Hi Everyone,
Have only just found this site which looks really suppportive and helpful so this is my first post which I hope I post correctly.
I was told in January 2011 when I felt so ill I thought my end was nia that my cancer had spread to my bones, liver and lungs. Prior to that I had initially had a mastactomy in 2009 and seemed to have recoved well from all the treatment and was back at work.
I am now on Taxol and Avastin and am just at the end of cycle 4. Should have 6 cycles. The tumour markers having initially dropped dramatically now seem to be stuck, having dropped from 1227 to 680. The last reading has gone up slightly to over 700 which is a bit depressing.
I had two scans last week so hopefully they will show what is actually going on because I am now pain free and off pain killers and have been since cycle 2. I feel so much better and am able to do much more around the house but do get frustrated by not being able to do all the things I would like. I have to keep reminding myself to be kind to me and that things will improve.
My chemo nurse says if the treatment is not working my oncologist will change it, probably next week, a prospect I am not looking forward to but will accept if needs must.
Realised at the end of last week that although I have been really careful to try and avoid infection I have Shingles which although sore on the actual rash does not seem to be causing too many other problems now I have some medication for it.
Its my 60th birthday this week and so it would be really nice to have some good news.
So pleased to have found this site with such positive comments from women who really know what living with this disease is like
Cleomie
hi
My TMs remained static too on tax,I did 16/18 weekly. Today I should have been in the chemo suite, but yesterday onc told me that there was no benefit to having the last two. Instead I shall be on Capecitabine (Xeloda)and Lapatinib, both of which are tablets. Fingers crossed that they work. My onc is aiming at remission, with a view to mx soon…I hope.
x sarah
Hi - Glad you have found us! I am also on Taxol and Avastin - 7 down and 11 to go!! I have TNBC and its spread to my bones and lungs - PANTS basically!!
Interesting you have had Tumour markers done - my ONC was not keen but I wish I had a way of monitoring it rather than just waiting for scans and the ‘scanxiety’ (sorry Sarah - your term but it fits so well!!) is horrid! I hope your increase is due to something else?
Fingers crossed for you and cyber hugs coming your way! I have heard such good things about Avastin and think we are lucky to be on it!
Anyway - enough posting best go and do the stuff ive been putting off all morning!
Sadie xx xx
H Cloemie
Sorr you have had to join this forum -but glad, like me, that you have found it so supportive. I was diagnosed just over a year ago and have had several treatments since then for liver, lung and bone mets. I did not respond well to the hormone treatments of Arimidex or to Docetaxel chemo but, finger-crossed, the Capecitabine chemo is now working. I got upset when certain treatments did not work but it does seem that our Oncs have lots of treatments on offer and it’s about finding the one/s that work for you individually so good luck with your new treatments that they offer you. I got a virus like Shingles when on FEC and then thrush when on Docetaxel - I think our bodies throw out these viruses when we have low immunity so hope the Shingles is being managed ok
Your 60th - congratulations - mine is next March so I’m hoping to feel better by then with less chemo in my blood. Hope you find a good way to celebrate this landmark! Are you still working? I’ve just decided to take early retirement since 59 is ok to finish and I’d rather have time to focus on health and family - but it’s not been an easy decision
take care and do keep in touch
Fran
H Cloemie
Sorry you have had to join this forum -but glad, like me, that you have found it so supportive. I was diagnosed just over a year ago and have had several treatments since then for liver, lung and bone mets. I did not respond well to the hormone treatments of Arimidex or to Docetaxel chemo but, finger-crossed, the Capecitabine chemo is now working. I got upset when certain treatments did not work but it does seem that our Oncs have lots of treatments on offer and it’s about finding the one/s that work for you individually so good luck with your new treatments that they offer you. I got a virus like Shingles when on FEC and then thrush when on Docetaxel - I think our bodies throw out these viruses when we have low immunity so hope the Shingles is being managed ok
Your 60th - congratulations - mine is next March so I’m hoping to feel better by then with less chemo in my blood. Hope you find a good way to celebrate this landmark! Are you still working? I’ve just decided to take early retirement since 59 is ok to finish and I’d rather have time to focus on health and family - but it’s not been an easy decision
take care and do keep in touch
Fran
I’m very sorry that you have joined, and hope you will find the forum helpful (as I do).
I would say the thing I have found most difficult is achieving a balance between recognition of the reality of the situation, while preserving hope. When I was first diagnosed with secondary BC, my first thought was, that’s it then, I’m going to die, but now I realise that none of us can predict the future. In point of fact, about 5% of people with stage 4 go into complete remission, and the cancer never returns. Also, we could survive for years, or get run over by a bus, or scientists may discover a cure next week - you just don’t know. As hard a it seems, just take each day as it comes, and if you can try and recognise the little positives (because actually they are there).
God bless.
Hi Lemongrove,
Thank you for you sound words of advice. It was my 60th birthday yesterday which I thoroughly enjoyed due to the support of family, friends and colleagues and I am looking forward to an equally enjoyable weekend. I am a lucky lady.
You are so right when you say we do not know what the future holds for any of us and I know how fortunate I am to be able to take advantage of the advances in treatment.
One on my sisters has had two different types of breast cancer and has lost both breasts and the other has calcifications but we have been told it is not genetic it is a cluster! As two of us have daughters our hope is that the advances in research will protect them and they wil not have to go through similar experiences to us.
Thank you for you reply.
Cleomie
Hi Fran,
Thank you for your helpful comments. In January when we eventually realised what had happened and I was so ill I could hadly move the decision to retire was an obvious one. My job as a Deputy Head was highly stressful and very demanding but I enjoyed it.
Having watched a colleague who had continued to try and work and then lost her battle with breast cancer last May, I decided to put myself first take away the stress by retiring, so I agree with you.
For me the decision has been the right one although the shock of going from a busy, committed professional to on occasions staring at the wall unable to move very much has been at times difficult to come to terms with, particularly as the chemo kicked in and I have felt so much better.
Now I have sorted myself out with a number of little projects that I am keen to pursue and although the concentration and physical strength to do them is not quite there yet I am optimistic that I will get there.
Under normal circumstance you would have time to prepare for retirement and think about how you really want to spend your time.
My husband and I have now started a bucket list (have you seen the film) which hopefully we will be able to enjoy together, ranging from small to larger pleasures.
At the moment my pleasure is how good my garden is looking despite the lack of rain.
Cleomie