by having my bloods tested every four weeks and I think I would worry if these were only done prior to three-monthly onc appointments. Does anyone else have bloods done more regularly?
She also told me that she would have to apply to get the oral tablets funded for me as they’re not fully available on the NHS in this area - has this been others’ experience?
Hi Lesley
I felt the same as you but seeing as my onc doesn’t use any blood markers the only ‘security’ I felt from the blood tests was checking all the other cr@p I have to deal with since being on chemo and hormone treatments, like cholesterol and potassium
So far so good though and it is great not to be at hospital on a regular basis. My bisphos (Bondronat) is available on the NHS but I know Zometa isn’t in this area so I guess it depends on what you could move on to. If funding comes up I read ages ago on here that it is worth mentioning the hospital bed/chair/space you take up each time you have an IV and also the nursing staff’s time - all of which must cost a fair amount. If you move to oral bisphos just watch out for the wind! Burp city here we come.
Nicky xx
I hope you don’t mind me jumping in.I know that bisphosphates can effect the bones in the jaws,not in everyone fortunately.I hope you don’t mind me saying,just be extremely meticoulos with oral hygiene to avoid any dental extractions.
I work in a dental dept in the hospital.I’ve had a mastectomy but don’t need bisphosphonates.
Hi Lesley - your life will definitely change!! In my previous life I also couldn’t burp but boy am I an expert now!
Debs - thanks for the note about the jaw problem. Unfortunately I haven’t been able to refuse bisphosphonates so have just had to be very aware of the problems that can be caused. In fact I had to have a tooth extracted earlier this month but it all seems OK. I went to the hospital to have it done and the dentist/surgeon (who was the necrosis ‘expert’) says that more problems seem to be with the IV rather than the oral ones. He did also say it’s a time bomb waiting to go off as more of the general public are prescribed them for osteoporosis as well as bone mets.
On that dampener I’ll end.
Nicky x
Hi Ladies, I am back on the Bondronate again as I finished my chemo recently ( Capcitabine) and am having no problems and no excess burping either! It is going well so far. But I do miss my lie-in bed, lying flat and reading…and even more so that wonderful first cup of tea and toast that my OH used to bring me each morning in bed. The sitting up for me is still a chore, so now I get up, take Bondronate ( from a vacuuum flask/jug in my bedroom.)…then I go for a shower and wash my hair, do my teeth etc, then I can have second lot of pills ( Morphine etc)…go downstairs and keep sitting up for another half hour while enjoying that fabulous first cup of tea…or three…
So Liz are you on it too now and how are you managing it yourself? I have been for my CT Scan this morning and getting results next Friday so hoping it is good news and not bad. Love to you all. love Val x
Well, without wanting to tempt fate I’m still on IV zometa as the nurse has managed to find a vein each time since I first posted. I’m going out in half an hour for this month’s drip so hope I haven’t jinxed it ! Then on Monday I have a bone scan so am back to oncology for them to put the needle in rather than the radiologists. Results day is 17th Dec. Last time I saw my onc, she said the ‘spread’ may actually be rads damage as it would have been unusual for the existing bits to show some improvement at the same time as another bit appear but of course this is unpredictable. We’ll see !! I have quite a few questions to ask her this time because of some family illnesses and bereavement this summer and emailed to make sure I would see her and she’s said yes, absolutely no problem.
With regard to the ONJ, I had a visit to the dental education centre for a checkup as I don’t have a NHS dentist (2 yr waiting list here). You are seen by supervised students and they were excellent. They all picked up on the zometa immediately but fortunately I didn’t need an extraction or filling, just a clean and polish. Apparently in spite of the chemo, rads and zometa my teeth and jaw are very strong so that was a major bonus.
Well, off for hunt the vein with hot water bottle in tow (not allowed to use heat pads now in oncology…)
To all those laies on Bondronat who miss their first cuppa of the day in bed…my hubby still brings me mine during what I call my “happy hour”(i.e. no bending over, no eating no nuffin except tap water)- only without the teabag, without the milk and without the sugar…okay - so it’s a mug of hot water…but actually it’s not too bad & it does warm me through as I sit upright in bed.
Actually - have been taking Bondronat for about 6 weeks now (part of ZICE trial comparing Zometa & Bondronat) & find my intial poker uprightness has relaxed a bit from the absolute perpendicular with no ill efects…I suppose I too could get up & shower etc but, as a rookie, am still a bit nervous about bending over to pick up the soap or something & slooshing acid all over my stomach lining. Certainly I haven’t succumbed to the reported burping side-effect by staying in bed!
Hi everyone,
Well I have been on Bondronate again for a few weeks now and am managing fine with it. To be honest after having chemo it seems a doddle as I only need to take one tablet first thing, (not twice a day with chemo and having to force myself to east something again at bedtime).
I got the results of my CT Scan yeatersay and all is well apart from the bone mets that they were already aware of. But still having bowel and wind problems but as I also have Irritable Bowel syndrome and Diverticular disease it is difficult to decide what is causing it. I had trouble all year but put it down to a chemo side effect. But I have been off chemo now for a month. So Oncologist has decided to go back to square one a has done blood tests to check that I am absobing my food properly and to check there is no other underlying bowel infection which she assures me is eassily treatable. I have also to do a bowel test which under the circumstances is a wise move. So I am pleased the CT Scan didn’t show any further problem.
I hope you are all ticking along with your tablets etc, Love Val XX
Hi Haxted…I hoover, wash hair, iron, do all the normal early morning stuff…it’s been ok for me. I think it’s just laying right down which is the thing to avoid…still miss the cuppa and been on these tablets for a few years now…hope you can now relax a bit…x
Hi Val, glad, so far, tablets are ok. My husband has had diverticulitis so I know that’s very painful. …x
My onc has told me that I can change to oral bisphos if I want to as I’ve had troublesome veins but I have been told by my GP and one of the breast care nurses that I would only have to take this tablet once a week - I understood from ladies on here that it was a daily tablet. Can someone put me straight on this?
I heard from someone else that they are on a monthly tablet so presume there are two types. I would check with the hospital which one you can have. Think it might be the daily one.Let us know. Love Val X
Hi Lesley and Val…yes there are such tablets…(I’ve forgotten the names of them!) but my understanding was they were used more in cases of osteoporosis rather than for breast cancer bone mets patients. But I do remember reading this quite a while ago though so maybe the protocol for prescribing these tablets has been changed???
I also read, somewhere, that a yearly bisphosphonate tablet was being trialled for osteoporosis patients.
Ibandronate (Bondronat) is a daily tablet.
xx
Yes, that’s what I thought - thanks Belinda and Val. My mum has been on weekly tablets for osteoporosis so I suppose it would be those - I once asked if she could have IV infusions as the tablets made her feel sick and was told if she did that it would be quarterly - so I suppose in that way it all makes sense.
Anyway I got on fine with my veins last week so am going to persevere with the Pamidronate for now - for me the secret was to drink about two litres of water before I went in and the veins were lovely and plump, the nurse got the needle in on the first attempt
You take the tablet with tap water (v. important it’s only tap water) and then it’s recommended you wait 30 mins before eating breakfast…as I want the max from this tablet I wait an hour. Oh and you have to have a fast of six hours before taking the tablet…but even I can’t eat in my sleep! For me it’s been trouble free…you soon get into the routine…my veins were rubbish and it’s so nice not sitting at the hospital being infused.
I’m due for Pamidronate next week so have said I will see how it goes.