10-11-2018 09:23 PM
Hello Sarah Senior... hope you are feeling a bit better now. I'm on my 3rd cycle of cap and for me its the feeling of a complete lack of energy thats the worst side effect.. Apart from having intravenous chemotherapy I have been on letrozole and exestamene which didn't work, then tamoxifen for a few months which then stopped working..hence we are now trying cap. As for the tumour markers, I can't actually remember what number they gave me. I think it was around 400 which was a big leap from the previous number. They haven't taken the TM in recent blood tests...the Onc omitted to request them, but they requested them on my latest blood test, and should get the up to date info at my next review in a couple of weeks.
All the best..Carolyn
10-11-2018 07:18 PM
Hello to all the ladies on here, I of course didn't know Barton but send my condolenses as it is always sad to hear when someone has lost their struggle.
I am now joining this thread as having been on letrozole and pabociclib for only two months it appears that it wasnt working for me sadly so fingers crossed that the cap is more effective.
I am only starting my second week and feel out of sorts so hoping that my body adjusts to it.
I see that a number of you mention tumour markers and just wondered that for those of you whose are going up what level is normal and how much do they tend to go up.
I guess that I am struggling at the moment as all I can think of are the oncs comments in relation to timescales due to the fact that the first traetment didnt work. I am finding it hard at present as well as much as i have a very suportive network of friends both my daugters have gone away in the last couple of months one to go travelling and the other to go to uni and I know that my youngest is struggling with things.
Hopefully I can take some comfort and support from this forum and knowing that so many of you are doing well on the treatment.
10-11-2018 02:20 PM
09-11-2018 11:01 PM
09-11-2018 10:50 PM
So sad to hear about Barton.........fran. I never met her but of course read her posts on these forums. She was always so welcoming, helpful, and caring. She is safe now of course, but her wonderful sister will miss her down here. So hard to miss loved ones. But heart warming to read all the warm comments. She was loved and so appreciated. Fly high, Fran.
09-11-2018 09:05 PM
08-11-2018 06:20 PM
So sorry to hear about Barton/Fran, another lovely lady lost too soon. Do send my condolences to her family if you are in touch and sending hugs to you. Thank you for letting us all know.
08-11-2018 12:58 PM
08-11-2018 12:51 PM
08-11-2018 11:47 AM
hope me you don’t mind me joining in, especially having read the sad news about someone you obviously all cared for.
I started cap today after EC and Pax chemo, surgery then rads. Apparently the cap is because I’m triple negative and the chemo while it had shrunk the tumour significantly there were still live cells. My onc wants me to to this for 6 months (8 cycles) if I can tolerate it. I had minimal side effects with the other chemo but the daily dosage of this stuff and only a week off in between makes me wonder if I could be in for a rougher time.
Any advice on practical tips for being able to stay ‘normal’, I’ve only recently really felt like I was no longer a patient and this feels a bit daunting. Also am I likely to loose my newly returned hair, the chemo nurses were a bit vague when I asked this and said ‘maybe, maybe not’ which wasn’t the most helpful answer.
07-11-2018 10:42 PM
07-11-2018 03:50 PM
Thank you Carolyn for letting us know about Barton. Please pass on our condolences to Bartons family.
If any of you would like to talk to someone, our free Helpline is here to offer support. 0808 800 6000.
Digital Community Officer
07-11-2018 11:25 AM
07-11-2018 08:55 AM
Hello Carolyn, I am so very sorry to read this, and for your loss of a lovely friend. I never met Barton but as you know I was very fond of her and I missed her greatly when she stepped back from the forum. Sending you, and her family and friends my condolences. RIP Fran xxx
07-11-2018 08:37 AM
Oh Carolyn, so sorry to hear this sad news about Barton. As you said, she will be at peace now. Please send regards to family and let her sister know we are thinking of her.
07-11-2018 08:21 AM