Maxine

Hi Annette,  How did you go with your onc, are you now on Xeldo?  Have you been on any other meds, if so what and how long?   Sorry to be nosey but just interested to know what could be down the track for me.  So far so good now that Afinitor has been reduced to 5mg.  Had another UTI with antibiotics given  earlier this week.  I have bone and ct scans towards the end of this month, so will find out then whether this oral chemo has worked at all.  Results will be very interesting to find out because of all the upset with the meds. Onc seemed very pleased last visit with everything except for my blood pressure, which has been playing up since I started the Afinitor.  I said he was the cause (he's a bit of a hunk) as he 'sets my heart a flutter'. See him again in a fortnight before zometa infusion.  I'm realy hoping that the Afinitor is doing its job.  Very interested to hear from you.  Sue:-) 

I understand the anguish you must have felt being told of secondaries at your 5 year anniversary.  For me it was on the day of my 8th Anniversary Visit Nov 2012 ..(lung, bones, nodes, ovaries)..  and then 12 months later a new primary on the 9th anniversary visit (like the rest was not enough LOL)

It takes a while and sometimes when you think you have it sorted it can jump back into the front of your thoughts..  But I promise the thoughts will settle and you will begin to think about things in a new and different way.  Just remember, there is no right or wrong it just is :)  (only way I get around it !!!)

Doing things you enjoy and taking time for you is really really important and helps so very much..  and I have found my local Breast Care Nurse and local support group to be so amazing and helpful..

If you are interested, I help to facilitate the Advanced BC Group and would be happy to add you into it.

Sending you huge healing hugs xoxoxoxoxox

Sharon (aka Pink66)

I understand the anguish you must have felt being told of secondaries at your 5 year anniversary.  For me it was on the day of my 8th Anniversary Visit Nov 2012 ..(lung, bones, nodes, ovaries)..  and then 12 months later a new primary on the 9th anniversary visit (like the rest was not enough LOL)

It takes a while and sometimes when you think you have it sorted it can jump back into the front of your thoughts..  But I promise the thoughts will settle and you will begin to think about things in a new and different way.  Just remember, there is no right or wrong it just is :)  (only way I get around it !!!)

Doing things you enjoy and taking time for you is really really important and helps so very much..  and I have found my local Breast Care Nurse and local support group to be so amazing and helpful..

If you are interested, I help to facilitate the Advanced BC Group and would be happy to add you into it.

Sending you huge healing hugs xoxoxoxoxox

Sharon (aka Pink66)

It's so good to hear your news Annette.  Hope you have a wonderful night tonight.  A trip to WA sounds ideal and if your Oncs both agree sounds like the time to do the trip.  Best to do these things while you are well.  With regard to sore feet - I never had any side-effects from Tamoxifen apart from the odd flush initially but the second round of Tamoxifen no side-effects at all.

I do suffer with neuropathy quite badly in my toes and balls of my feet which is due to the chemo.  Fingers too but I'm still able to type thank goodness although not as fast as I used to.  My feet do inhibit my mobility and limit the distance I can walk and so much of my time is spent sitting with my laptop on my knee - that's when my lapdog will allow my laptop to take her place!!!  I walked quite a bit the other day and am still paying for it - cold weather doesn't help.

Have a great time tonight and say hello to my hometown - Melbourne.  Looking forward to hearing the details.

Maggie xxx

No wonder you're feeling flat after such a busy day; put together with anxiety it's a wonder you have the energy to go out.  But having your hair done and a night out hopefully will lift you back up.

Hope you have a lovely night out with your husband and that your arm doesn't become too painful.

All the best,

Maggie

No wonder you're feeling flat after such a busy day; put together with anxiety it's a wonder you have the energy to go out.  But having your hair done and a night out hopefully will lift you back up.

Hope you have a lovely night out with your husband and that your arm doesn't become too painful.

All the best,

Maggie

Hi Maggie

Yes, currently I have seconday bone mets along my spine after initially having the same treatment as you for burst/fractured  L3.  I had breast cancer 13 years ago. Had lumpectomy and sentinal lymph node taken followed by 6 weeks radiation , and 5 years of tamoxifen.

At the moment I'm taking exemestane, 5mg Afinitor, and  Zometa injection monthly. I'm trying to keep on working but have found that with all the travelling to and fro that it is taking its toll, both health & workwise.  Have advise boss that I want to reduce my hours since my last episode with a reaction the the oral chemo and ending up in hospital for a couple of days. Still waiting for replacement to train up.

It really good to see all the support given on this site....as I have been doing a lot of browsing & reading a lot of blogs etc.  I live alone.  Children live interstate but are just a phone call away and have no hesitation to come to me if I need them.  I have other family close by which is good especially when I don't feel capable of driving the distance for treatment and onc appointments. My main concern is find as much information about possible side effects of Afinitor and how people coped with them. What did their onc do and what is the best way forward if this method of chemodoesn't work.  It really is scary and I'm a bit of a control freak, which doesn't help as I like to know the pros and cons.  Can anyone help.....Sue:-)