Just typed up a big epic and lost it in cyper-space…grrrrrr.
Anyway, I was DX with a 4.3cm tumour, left breast in Oct 2011. Started neo-adjuvant chem on 24th Nov, 3 x FEC and 3 x TAX. Have had all of the FEC and one of the TAX and an MRI a week ago. Saw the onc yesterday and the tumour has only shrunk by 3mm! He said he would have liked to have seen more shrinkage by now. Next TAX tomorrow and final one 14th March and he is now talking about me having the MX first week of April, but no immediate reconstruction as originally planned as I may need rads, or more chemo!!! When he said that I was quite shocked. I wish now I’d asked him more about that but he was a little bit unapproachable. Very thorough though, not complaining (wouldn’t swap him jobs for all the tea in China!) Anyway, I have been so strong and optimistic and stoic through all of this chemo but the thought of needing more chemo is scaring the hell out of me! I thought the whole point was to have this chemo before the op to prevent me having to have any after the op. Don’t mind if I need rads, it’s just that I’ve had enough chemo now
Anyone out there had a similar experience that can cheer me up?
Mxx
Oh Mabeline, I didn’t have the same experience as my tumor (which was bigger than yours) has shrunk considerably, but I still like to cheer you up and send hugs, have other trials with this cancer, as we all have, just different ones.
The reason they do neo-adjuvant chemo is too reduce the size of the lump prior to surgery, so they can get clean margins and none of the nasty cells are left behind, everyone is different and as you have only had one tax so far I would not worry too much the next 2 tax will probably do the job and reduce even more, I also had chemo prior to the mx and had 1 FEC then changed to taxotere due to secondaries 2 weeks after primary so had 1 FEC and 5 Taxotere my lump was 6cm and went down to 2mil only after all the chemo’s so please don’t be disheartened you’ve still got 2 more tax to go yet and it packs a punch on unwanted lumps. I think onc’s do things differently and treat everyone as an individual remember this is a very individual disease like I said before we all react to the treatments differently. I had my rads after the mx and am just recovering from them now.
Hope all goes well for you,
wishing you love and light
sarahlousie xx
Hi Mabeline,
I had a humoungous tumour (8cm start size) and had 3 FEC and 3 Tax neoadjuvantly. I am ER+ PR+ and HER2-. My experience wasn’t like yours, but hopefully might encourage you a teeny bit…
I started with a plan of 6FEC and a review at half way. I had quite a good response - textbook in fact - but it stalled after FEC3, so I was switched to Tax. The onc I saw said Tax is very effective at shrinking tumours but might take a while to kick in. For me it was very effective, however at surgery I still had a 2cm lump (though nearly all of that was scar tissue) and my lot did an immediate LD recon without an implant even though I had to have rads (scheduled all along).
When I spoke to my onc after surgery he said my response to chemo was excellent and with my kind of cancer as good as it would get - he had never seen anyone have their lump vanish with this kind and said the research supported that view. Some cancers, it seems, can have a complete pathological response but by no means all. Try not to let this get to you - you still have two Tax to go and they might do wonders at the shrinking job. You could maybe investigate if there are options for an immediate recon that they would do? My lot won’t put in implants pre-rads.
BIG MASSIVE HUG and hope you get some better news soon.
Sarahlousie, Christine and RevCat,
Thank you all very much. You have made me feel much better and you’re right, the tax is much stronger and at least it has started to do some shrinkage! RevCat, I will also investigate the possibility of an immediate reconstruction still. I have to learn to be more assertive at these meetings with the onc, as I’m too meek and don’t like to “pester” them, which I know is ridiculous, but hey, it’s the story of my life
Christine, you and I are running side by side here and I think you have TAX no.2 tomorrow too?? Good luck. I’ll think of you and you think of me!! I asked for stronger painkillers this time and was given Diclofenac, 50mg to take 3 a day for the 3 or 4 days of the bone pain. How did you get on?
Love and hugs to you all. xxxx
Maybe you need to bring someone with you who will be a bit more pushy than you are, and get THEM to ask the questions. They might be less easily put off by the onc than you are.
Yes 2nd Tax tomorrow. We were talking about stronger painkillers and she mentioned even Oramorph, but since I suffer from bad constipation after chemo she wasn’t keen, so she advised me to take Ibuprofen and Paracetamol before the pain starts and she hopes that will help. Last time I waited till it got really bad and painkillers couldn’t control it anymore. I didn’t know of course what would hit me, but now I know. She said I have to expect to get the same SE’s again.
Yes, will think of you tomorrow, I’m in at 11.00, for Herceptin and Tax, so it will take some hours, have a chemo buddy with me tomorrow, a friend, she is quite chatty and entertaining.
Good to read you feel better now re the shrinkage, this forum is good for picking us up again, isn’t it?!!
Hi christine,
I hope your chemo went welL this week l. As for pain - the advice I got when I had taxatere was to start the painkillers before the pain started to hit, and keep topped up. I had paracetamol and ibuprofen, and added some codeine. The codeine made me very constipated, and in lots af pain from that (really awful). The hospital then prescribed movicol, which was very effective in sorting out the constipation. So for the next three taxatere treatments I managed the pain with paracetamol, ibuprofen, and the occasional codeine, combined with the movicol. I did keep a log of when I had pains, and when I took which painkillers, as I guess I was out with the fairies with all theses drugs and wanted to make sure I did not overdose on the wrong thing. The log was very helpful in keeping myself on top of the pain management. My pains with taxatere started in the afternoon or evening of the third day after chemo, which my chemo nurse specialist said was quite ‘normal timing’. I hope you manage to get some better pain relief working for you this time, and avoid constipation.
Movicol is only available on prescription.
Christine
Have started to take paracetamol and ibuprofen today and so far so good, only day 3 though and bad pain hit on day 4 last time, so shall see. Feel just very tired now, head to bed very soon. I’m a bit itchy and get some canestan, could be a thrush … oh what next, eh?!
Re the laxatives, I use Senna and Lactulose, to no effect yet. Dreading tomorrow.
Hi Christine , I had an11 cm tumour that after 3 fec and 3 tax only shrank to 8 cm.however they did get clear margins, though with a mastectomy . I learned that hormone positive cancers sometimes do not respond to chemo well , but do to tamoxifen.
I am well after treatment has finished last month , chemo, surgery , rads and one tam. I did not have immediate recon , but will do later this year
I had a whopper of a tumour encompassing most of the breast onc thought it had shrunk because my boob was floppier. Turned out it hadn’t really but my excellent surgeon managed to remove all of it even though it was very close to the chest wall.
X Sarah
I had a very large tumour (8.5cm) and like you it had only shrunk a little when examined after my 3x FEC and 1x Tax. I felt extremely cross and fed up. However, after my second lot of Tax I could feel the difference in the size of the lump. Anyway, to cut a long story short by the time it came to surgery, I had to have a wire put in lump to make it easier for the surgeon to locate as it was now very small and soft. I also had the good news that there was no longer cancer in a lymph node that had been positive. More good news followed three weeks later when I was told I had had a complete pathological response and no cancer was found in the lump they removed.
So, keep going because everything can change so quickly. I will keep my fingers crossed that the last 2 Tax will do their job and you have good news soon.
Thanks for your posts. My 42mm tumour only shrank 6 mm after 3 x docetaxal. This was very disappointing. Thanks for your posts reading them has given me a bit of hope. I still have 3 x FEC to go. Hopefully it works better than the tax for me
