Now been diagnosed with lung, liver and bone mets!!

Following my diagnosis in November 2011 - they have decided that i Know have all 3. Never did anything by half!
Anyone out there in a similar postion?
Need some inspiration.
Also diagnosed with multiple clots on lungs - although they do not seem to be bothering me at presentand now on fragmin.
Had a repeat ct - amd all secondaries appear to be responding to Xeloda. Had to start Zomata yesterday (think that is how you spell it!)
Many thanks
Anne xx

What a shock for you Anne…you will find both support and inspiration here. I was diagnosed stage 4 from the very beginning in 2003. Over 8 years later I’m still here and I’m also on Xeloda and have been for nearly 4 years now. I will remain on this chemo until it stops working. Many of us with secondaries have had really good and lasting responses to this chemo. And Zometa is a very effective bisphosphonate. Good Luck and Best Wishes…x

Morning Anne, Yes, I too don’t do things by halves…diagnosed with all three in October 2009 and given a very poor prognosis…but like Belinda says, I am still here!

I have had two lots of chemo since secondaries diagnosed and the last lot included Capecitabine(Xeloda), I am still on this and, as of last November scan, it was still working. So, good luck and I sincerely hope it works well for you too.

Sue x

3 weeks ago I also got the news after 8 years since initial diagnosis that I now had secondaries in lung (lymphagitus) bones and liver. I just can’t believe that I’ve been going for regular checks throughout and wham it’s back…with a vengence! Have started pacitaxol chemo (12 in store) and zometa for bones.

Hi Anne and Joan

Welcome to Club Mets and sorry you find yourselves here :frowning:

I was diagnosed stage IV from the start with liver, lung and bone mets after my first routine screening last June at 49. No symptoms then or now.

Have had 6 lots of chemo (FEC x3 and TAX x3) and am now on Tamoxifen. CT at the end of the month to see what’s happening.

I feel very well and have gone back to work full time. Keep breathing. Day at a time. Lots of positive stories out there. Feel free to PM me if you want to chat.

Hugs

Laurie x

Hi Guys

Thank you so much for your comments - gives me some hope tha I might be around longer than I initally thought.
Strangley feeling really well- have just had a 2 week chemo break because was poorly - complete and utter exhaustion and terrible hands and feet - all recovered now.
Repeat CT looking good and bloods amazing- long may it continue.
I am very lucky and have amazing support from my family and my amazing friends - who have made such a difference.
Little bit about me - diagnosed 4 years ago - with 19/30 lymph nodes affected and vascular invasion so sort of guessed it would be back at some point!
Have 2 children 9 and 7 and now aged 44.
Love

Anne x

Good to hear positive stories. Like you Anne I had vascular invasion initially and just knew that with my luck it would return someday. I suppose I am grateful I’ve had 8 good years where I’ve travelled a lot. Seen my son married and had a first grandson. Just hoping and praying that the chemo works to give me some quality time… Anyone taking Prednisolone for breathing? The problem I’m having at the moment is sleeping whilst having the chemo and being on the steroids… I’m wondering why Xeloda hasn’t been mentioned - I’ll ask my oncologist on Wednesday when I see her.

Joan

Ask your GP or onc about a sleeping tablet called Zopiclone which is quite gentle and gets you off to sleep. Doesn’t give you a hangover feeling in the morning like temazepam. It comes in 3.75mg tabs and I took this dose or 7.5mg (when I had aches and pains in the night after TAX) with good effect. What chemo are you having at the mo?

Laurie x

I am taking Zopiclone but find it does leave me with a hangover feeling - although maybe that’s other side-effects of the chemo/steroids. I am on weekly Paclitaxol and also Zometa for bones. I’ve been for a session of hypnotherapy today to help with sleep and relaxation so am hopeful that might help. At the moment I am up for anything to improve the situation…

hi ladies,
since i have joined this forums its have help me know end with this horrible illness, but today i was told that i have multiple lungs mets, my oringinal dx was sept 2010 with ibc,my chemo starts tomorow which will be taxol plus going back on herceptin, it is nice to see i am not alone there are so many ladies with secondrys, and hope you are all well has can be.x x

Hi Lolly

Sorry to hear about your recent diagnosis but hop[efully Taxol and herceptin will kick them to the kerb! Good luck and hope your SE’s are very few.

Hugs

Laurie x

Hi Lollypop59,

As Laurie has said sorry you’ve had to join our club, but at least you’ve found some support with us ladies living with secondaries. I also have multiple lung mets to both lungs dx the same time as primary last March, after chemo, surgery and most recently rads these mets are now ‘tiny and stable’, I am now on tamoxifen/herceptin combo which seems to be working (lets hope for a very long time).
Good luck with the taxol/herceptin combo I’m sure they will work, if you want a chat anytime please pm me (private message)

Sending you lots of hugs
love and light
sarahlousie xx

Hi lollypop

I am sorry to read that you have had this news and wanted to add that you are very welcome to contact our helpline for further support ideas and a listening ear, the lines are open 9-5 weekdays and 9-2 Sat on 0808 800 6000

I am posting a link to the BCC secondaries information page which you may find helpful:

breastcancercare.org.uk/secondaries

Take care
Lucy