Bones,Liver,Pleura,lungs and aorta - chemo

I have Secondary BC in all the above. first diagnosed 1999 second 2003 and now secondaries. I am going for a Liver biopsy on Monday. then info session on 8th July then will start on which ever cocktail they decide. Don’t know if HER2 pos yet. Not sure on prognosis, but it is good to read about people still there after quite a while. I have not finished my life yet and need some hope.

Hi and welcome to the club that none of us want to be in but gives us so much support and friendship. Well cyber friends who become as important as our lifelong friends.
I have secs to liver and bones diagnosed May 2004 and still going strong even though at times it has been a very wobbly ride.
It wont be long before others are along to welcome you. I have my 2 daughters here for a visit and we are going for a Chinese for will have to keep this really short. Sorry.

Love Dbsxxx

Hi there Gill. I can understand how shocked and scared you feel. My secondary diagnosis (liver and lungs) was a year ago - almost to the day - and the medical report at that point was less than two years if I failed to respond to treatment and potentially many years if I did. However a year on, after taxotere and then arimidex I’m feeling very well, am back at work full time and the cancer is stable/shrinking. I know it’s going to get worse but I certainly don’t feel my life is over - and nor need you. This disease is so unpredictable and this forum is fuull of women who have been living full lives for many years. all the very best

Barbara

hi Gill

Sorry you are here with us in the club no one wants to be in…it really sucks. I had my first cancer in 2003 and secondary cancer in November 2007 with liver and bones. Still here 8 months later, working and carrying on reasoably well, My last visit to the Onc showed that my narkers are holding…so there is life after a secondaries diagnosis, I certainky dont feel that my life is over yet but we do have to live with this horrible undertainty.

Are they doing the liver biopsy to test the HER status ? That would make sense…have they given you any idea what chemo you will have? There is tons of information here that you can get from this site, I actually found taxotere OK and worked all the way through it, although i did get very tired,

Hope you are holding up OK, let us know how liver biopsy gos and then mabe more about yourself etc

lots of love

Cathy

Hi Gill

Sorry you have had to join us but hopefully you will find a lot of support and information here. I was diagnosed with liver mets a year ago nearly 5 years after my primary dx. Real emotional rollercoaster since then but you do adapt. I certainly have found that keeping life as normal as possible (it is definitely a new type of normal though if that makes any sense at all!!) helps. I really like my life as it is, so get huge enjoyment out of continuing working and spending time with family and friends. Don’t feel my life is over at all though I do know it will be shorter than I would like - so am cramming it full of lots of good things as much as I can! Am back working 4 full days a week and like Cathy worked throughout chemo last year, though reduced my hours. Am now on a different chemo (xeloda which comes in tablet form and you take at home for 2 weeks out of 3) and on the whole finding it pretty tolerable. It also appears to be working well for me - tumour markers dropped dramatically after just 1 cycle. There are lots of treatment options out there though which is encouraging.

I also find it is always easier once I know what the treatment plan is etc. And there will be lots of people here who will be able to advise about potential side effects etc.

Don’t know where you live but there are several groups from this forum who meet every so often. I’ve met several people this way and it really helps to be able to talk face to face. Let us know if you might be interested.

Do let us know how you get on on Monday and at the session on the 8th.

Sending you lots of cyber hugs

Kay xx

Gill dont want to hijack your thread-

kay saw your news about markers - thats really really great, thrilled for you!!

love
Cathy

Sorry you’ve had to join us. Everyone is really helpful. I was diagnosed with secondaries in sept 06 with bone, liver and lungs and now has spread around my heart but still here although just finished a course of radiotherapy to shrink tumour so not my usual self.
I’ve done a lot in the last nearly 2 years despite a lot of chemo. hopefully, you’ll benefit from the chemo and will b with us for along time.
Kate

Hi and welcome-from a relatively new memeber here.Originally diagnosed in 1996, with secondaries confirmed to lung and liver last October, I’m working my way through treatment. 3 months of hormone treatment didn’t help (I was subsequently diagnosed as HER2+), so have just completed my 4th cycle of taxotere and herceptin. Like you, I too am anxious to hear positive good tales of people doing well-and hey, let’s plan to be success stories in our own right!
Good luck with your appointments. I also have an important one on Monday, as I’ll be getting the results of the latest CT scan, so may be back with some good news to help you on your way!

thank you so much everyone!! you all give me hope as the onc could not. I don’t blame him, what can he say?
I am not looking forward to Monday, but am to the chemo because that will be good- in a round about sort of way. The Biopsy is the key tho’ so off I go; very glad to hear I will be sedated for it!

I am in Sussex.

Hi Gill,

I don’t have quite so many sites for my mets but I was dx last year with bone and liver mets a week after my primary dx.
That was a year ago. I had 8 loads of taxotere and I am currently on herceptin and biphosphates for my extensive bone mets.

I managed to get through the chemo with only one trip to the hospital and was given antibiotics to prevent future visits.

I tolerate the other drugs well and they have kept me stable since chemo stopped in November, infact my liver function has improved(even if it is only slightly)

I thought I was a goner this time last year but I am back at work as much as all my treatments allow and lead a ‘normal’ life

Best wishes in starting your treatment

Kate xx

Hi all

Sorry for going off topic, Gill, but just wanted to say to Cathy that I too am (obviously !!) thrilled about the drop in my markers - over 400 to 306! Really hope that scan will confirm all going well - have to wait another month.

Gill - I am in Surrey (Guildford area). We are trying to set up some regular “meets” for those with secondaries. Don’t know whether you would like to join us (I’ve certainly found it very helpful, though also quite scary initially!) but if you check out the thread “another Cinderella meet” you’ll find we are planning to meet on July 24th. Cathy and Kate are also hoping to go.

Glad that our ramblings have helped a bit. Do let us know how you get on on Monday.

Love Kay

Gill - Hope you got on ok today let us know the results. I have liver and bone mets dx May 2006, I am on Xeloda and Zometa and do not appear to have many side effects. I am also making the most of my time going away for weekends with OH. Holidays with family probably doing more now than before.

Elaine - Hope the results of your CT scan are good.

Kay - Thats brilliant news re your tumour markers that Xeloda is certainly doing the trick.

Love Beli x

I have survived the Liver Biopsy - without sedation! I only had the one bit taken though. I had said they could take 2 extra for the Brit Study, but it hurt at the final snip and I chickened out of 2 more.
Will -hopefully - have results in time for Chemo info session next Tuesday.

Thanks for all your support, will keep you posted.

I like the sound of meeting up, will see if I can, depending on my timetable when I start Chemo. Thanks for the invitation.

You brave girl - I would have asked for full sedation. Hope the results are OK.
Kate

Wow Gill, i didnt’t see this the other day…I would have been knocked on the head for that.

Cathy

ok the chemo starts on monday
Epirubicin to start with at least. may change WHEN I get the histology results. There is a delay due to lack of staff. I played merry what’s it and they said I should start on this and change if my HER2 test is +.

any hints and tips appreciated - I have read Top Tips and am prepared with ice lollies and water.
Thanks for all you help ladies
yours in terror