Capectibane

[Jampot79]

Hi, my wife has finished chemo (EC + Pax) and had surgery 2 weeks ago. Results of pathology was nodes clear (no sign of ever having cancer), and clear margins. There was just 1.5mm of residual cancer found. Tumour at beginning was 23mm. 

The oncologist was very undecided about whether Cape was to be offered as residual was tiny and nodes always been clear. (He did say that if my wife had delayed surgery by a few weeks that there was a good chance the chemo still in her body would have got rid of that last 1.5mm). 

My wife has decided to do Cape which oncologist totally respects. He did say that it is generally offered to people who have node involvement or larger residual, but wife wants to do everything possible. 

How have you ladies been coping with Cape? What have been the biggest side effects for you? 

So much respect for all you ladies going through treatment. Hope you are all well. 

[amy46]

@Michelle21  @fizz 

Thank you. I was so grateful to receive the messages of support on this forum

last night, I just couldn’t respond at that point as I felt too tearful. So hard to tell what’s going on in my body right now, emotional upset, chemo or the start of the menopause. It’s just hard to keep things in perspective when I feel like this but your messages of support and understanding really help xxx

[Michelle21]

It seems it is widely offered on the NHS. 
@amy46 & @fizz I think the worry of recurrence is something we have to learn to live with and manage the anxiety. It’s worth trying to put it in perspective that more people don’t have recurrence than do but of course that doesn’t help if you are the one that does. I have 4 friends who all had TN in 2018 and (touch wood) none of them have had a recurrence. Also stats are always out of date as new treatments are being developed all of the time. These are the sort of things I try to tell myself when I feel the anxiety rising but I agree sometimes nothing seems to cut through that. Xx

[fizz]

Hi Amy 

I’ve been really struggling with fear of recurrence lately too. I was so positive in the beginning but the longer everything takes the worse I feel. I was diagnosed in October last year and just feel I’m running out of steam for positivity some days. Hopefully it’s a blip and those anxious thoughts will subside again for us all. 

Gill x

[fizz]

Hi Salster38

I am having it on the NHS. I don’t know what the criteria are to be recommended it but it’s worth bringing it up and seeing what they think. 
I was told I was recommended it because I hadn’t had a complete response to the initial chemo. 
Good luck with your next step of treatment. 

[Salster38]

Oh ok I think I’ll discuss it with my onc anyway to see what he says. 
I had 3 x EC now 8 in to 12 paclitaxel and doing ok most of the time. 
mom exactly the same with the fear of reoccurrence I think I’m doing ok then any ache or pain I think it’s spread and also when you hear stories about others. It’s tough isn’t it but I try and refocus on the present and getting through each step as it comes. Try and be kind to yourself you can’t be positive all the time in this awful cancer rollercoaster! 
have you finished active treatment? X

[amy46]

@Salster38 I am the same as you, surgery first as they couldn’t decide the her status from biopsy and negative sentinel node. I think they only give this drug to people with positive nodes but I might be wrong. 
which chemo are you having and how are you getting on? I was doing well but the last few days I’ve been horribly anxious again. Just keep thinking it’s going to come back. I’ve been able to keep really positive in the main part but sometimes it just gets too much. 
@Michelle21  I read your other post. That sounds like a much better consultation, what a relief x

[Salster38]

Hi, 

I have TNBC too but had my surgery first, lumpectomy and sentinel node biopsy- lymph nodes not involved thankfully. I’m coming to the end of my chemo with radio next step. My oncologist hasn’t discussed cape yet but I’m really keen to try it - anything to reduce risk of reoccurrence! Just wanted to check before i discuss it with him are you receiving this on the NHS? 
Thank you

[fizz]

Hi Michelle

Yes the hands and feet side effect is the one I’m most worried about too but I’m moisturising lots and hoping for the best. 
All the best to you as well 

Gill 

[Michelle21]

Hi Gill thanks for your reply, your situation sounds similar to mine. I didn’t have a complete response either and when they took out my lymph nodes there were 6 with traces of cancer on them. My oncologist has put me on it for 6 months, I have read the research and it sounds promising.  It’s great to hear you haven’t had any side effects. I am a bit worried about the S/e of sore feet as I do a lot of walking and running, but I will have to wait and see I suppose. 
Wishing you all the best for the future xx

[fizz]

Hi Michelle 

I am taking capecitabine for primary TNBC. I didn’t get a complete response to my first chemo and my SNB showed a small tumour in a lymph note that hadn’t showed up on scans. 
I’m doing 8 cycles of this but I’m only 2 weeks in so can’t tell you too much about it but so far I’ve not really had any side effects to speak of. 
I didn’t read any research on it but my lovely oncologist definitely thought it was worth doing. 
Gill 

[Michelle21]

Thanks for the info @omerabbas and for sharing your wife’s situation. 
I will have a read through of the research. 
best wishes going forward for you and your wife.

[omerabbas]

My wife's oncologist has prescribed us Capecitabine for 1 year. We are still confused about whether to go for it or not as it is quite new research. She was diagnosed with triple-negative breast cancer and has shown a complete pathological response to chemo and there was no residual disease left after surgery.

You can read this research: SYSUCC-001 "Effect of Capecitabine Maintenance Therapy Using Lower Dosage and Higher Frequency vs Observation on Disease-Free Survival Among Patients With Early-Stage Triple-Negative Breast Cancer Who Had Received Standard Treatment".

[Michelle21]

Has anyone been given this for primary BC? I am really interested to know who and when people are being prescribed Capectabine. I have heard it can reduce the risk of recurrence for TNBC.