Forum Discussion

lesleyb's avatar
lesleyb
Member
11 years ago

Newbie to the group

Hi all, I must admit I do find this site a little confusing.  I seem to be hitting a few brick walls from time to time. However, I willl persevere.

I have mets to my spine (many of them), sternum, ribs.  Recently completed rads to spine and am on Xgeva and Arimidex.  I was pain free not long after the RT but it does seem to be coming back in my spine which is concerning me a little.  Not bad enough to take meds but enough for me to start to worry. Does anyone know how many rads you can have to the same spots?

I have also been getting some terrible side effects from the Exgeva, a few months in.  I have neuropathy in my feet which is quite painful, constant headaches, sore legs, aching teeth .  My last TM's TM53 were 41.  I am hoping these new pains are not pointing to these markers increasing.

I see my onc in a week so hopefully will get some answers then.

I am 63, married with three children and one grandchild and live in Gippsland, Vic but will be moving back to Melb. soon hopefully.

 

 

 

side-effects

2 Replies

  • Pink66's avatar
    Pink66
    Member
    11 years ago

    Hi Lesley :)

    With the rads, I think it depends on how many you had the first time around..  I recently had 5 zaps to my left hip and was told that in time if needed could have another 5 but when it came to my new primary on the right (first one on the left) they did not wish to radiate again as my heart was of possible concern from extra treatment.. but did not say that the same side could not..  mmm.. LOL that is not very helpful is it !!!!

    With the neuropathy, I would be looking closely at the Arimidex rather than the Xgeva..  I had all sorts of issues on Femara (similar).  Found tai chi really helpful in easing it and also panadol osteo. I had slowness, stiffness, aches and claw hands and sore feet....  oh the joys of treatment :)

    I have been on Xgeva for 2 1/2 years now and in the beginning got a bit of large bone pain the day or so after it but no more than that.. and it is funny you should speak of teeth..  mine are driving me nuts but unfortunately i have fractured them and both have now exited stage left!!!..

    With the teeth, I found using a sensitive teeth toothpaste twice a day and also using a product i got from my dentist called tooth mousse really really helpful.

    hoping your Oncologist can come up with some answers and soon

    Cheers, Sharon (pink66)

  • morry's avatar
    morry
    Member
    11 years ago

    Hi LesleyB

    I have been taking Xgeva for nearly two years. I did get quite a lot of pain in my legs in the beginning and at present dealing with toothache. I have had numerous visits to dentists and Endodontis and they can find nothing wrong with my teeth.

    My oncologist has put it to me if I come off Xgeva I would then need to have chemo.

    Not much of an option as the Xgeva has been working really well. I would suggest stick it out for a little while it does get better.