biphosphonates anybody?
biphosphonates anybody? Onc has started me on Fosamex ? as bone density scan has dipped further into the osteopenic range. Forgot to ask him if this is a long term treatment or just until bone density improves - does it ever improve once you’ve lost it? -also anybody have any idea how fequently you should have BD scan -was having them annually because of the arimidex -but now he says I dont need another one for a year (will have been 2 years then since last one).
thanks, Cherry.
Helpline and Ask the Nurse info Dear Cherry
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Hope this information is helpful.
Kind regards
BCC Host
thanks helen… yes I will -going to give them a call tomorrow- i’m enough of a crock already without the situation getting worse!!
Beware Hi Cherry,
I was prescribed Fosamax to supplement Arimidex because of osteoporosis but after each of two doses got dizzy and my gums started to become swollen and tender and bleed when brushed.
Looking it up on the net I found there are lawsuits in the US drawn up by people who have suffered jawbone death (necrosis). Apparently it interferes with the cell regeneration process in the mouth.
My bone doc was quite concerned about the reaction and I am now on Strontium Ranelate and watching my diet to try and avoid too acidic foods. He thought it best for me to avoid bisphonosphates altogether.
Just thought I’d better warn you but I’m sure there are many people who have not had any problem with Fosamax.
Regards
Judy
Fosamex Hi
I had a bone scan about 12 months ago…and like you was told that I was in the osteopenic range. I was given Fosamex but after I had been taking it for about 6 weeks (one a week) I started to get really bad indigestion so I stopped taking it. My oncologist has said that I should have bone scans every year.
Best wishes. Gongie
Judy &gongie Thanks girls
Judy-What is Strontium Ranelate -how does it differ from a biphosphonate? i’d read about the jaw bone thing , but thought it was caused by the I V biphosphonates ? -scary. I think if I have those side effects , I’ll be off it too!
Gongie -How long was it before you started having gastric problems -I’ve had 4 tabs now (weekly) and i must say it’s a real pain having to remain standing and not eating for at least half an hour ('specially the eating bit for me ha ha)!
Cherry x
-sorry gongie, i’m dim -see now you took it for 6 weeks-better watch myself as i’ve had 4 now.
cherry
Strontium Ranelate Cherry, have a look at the following link to the National Osteoporosis Society. That will describe Strontium Ranelate better than I can.
nos.org.uk/dr_media/nos/Strontium_ranelate_(Protelos
Regards
Judy
thanks judy… -just doing it now!!
cherry
Cherry daughter and I both on Fossomax [I’ve only just graduated to Pamidronate for bone mets] for bone thinning with Arimidex- no probs.
Zometa is the bisphos that’s caused all the trouble- largely in the USA where it’s used most. It takes years for ONJ to surface according to what’s online - long before you’re at risk they’ll have found a solution.
You don’t have to stand up [I think]- I sat down and had no gastric probs even though I’ve copped a load from years on NSAIDS.
The risks from bisphos are small by comparison with the price exacted by osteoporosis.
Yes you MUST have annual bone density test. There’s a new blood test which is superseding the current Xray- bear in mind that you can’t compare the two.
Like everything else in the br ca world we live in it all comes down to try it and see. Best wishes, dilly
Thnx Dilly - are you ok to stand OR sit with the fosamex , since i’ve been studiously on my feet for at least 45 mins after i’ve taken it. May I ask how long you took it for and how it differs from Pamidronate? (assuming that one may be stronger and given IV?Do you know when the new blood test is available and what they’re measuring?Sorry for all the questions -should do the research myself-but as ever, always a bit nrevous about what I’ll come across.
Regards, Cherry
cherry when you sit your GI tract is as vertical as when you stand- what you are not supposed to do is lie down for the half hour.
My area seems to be getting into a state of confusion over the new blood test- Xray dept saying bone scan pts should get bt and declining to do scan. But since bt and bs can’t be compared they capitulated after writing to daughter’s GP and onc declining to do bs and sent daughter an appt. Imagine onc made short sharp work of Xray dept [I find them a bit bolshie].
With osteoporosis the process of continually removing and renewing bone cells stops. Cells are removed as usual but not replaced- result big drop in bone density, pain and even fractures. Fossomax pills arrest the cell destruction so your bones stay dense.
Pamidronate is a monthly infusion/transfusion for bone mets. There is actually some replacement of lost bone cells and if bone mets not too fierce the destruction is reduced or arrested. I needed it and had to battle to get it as my bone mets were getting worse/more painful on the Fossomax which SHOULD have be changed to Pami as soon as the bone mets were seen on bonescan.
I don’t think you should come across anything hair raising in the info about bisphosphonates except the recently noticed longterm risk of ONJ from the heavy stuff. Should you ever need the stronger bisphos the prob will be solved by then.
Best wishes, dilly
Thanx again dilly! -You sound very knowlegable – I’ll be watching out for your posts in future!! Cherry