Has anyone else been through this?
Tomorrow is my third and final FEC (also had 3 Docetaxol alongside a trial of Avastin). The trials nurse was thrilled I got on the trial and said the results were amazing in the other ladies on her trial so I was really expecting a better result. But, after an ultrasound after the 3rd cycle which showed no change, today I’ve been to see the Oncologist and she measured the lump and says there is hardly any change. I burst into tears at the news and embarrassed myself I’m afraid to say.
She says I will get a letter to have a mammogram in 3 weeks to get measurements etc, she will discuss things with the surgeon and they will discuss the next step - which I am hoping will be a mastectomy followed by rads.
It’s just this waiting that’s getting to me and knowing that I’ve been through hell with the chemo and it hasn’t done it’s job.
Has anyone else had this happen to them?
Hi so sorry for u I had 3 fec 2 tax but not in trial fec work but tax didn’t make mine grow even though they say it just didn’t work I’m going through chemo again for sec now in lungs and am worried not work gd luck Laura
FEC was great for me, but tax didnt work. Lump still not operable. on capecitabine and lapatanib now , i also have bone mets, crossing fingers and hoping for the best. All I can say is at least you have not had progression. Its a horrible place to be when treatment doesnt do its stuff.
x sarah
Hi Flapjack
Sorry that you have found yourself in this position, it does put your mind into overdrive doesn’t it. You go through all the side effects and can’t see anything for it.
I was on the Avastin trial too, though drew the standard treatment, 3 Tax and 3 FEC.
Like yourself my tumour decreased only very slightly and at the last ultrasound showed a satellite area as well. I needed the tumour to shrink as I have IBC and the breast was too swollen to operate initially.
However, having seen my surgeon he said that although the tumour hadn’t shrunk significantly the area around the breast was less inflamed and the breast was mobile enough now to carry out the mastectomy on the 22nd June.
I hope you get the go ahead for your mastectomy as I did and as some lovely ladies on here said, there are a lot of different types of chemo and when some don’t work, this does’nt mean that others won’t. I hope we can both move straight onto RADS but if more chemo is needed there are more options available.
Good luck for your mammogram, hope you get the go ahead for your mastectomy and hope to see us both having RADS before we know it.
Easier said than done but please try not to worry too much and please pm me if you want to chat at all.
Sending hugs
xxxxxx
Scrapper
Thinking of you and the disappointment - I had success with FEC but not with TAX so know the trauma involved. Don’t worry about crying -I did the same with some of my results and one thread recently showed that many of us do; this is all very emotional stuff coping with SEs and results etc. and that often comes out at result appts. What they didn’t tell me from the outset is that many research studies only give a 40% chance of success for any chemo - glad I did not know it from the outset but it is the reality check I needed to know that a chemo not working is really quite normal and to keep hoping that another one works better - hoping this is the case for you.
Hi Flapjack. I had 3 Fec followed by 4 Docetaxol. The Fec didn’t work but the Tax started to shrink the tumour but it was still quite large when I had Mx on 1st June. Seeing onc tomorrow fir results and to plan rads. Have lots of questions to ask.
Polly
My goodness, and there was me thinking I was the only one who’s lump hasn’t shrunk and you ladies have or are going through it too. I’m so sorry you’re all going through this too but in a way it’s reassuring to know I’m not alone. I hope you know what I mean.
Pollypocket, good luck tomorrow with your appointment. Please come back here and let me know how you got on. It’s 2 weeks after your surgery and I was wondering how you’re feeling and coping. I am quite terrified of the op, if I’m honest but of course know I have to go through it.
Frances, I’m glad no-one told me those statistics. But at least it seems there are other options.
Scrapper, I think mine is IBC too. The symptoms were a very swollen, red breast which I initially thought might have been mastitis. I’ve always been lumpy (cysts) so wasn’t too alarmed at the lumpiness. But of course now I know better. It’s much much less red and swollen now. In fact, the oncologist, at the last but one appointment, said although the ultrasound scan showed hardly any reduction at all she could tell just by looking that it had “clinically shrunk” whatever that means. I’m hoping my breast is "more mobile"as you put it. It certainly swings about a bit lol. Wishing you luck with your mastectomy on the 22nd. Are you prepared?
Laura and Cromercrab - good luck with your treatment. I hope the new drugs do their stuff.
Can we all hold hands while we’re going through this?
Flapjack xxxx
Flapjack - there are loads of options - these forums have given me so much info that has kept me positive. Glad you are sharing with us all - otherwise we could be a very lonely place at times.
Best wishes and here’s a strong hand to hold (I’m having a good day but am sure I will need this reciprocated at some point!)
Flapjack I have been amazingly fine since the mx. Hardly any discomfort. I was out and about virtually straight away. Drain was taken out after 3 days and I was going out shopping/ lunching straight after. I felt great. Kept waiting for pain to start and it didn’t. Will let you know what happens tomorrow.
Love Polly xx
Ps I haven’t had immediate reconstruction because of rads. Bought some mx bras and the BCN gave me a temp prosthesis. You can’t honestly tell which side is false. Keep asking people to guess(not strangers obviously).
Xx
Morning all.
Frances, you’re right - it’s important to have somewhere (here) to come for advice and hand-holding when the going gets tough.
PollyPocket, it sounds as though your mx went really well. I hope (if they decide to go ahead with mine) that it will goes as well as yours. I really am a wuss when it comes to pain. I’m not bothered about a reconstruction tbh. I’d rather get the rads out of the way and do what you’ve done -wear a prosthesis. Let us know how you got on today.
I’ve got my final FEC this morning so will be in for about 5 days of sickness and nausea. The tablets haven’t been working (domperidone and cyclizine). They gave me some back up tablets but, when I read the leaflet, they were anti-psychotic drugs and the list of side effects were horrendous but yesterday my oncologist told me to take them so I will. Watch this space… lol
Flapjack xxx
I didn’t even realise chemo couldn’t work!! I thought it was so toxic and horrid it would always work. Learning something new every day! Can’t believe it can make us feel so horrid and then might not shrink the bl**dy thing anyway!
Thought you might be able to empathise with this and it might make you smile a bit:
sophiefeelsbetter.blogspot.com/2011/06/one-boob-wonder.html#comments
xx
Hi Flap jack I had MRI after 3 x chemo then again after 6th chemo both times it seemed to show no shrinkage I was distraught As I had had a metal marker put in and tattoes on skin to mark under u/s the outer borders as it was felt that the lump would shrink so much it needed marking I was filled with optimism. When I saw Onc and surgeon together they had decided my best option was a WLE and ANC and look at lump then ? 3 more chemo. The histology showed that the lump had reduced from 4 cm to 2.1 cms Even the surgeon waited until I woke up to tell me that he could see that the chemo had had an effect Hope you have better news too. J xx
Thanks for the link Sanytoes, I will look at it later.
Libby, sorry to be so ignorant, but what’s WLE and ANC? Glad you had good news after all. How’s it all going now?
Flapjack xx
Quote:
Very interesting, Francesw! I’d like to know more, please can you post the link(s)?
I had some progression of my liver mets while on taxol - “very disappointed” indeed, I was devastated! (Now on capecitabine, which is working well.)
WLE = Wide Local Excision (lumpectomy)
ANC = Axillary Node Clearance (removal of all underarm lymph nodes)
There is a glossary page on this site.
breastcancercare.org.uk/breast-cancer-breast-health/glossary/glossary
WLE is included but ANC isn’t!
Will try to find link - it was when I was on Taxotere and it did not work that I found stats and thought - oh well. Also when on Arimidex (hormone treatment) the Onc wrote report to my Occup Health and said it only had 40% chance of success… Hope Capecitabine keeps working for us both!
en.wikipedia.org/wiki/Docetaxel
ncbi.nlm.nih.gov/pubmed/1077683
a couple of research studies - the wikoipedia has lots of detail. If you search “taxotere resistance advanced breast cancer”, for instance, you will get access to lots of studies.
The issue seems to be at what stage the chemo is used - I’ve had Taxotere as second line treatment after 6 FEC so resistance issues seem to depend on whether it’s first line treatment of second or third. The resistance issue is one that medics can’t predict - so let’s hope we are not too resistant to whatever treatment we are currenty on or that we move onto if we are resistant.
Yep - I thought and hoped chemo was foolproof initially as it’s so toxic but the biochemistry seems much more complex…
Hi all. Had appt with the onc on Wednesday to get results after Mx. Although the lump was still fairly large there were a lot of dead cells inside it so although I thought the chemo hadn’t worked as well as I hoped it had done a lot of ’ hidden’ work. I had a lot of questions to ask her as I was convinced that it had spread. She really put my mind at rest. Had planning appt for rads today and they start on 6th July. Only have to have 4 weeks so will be finished in time for my hols. Hope everyone else is doing ok.
Polly xxx
Thank you all for your replies. I thought I would come back and let you know how I have been getting on.
I had my last FEC about 4 weeks ago and am now feeling more like my old self. I had another ultrasound and mammogram a couple of weeks ago and got the results on the phone last week - the tumours have shrunk. Today I met with my surgeon and he showed me the scan and mammo pictures on his screen - before and after so I could see that there was a marked difference.
He wants to go ahead with an mx and I have a date for 5th August so feel relieved that things are going to plan. I will get the results a fortnightlater and details of my radiotherapy and Tamoxifen.
Thank you again for your replies.
Flapjack xxx