Hi Mills, sorry to read you had a bad night. Yes I know a couple of ladies (from a mets support group) who have had similar problems (both bisphosphonate users) but unfortunately they don’t use these forums, they use strong pain killers. I also know another 2 ladies who had some rads when they both had numb chins, it felt as though they’d just been to the dentist, difficult to drink a cup of tea etc. They were also bisphosphonate users. The rads helped a little. Belinda…x.x.x
Hi Mills
I’ve noticed over the past few weeks that my chin is slightly numb and I’m now wondering whether it’s down to the Zometa. I was on pamidronate for 3.5 years but it stopped working for me at the beginning of this year and so have switched to Zometa.
I had my treatment today but I always drink loads of water and must admit that I haven’t had any flu like symptoms since the first time I had pamidronate and was told that I really should drink loads of water during and after the infusion.
Hi everyone
cancerhelp.org.uk/trials/trials/trial.asp?trialno=9693
on the CRUK site gives the detail of the BISMARK trial which Kate mentioned some posts back.
Best wishes
Ann
Bumping up for Maldives
Hi Maldives…have just read all the posts from the beginning…yyou may find it helpful yo do that too xx
Moijan???
Hi mills sorry to hear you are suffering. Ive been on zometa roughly same time as you in between chemo ect. Im suffering same symptons as you exactly. Ive read a number of posts on ghis jaw thing and they all say the same. Ive not seen the max fax yet but i dont hold out much hope from what ive read its.put up and shut up. I do think we should be warned there is a high risk of this bone disease. Although id rather have that than be told its brain mets. Thats what im scared of.
How are you finding the opiets? Dont be afraid to increase them if they are not on top of the pain. Mine is managed by the mcmillian nurses. I just ring them if i need to increase dosage. I never just do it as they are so strong. I hope the pain relief gets on top of it. Sue xx
Mills are you still having the zometa or have they stopped it now. Are you having anything to replace it if the have? Third night no sleep. Dont know if its pain or worry keeping me awake. Even sleeping tablets not helping. its a Lonley time at night. Seems to go on forever. Xx
Hi Maldives, wasnt sure if youd seen my pm?
i scrolled right thru here, some useful tipsxx
Hi moijan yes i did thanks. Really usefull info.
Mills and some of the others are having exactly the same symptons in the jaw as me. Its getting painful now but i have settled a little as i thought it was brain mets. Still could be but i think its more likely the jaw thing.should find out next week mri and i see the max fax on 23rd. Got big bone scan and a liver mri too. Should have all the answers by end next week. My tumer markers are jumping up but im well in myself apart from jaw. Onc isnt worried so i suppose i shouldnt worry either. Thanks for the support. I know i go on a bit but ive bottled it up since i was diognosed in 2014. Coming up 3ys in may. Not done bad had 2 femur nails put in and had 2 rounds of chemo. Not bad considering the cancer is in all my bones. Thanjs again xx
Oh FF and moijan
Thanks for that info …everytime I forget something or get a headache from being on this site too much …I convince myself I got it in the brain !!!
Thanks everyone for info and support xxx