ANOTHER HICCUP

Hi Tracey

That is such disappointing news for you but I'm sure there are still heaps of options. As you know I have had very similar lung probs to you.One treatment to think about might be monthly Faslodex injections. My onc was very keen and I had 2 before having a rare allergic rxn. The problem is we have to pay for the first 3 injections and they are $600 each and then they're free from AstroZeneca. For some reason we only get half the dose that patients are now approved for in other countries, but it means one injection (one buttock!) rather than 2. It might be worth asking your onc about. I sarted MMM chemo last week to try and get my lung disease under better control - I'll be sure to let you know how successful it is over the next few weeks. Fingers crossed! Xeloda has been mentioned as another option for me too.

Thinking of you

Belinda

 

 

Thanks Kathy.

Yes I do have down days and I usually write them up and save them in a file I have on the computer.  Good therapy and I can say whatever I want without offending or upsetting anyone.    I think one of the things I have learnt is to recognise when I am down and I really work on getting myself back up.  i don't like the thought of staying low for too long.  We all have to have our down sides but we just have to learn to realise when we have been there long enough and give ourselves a shake up.

Take care and I wish you all the best.

Tracey xx

Thanks Sam, you are one of the people who absolutely amaze me.  The Herceptin is being scrapped for me too.  They have never been sure whether I needed it or not as all the tests on the tissue samples have been inconclusive and they even did independant testing.

I am hoping to keep on working if I can.  I work as a kinder assistant so hearing about the fatigue is a little bit of a concern albeit a small concern.

How long have you been on the Xeloda?  Do you feel that the side effects etc are improving at all?

Thanks for you advice and support Sam.  You are always in my thoughts.

Take care.

Tracey xx

Thanks Nicole.  You try not to get influenced by the markers and the ncologists tell you not to worry but they are the ones who react first when the markers go up.  So how do you not worry.  I know I will probably start the Xeloda straight away as I am concerned about any other floaties that might have got away while the other one was growing.

Hope everything goes well for you.

Take care.

Tracey xx

hi tracey, yes you are the one who usually gives great advice and  straight forward approach.

i cannot help you with your decision about starting xeloda, or waiting a while?

i admire you and sam for facing things head on, and showing us you are leading as full a life as you can right now, with your families. i am sure you must have your off/ down days too.

i get  fatigued myself these days. i am not sure if it is the chemotherapy i had initially in 1998. i feel i go in second gear a lot of the time now, along with aches and pains, but i have learnt to try and accept what life throws you, is the best way.

sending love to you both. you are an inspiration to us.

 hello to nicole also. kathy.

Hi Tracey,

I know what u mean about asking when ur normally supporting-had to do that recently myself (as u know). I was on Herceptin when we found the spread to the brain. I am now on daily tykerb (growth inhibitor like herceptin) and xeloda 14 days on 7 days off cycle. The main side effect is fatigue. I always feel after the first few days of each new cycle my muscles (mostly in my legs) are 'spent' -like i couldn't walk far without needing a rest. Nanna naps are common-almost every day (especially when i am on both drugs as tykerb has the fatigue side effect too). Also it seems to effect my sight-i have waves or lines come in and out of my vision-which is just annoying. At least i have had some good results, so i know its working-so far.

Try not to think too much about the tumour markers-thats ur oncologists job-they can analise the results and recommend the best option-u have enough to think about. I wouldn't have any idea what my markers are!!

Hope i have helped a little, its great to be able to come here and ask questions and get support

Good luck with ur decision..

Sam  :)  xx

 

 

Hi Tracey,

Sorry to hear the not so good news - it's sooo frustrating when it continues to grow while you're having treatment!  How nice they've given you options - but it really depends how you feel about taking a break from it.  It's fantastic that no new spots have shown up - that's something to celebrate!

Tumour markers do my head in - I seem to be obsessed with them rising and rising each month, despite treatment.

I'd get onto the next treatment straight away - but that's me - and everyone is different.  Sorry I'm unable to offer any feedback on Xeloda.  Hopefully someone else can help you as you're usually the one helping everyone else with their queries.

I think it's wise to go with whatever your oncologist recommends too.  After all, they're the professionals! 

xoxo