[sessakellyParticipant]

Hi,

Unfortunately today the dentist said Stewart has osteonecrosis of jaw either due to steroids or zometa, of course this is devastating considering Stewart came out of hospital yesterday with a diagnosis of bilateral PE due to thalidomide.
If its not one thing it's another, and he's really beginning to question his route forward I.e. SCT.
I know he's really worried now, has anyone else had this problem and will it mean he has to stop steroids and bone infusions, or worse yet his thalidomide?
They've talking about operation on his jaw now, should he be concerned?

Very very worried, in need of some hope

Vanessa

[tomParticipant]

Hi Vanessa and Stewart

Am sorry Stewart has been told about the Jaw problem, I was told to keep my eye on my Jaw when I was on Zometa, you two have had a busy few days reading your post.

The Dr will or should be able to put both your minds at rest and give you advice as to the best way to go.

Good Luck with it all.

Love Tom "Onwards and upwards" xx

[andygParticipant]

Hi Vanessa
I'm sorry Stewart is having such problems with everything – I remember having problems when I was on CDT and being in and out of hospital regularly with back problems and infections in my case. I know osteonecrosis of the jaw can be a side effect of Zometa and PE is a side effect of thalidomide. I was warned about them both at the start of my treatment I had to and still have to inject myself everyday with blood thinners. The doctors will want to sort both problems out before moving forward to Stewart's SCT Although this is new and frightening for you the docs will have dealt with this before.
I've been lucky overall with the side effects over the 16 or so months I've been taking all sorts of different drugs but not so lucky with the results lol. At the moment I'm making a bit of progress yippee. Hmmm hope I haven't jinxed myself :-/
Good luck with everything and I'm sure Stewart will soon be back on track.
All the best.
Andy xx

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