Just wondering how my W.A. ladies are going. Myself, doing fine atm. Xeloda two weeks on and one off, and xgeva three weekly, are doing good job right now. only problem is my skin esp hands and feet but definitely mamageable on reduced dosage. Had positive scans recently. Hoping you are all having some good results. Would love to meet you lovely ladies soon! Julie xxx

Hi ladies I'm currently stable with further tests in Jan 15. Still on monthly zoladex implants and demosunab. Having a better month with side effects than the last few months. Take care Lisa

Hi Julie Many thanks for your helpful advice. I'm in the country but do have access to an excellent lympodemia physio so am blessed. Review on 19th not so good as now have mets in the brain and Ca has skyrocketed. Am now on xeloda but very early days yet. MRI in 2 mths to check progress. Currently trying not to think about it and just manage the fatigue. Since my last review I've resigned from work and am endeavouring to organise my days without meeting mandated timelines. Have recently touched base with a couple of other ladies who wander the same hospital corridors so am not feeling as isolated - a mixed blesing for us all. It is quite amazing how alike we feel about this monster and how it affects our lives. Many thanks for your support Marilyn

Hi there Julie F ingers crossed for your scans next week. We live in a strange world punctuated by machines and the opinions of others..... My dosage is 3 tablets twice a day and onl y day 6 today. Only side effect so far is not being able to sleep. Early days. I was in a trial for most of 2014 and it was working brilliantly however they stopped it because of side effects. Admittedly I was perpetually fatigued but otherwise ok. Disappointing. I live in Geraldton, another beautiful day - not as hot as Perth has been! Hope today is a good one for you.x

hi there | BCNA Online Network

13 Replies

Lynette
Member
11 years ago
Julie they do go a long way ! I find the oil quite nice and soothing but then I haven't got your problems. Not everything works for everyone. Trial and error. I know when I had finished my radiation I was told to use Ugvita cream it still smells like dead fish but I have very little scaring !
MarilynJ
Member
11 years ago
Hi Julie

My oncologist says to take B6 100mg every day of 3wk cycle. Research shows it modifies symptoms of hand and foot syndrome. Seems to work for me. Worth a try?

Keep smiling and ejoy today

Marilyn
Julie_Bache
Member
11 years ago
You would have to use an awful lot??? But worth looking into, thanks.
Julie_Bache
Member
11 years ago
You would have to use an awful lot??? But worth looking into, thanks.
Lynette
Member
11 years ago
Have you girls tried evening primrose capsules not taking them but pricking with a needle and putting on your skin ? Just a thought ! I use it on my dry skin
MarilynJ
Member
11 years ago
Hello there Julie,

Glad to hear things have stabilised for you. Are you taking Vit B6? This cycle has been easier for me with more energy and with hands and feet being affected later in the cycle. This cycle has seen the appearance of brown marks on palms and soles. Have you had these? Do you know what they are. Seeing my oncologist next week so will query then.

Take care

Marilyn
Julie_Bache
Member
11 years ago
Great news Lyn. I know all our cancers are different and react differently to treatments but it is very encouraging to hear of such longevity! I'm in my eighth year post abc diagnosis and still going strong. Here's to many more years and many more new drugs added to our list of possible effective treatments! I have treatment every third week on a Wednesday at St John's in Murdoch. If ouappointments align we may be able to meet for a cuppa?

Have a good week all. Julie. xx
MarilynJ
Member
11 years ago
Hi there Julie

F

ingers crossed for your scans next week. We live in a strange world punctuated by machines and the opinions of others..... My dosage is 3 tablets twice a day and onl y day 6 today. Only side effect so far is not being able to sleep. Early days.

I was in a trial for most of 2014 and it was working brilliantly however they stopped it because of side effects. Admittedly I was perpetually fatigued but otherwise ok. Disappointing.

I live in Geraldton, another beautiful day - not as hot as Perth has been! Hope today is a good one for you.x