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Amy's avatar
Amy
Member
15 years ago

Disappointing

Well...I have to say I am definitely disappointed...it seems that the Tamoxifen has not been able to stabilise the mets in my bones.  My tumour marker is still high and my last bone scan showed that the cancer has spread :(

I have had increasing pain in my lower back and left hip too so am going for another bout of radiation therapy from 18 July (10 sessions).  They will probably also do my cervical spine as there appears to be a new cancer spread there and they want to try and catch it before it gets worse.

So, the plan is keep on the Tamoxifen until after radiation and then get another blood test.  If the markers are still high I then will change to Femara.  Hopefully that will do the job.  If it doesn't then I think we'll be trying chemo.

The good news is that  it hasn't spread to any other organs.

This disease is so crazy though.  Apart from the pain in my lower back I am feeling fine, I look fine.  I'm sure people wonder whether I really do have cancer!!

So, trying to keep my spirits up.  My beautiful sister came to visit me from Darwin which was wonderful.  We had 10 great days together - to laugh, cry, drink wine and eat chocolate together!  I'm starting yoga again next week too.  I haven't done it for years so I can only imaging just how much my bones will creak when I try the poses!

I'd be interested in hearing about anyone's experiences on Femara too.  It hasn't been too bad for me on Tamoxifen - just hot flushes - so I'm really disappointed that it hasn't worked for me.

Oh, and to top it off - I think I may have the early signs of lymphoedema.  I have slight swelling in my palm and lower arm.  Can't get in to see the physio until 1 August.  Just keep on doing the exercises and trying to massage it and hope that it doesn't swell any more.  It's a bit painful but nothing I can't live with!

Sorry, I've raved on so long!

3 Replies

  • traxx65's avatar
    traxx65
    Member
    15 years ago

    Hi Amy,

    Just wondered how you were going?    Hope things are improving even just a little bit for you.  :)

  • traxx65's avatar
    traxx65
    Member
    15 years ago

    Hi Amy,  sorry to hear your news isn't better.  I know how you feel about the vital organs part.  That is a big part that helps me reset myself.  I was on Femara for about 18 months.  Same sort of side effects as with Tamoxifen (which I was on for nearly 4 years.)  I didn't experience much more than the hot flushes.  The only other thing I felt with Femara was I just never felt comfortable on it.  I really can't put my finger on it but deep down I think I was worried that it wouldn't be as good for me as the Tamoxifen had been.  Who knows, we can keep on guessing can't we.  I am on Aromasin now and have been since the 29th June so I will see how that goes.

    It is really strange feeling so well especially when they have told you that you have mets.  You think you should be feeling so terrible and yet you don't.  I drive my onc nuts when I bring that up every now and then.  I know that the year I was diagnosed everyone in my family had the flu so badly that it was lasting two weeks or more for them.  I got a cold for two days and bounced back and was looking after all of them.  I just thought if I was really sick then I wouldn't have bounced back so well.  So there must be a hidden strength in us somewhere.  I'm sure people wondered if I had cancer for the first five years too.  I didn't look any different or act any different.

    With the lymphodema try and raise your arm up and push the fluid towards your shoulder.  I have a small bit near my elbow and I eventually got into the clinic.  If you look on google there are lists of exercises you can do for it.

    Good luck with your radiation and let us know how you go.  Take care and I am thinking of you.

    Tracey xx

  • TonyaM's avatar
    TonyaM
    Member
    15 years ago

    I was so sad to read your blog.You are doing such an amazing job of trying to kick this bloody awful disease.You shouldn't have to cop these setbacks,just not fair.I'm glad your vital organs are ok.It's crazy but once we step into the cancer world we start being grateful for all sorts of afflictions.I hope your docs can get the bone cancer under control and your back pain is relieved.I think it's easier to stay positive when you don't have pain and feel healthy.Good luck in the coming weeks Amy,let us know how you are.

                                               Tonya xx