Hi Ladies
I’m looking for some advice about Bisphos and know just the place to come!
I’ve been in IV bisphos (Pamidronate) since last May when my bone mets were dx. I’m now thinking of changing to tablet bisphos for 3 reasons. 1 - my veins are knackered, 2 - I hate going to hospital every 4 weeks, reminds me too much of chemo and 3 - the osteonecrosis problem. So can I ask a few questions please?
Have any of you changed from IV to tablets and if so did you have any problems/side effects?
What does your onc think about IV and tablets - any preference or reason to prescribe whichever one you are on?
If you are on tablets which type do you take, and again any reasons for this choice (other than money!)?
If you are on tablets - is it difficult/annoying etc to take them in the way they have to be - does it interfere too much with your mornings?
and finally (because I haven’t searched for this old topic on here)
Does the osteonecrosis problem only occur with IV bisphos and Bondronat tablets? ie the ones with Nitrogen in them?
I’d be grateful for any advice/answers as I have my next infusion tomorrow and want to discuss this again with my oncologist so that I can change if needed after this one.
Thanks
Nicky x
Hi Nicky
I must try and remember all your questions
I hope I can help although I have just switched from tablets to IV bisphosphonates, not the other way around.
I was on the ZICE trial which was Bondronate tablets versus an IV bisphophonate - name forgotten. I had no choice whether it was IV or tablets. That was chosen at random.
I did not get on with the tablets at all. The actual tablets seemed ok with no side effects but the waiting for at least 30 mins before eating and at least an hour before bending became a drag. Because I was in so much pain, and still am, each morning the first thing I like to do is take a multitude of pain killers and eat breakfast. Although I could still take the tablets along with the Bondronate tablets, I couldn’t eat and therefore started each day feeling nuaseous. Also I like to take tablets with fruit juice or anything else to take away the taste and of course you can only have water with the bisphosphonate tablet.
When I came off the trial it meant that I could not then have the IV bisphosphonate that was on the trail (name forgotten ). And I have had to have Pamedronate which is an older IV bisphosphonate.
My oncologist seems to think Pamedronate is as good as the new IV bisphosphonate. and possibly better for me as it causes less nausea than the more modern drug.
The Jaw business - I do not know how high the risk is.
Could you have a PICC line. I am thinking of it due to knackered veins?
Hope this helps a little
Ena x
Hi Nicky I think my pm probably answered all your questions apart from the osteonecrosis one…mmm not absolutely certain but I think the risk of onj is the same whether you use tablets or IV. Don’t know if anyone has heard otherwise?
I haven’t had any side effects from the tablets…can see it would be a chore if like Ena you’re juggling pain killers too though.
My hospital gave me the first lot of tablets and all following tablets have been via my GP. Why not give them a go…you could always go back to infusions? Like you I was on Pamidronate and I don’t miss the time spent hooked up. It’s so slow to infuse and my veins were troublesome…perhaps if I’d been on Zometa I wouldn’t have changed. Good Luck whatever you decide…x… 
Hi Nicky (and Belinda & Ena)
I’ve been on Bondronat tablets since my mets (bone & liver) dx in October 2003, so I guess I must be the “Bondronat Queen”, having originally received them at the Christie Hospital as a “named patient” from Roche before they were licensed in Europe for the treatment of BC bone mets. Now get them via GP prescription, along with my Aromasin.
Although taking Bondronat is a bit of a faf if you like a cuppa first thing, or need immediate pain meds as soon as you wake up, neither of these apply to me at the moment, and I’ve never had any side effects from them. My onc believes that bisphosphonate tablets are (a) as effective as the IV treatments, (b) easier/better for us, as we don’t have to be infused at hospital or wreck our (pitiful in my case) veins, and (c) less likely to give us any “end of the month low before the next injection” pain, which could be mistaken for bone met progression.
I have had a couple of episodes of painful bone met progression since my dx, but these have only lasted a couple of weeks before the Bondronat has kicked in to control them – only take ibuprofen for pain. So . . . I’m happy to stay on them, for as long as they work for me. As for ONJ, I don’t know whether there’s less risk with Bondronat than with the IV ones – I do worry about ONJ, but wouldn’t want to change my treatment, as I have extensive bone mets, and “if it ain’t broke, don’t fix it” is my onc’s motto.
Hope that helps –
Marilyn x
Thank you ladies, I knew you wouldn’t let me down! Good to see both sides of the coin as well but sorry you are in such pain Ena, I had read this elsewhere from you, so understand why you’ve gone onto IV bisphos. I think, overall, my view is to change for the time being at least to give my veins a break to recover and to keep me away from hospital for a while. I’m sure I can go back on to IV bisphos if I need or want to at a later date, having asked my onc this question once before. Now I just need to track my onc down today, as I’m not due to see her, to discuss this and get a prescription.
Thanks again
Nicky x
Hi all…Marilyn you are now Bondronat and Xeloda Queen…
Good Luck with the tabs Nicky…and less hospital will be great!..
Hi Ena, Pamidronate is a good infusion, think I was on it for a couple of years at least…I really do hope it begins to help with your pain problems.
xx
Hi everyone
Wondered if i could take advantage of all your knowledge. I have been on bondronate tablets for about a month and have just finished a course of 5 Rads to L4, 5 and the sacrum. I’m still getting a fair bit of pain and nerve pain in my buttocks and legs. How long do these treatments take to kick in.
Hope you don’t mind me high jacking the thread but there seems to be a lot of experience here.
Thanks
F X
Hi fuzzyface
When you say you have just finished rads I do not know if you mean literally.
I had rads to my upper spine and to a rib a few weeks ago and it did take about 3 weeks before the pain really settled. I still need paracetomol, ibuprofen and morphine to keep pain at bay but at least the combination or rads and medicine works.
On Wednesday I had one session of rads to my lower spine and I’m sure the pain has got worse since then. But experience tells me that in a couple of weeks the pain should ease.
Hope that helps
Ena x
Hi Ena
Finished Rads this week so hopefully there is some relief to come.
Thanks for your help
F
X
Hi…I had some nerve pain…hip travelling down left leg…about a year ago…I had one dose of rads to my sacrum…the pain was worse for a few days…much worse… 
but then it got better and I have no pain at all now. From my own experience I think my bisphosphonates took about 3 or 4 months before they really began to improve things.
Good Luck…x
As I understand the osteonecrosis jaw prob is only reported with IV Pamidronate (which I take). I do have numb chin syndrome which onc puts down to my meningeal mets/bone mets pressing on a nerve. After a couple of incidents getting quite severe jaw pain I decided to get the dentist to take a look to eliminate osteonecrosis. He referred me to dental consultant who took a look (X-Ray and examination)and agreed with onc.
Dental consultant reckoned risk of jaw osteonecrosis comes when having major e.g. root canal dental work done, in which case he advised taking antibiotics before and after treatment, and perhaps attending dental hospital to ensure least invasive treatment possible.
That reassured me and I am continuing with IV pamidronate. I found the wait for pain/nausea tabs/wait for cuppa issues around the oral biphos a bother.
Lottie
Lottie
Hi Nicky, re the osteocronisis point, I had to have a broken molar removed a few weeks ago - it wasn’t causing me any pain but I was advised to have it removed as I would be in trouble if it became infected while I was on chemo. I’ve only been having Pamidronate since December but was referred to the maxillofacial unit at my hospital - they were great, they removed the tooth under local anaesthetic in the hospital and gave me a 10-day course of antibiotics to prevent infection - this appparently is following the laid-down protocol re bisphosphonates and invasive dental work. The gum has now healed over nicely and I have no problems with it. I don’t think dental work need be a problem if the correct procedures are followed - the hospital certainly didn’t seem too worried about it.
Good luck with whatever you decide.
Lesley xx
Thanks everyone for your comments and experience - keep them coming as my onc wasn’t there today ( I was only hoping to see her on the off chance) but I have made an appt to see her next Weds so any further info would be great.
Nicky x
Hi Nicky
I too had the tablets before my pamidronate, but couldn’t get on with them at all (the tablets are cheaper than pamidronate too). My veins have also collapsed, and previously i have had a picc line, this worked really well, but i had to have it removed when i went on holiday as i enjoy swimming.
Anyway recently i’ve had a portacath, this is inserted underneath the skin (under a light gen anaesthetic) it is therefore very good for cosmetic and infection reasons. I was told that my veins once collapsed would never recover - so I’m not sure what a break would achieve. Maybe this is wrong info.
I have to go 3 weekly to hospital for herceptin anyway so i have pamidronate at the same time.
I too need dental work so i am going to have a 3 month break from pamidronate before this and i think also a three month break after it.
Hi Celeste
I also think my veins will have given up for good but I really need a break from the hospital visits at the moment. As I don’t have to go in for other treatments I’d really like to get away from the place! I know that it will be a pain in the neck taking the tablets each morning but I will try and give them a go. I’m sure I’ll be back on chemo at some point and think I’ll need a portacath then but don’t want to have any more medical interventions right now. Swings and roundabouts
Thanks for your view on things.
Nicky x