Hi Daffodil,
I did the Oncotype test privately as i’m with BUPA private health care. They didn’t pay for it which was a total bugger, but worth it, I guess. I think the NHS is currently doing a trial on it, possibly in Wales? It doesn’t have to be done at the same time as the original histology - my clinic just shipped a sample of the original tumour to the US and got the results in around 2 weeks. I was also really worried that the T was too aggressive but my Onc said it is the gold standard of chemo and if a patient has private medical, she will go that route. Apparently, it is too expensive for the NHS. Its so hard trying to second guess everything and so worrying as well. My onc said she was looking 20+ years out (not the standard 5 yrs) and wanted to throw everything at this so I can be done with it once and for all. Fingers crossed. Now on day 5 post chemo. Not feeling too bad but today is the worst day so far. Very dodgy tummy. Insomnia. Fingers are peeling??? Thinking of going to work tomorrow.
When do you start?
Sorry being thick here but do you mean taxotere when you all say tax or T?
Hi Jo C
Yes T or Tax is short for Taxotere (Docetaxel).
Hope all you March starters are doing OK. I have my first of 3 FEC & 3 Tax tomorrow, and I’m a a bit apprehensive to say the least! I’m really heartened to read how others are coping.
Take care and good luck everyone
Liz x
Thanks Liz, good luck for today. I had my 1st AC last week and doing ok now. I am due to have 4 x Tax at the end of my AC course. Am now more worried about the Tax than the AC!
Take care everyone
Jo
x
Hi Adangel, im due to start epi-cmf on wed. Arent oncs funny(?) mine also told me my regime was the gold standard and that tax was only recommended for people with node involvement which luckily for me was not the case. I guess you could question yourself til you were blue in the face but at some point Ive just got to sit down and start and though would like to take the test cant bear the thought of any more delays. Hope all works out well for you and maybe I’ll just slip in another question or 2 when I speak with the onc next eh?
Rachel
Posted on behalf of new user Alison
Jo, Facilitator
Hi there, started FEC - 4 cycles, and then 12 Taxol - on 9th March. Having read all your posts, don’t now think my symptoms are all that different apart from maybe the major swelling of my entire body from the knees upwards! That coupled with skin so sore it couldn’t bear to be touched and difficulty breathing. Before you panic, was sent home from A and E with a prescription for Calcium tablets, yet a sleeping tab seemed to cure the problem and woke up with normal body size and sensitivity. Think it was probably the steroids, but have to admit to being very well looked after, and lung CT, heart echo and chest x ray all proved no probs with thrombosis. Movicol for constipation, tabs for heartburn and generally feeling much better… second FEC on the 30th… wait and see how that goes. A
Hi Jo and all you March starters.
Well I’m back from FEC 1, it went fine. No side effects so far apart from a headache that is gradually getting worse, but no big deal really.
Good luck to everyone about to start their treatment,
Off to my bed now, its been a long day!
Liz xxx
Hi everyone
just back from having bloods done so fingers crossed for FEC2on wed
hope you all had a lovely weekend
maxine xxx
Hi all, am in my second week since FEC 2 and the side effects were the same again, sick for a short time and then so far I’ve been fine since. I’ve been reading about the Tax and that worries me a bit as people seem to suggest that it’s got worse side effects. I’ve got one more FEC on April 14th before starting Tax in May. My hair did go but I got an Amore wig which a salon in Bristol that had been trained by Trevor Sorbie trimmed for me, and only the people who know I’ve lost my hair actually knew it was a wig. It’s not the most comfortable thing to wear and it’s a complete pain having to take it off every time I want to use the fan oven, but I feel really confident when I’m out because no-one thinks of me or sees me as a cancer patient. My PICC line has made a big difference but line care has been a bit of a nightmare because my local gps/district nurses wouldn’t do it so the hospital is training my husband to do it. It was so good not having blood tests or chemo done by needle.
Hope everyone else’s chemo is going well, I would be interested in anyone’s views on whether Tax is worse/better or just different from FEC. Take care all.
x
Hi CaptainHaddock
I had 3 FEC followed by 3 Tax. I was sick with Fec and felt pretty c***, the more session I had the worse I felt. But Tax was different. Felt pretty good first couple of days after treatment which lulled me into a false sense of security cos by day 3 felt really rough - very achey. However I don’t think I felt any worse than with FEC, just as bad but different. Sorry not sure if that helps or not! It is manageable so hang in there
Saz x
Hi ladies
i agree iam to have 3 fec then 3 tax i was also wondering about tax being worst i go for my 2nd fec tomorrow bloodcount is fine
hope everyone is well
maxine xxx
Thank you Saz and Madmax - I hope the FEC went well madmax. I do feel reasured by your comment Saz, because I was half expecting you to say everyone you knew, including you, had found Tax much worse. Hopefully, like you, I won’t find it particularly worse but different. I switch to Tax on 5th May, so I’ll let people know then. In meantime, if anyone else has any views, like does it make you feel as sick as the FEC? (that’s just me hoping not, because I SO hate feeling/being sick.
Hi Captain Haddock, I switch to Tax on 3rd May. I asked my chemo nurse about it, she said you don’t get the sickness like you do with FEC (hope that’s some good news for you!)and the SE’s are different, with some nuscle aches and pains. I have read some of the threads on here about Tax and one of the things it can do is damage your nails. I think the tip is to paint your nails a dark colour to stop the UV rays getting to them. Some ladies also put their finegrs and toes in cold caps.
Hi again ladies,
It’s been a while since I last posted. Got through the first round really well - just some minor, niggling side effects but felt really good weeks 2 and 3. Bloods were perfect. Had my second round yesterday and starting to feel a bit rough. Nothing specific, just not myself, you know? I used a cold cap for the first session, but on Friday my hair started shedding MASSIVELY so I gave up on the cap (and the bloody brain freeze) for session two. Now trying to figure out whether to just let nature take it course or shave it all off. I did get 2 wigs (one luscious real hair glam wig and one short, sassy, synthetic one). Its nice to go from long to short in one day and not have to commit to either. There’s a silver lining! I haven’t found any nice places to buy scarfs that don’t scream chemo! Has anyone had any luck? I’m also moving on to Tax on May 24th. I also heard about painting nails and toes a dark colour to prevent damage. I’ll definitely give it a go. Good luck and warm wishes to you all!
Hi there, I have finished 4 FEC and just had my first TAX 8th April. The side effects are different, the first 2-3 days you feel fab, this is due to different kind of steroids they give you. Then the aches set in, arms, legs, chest, jaw, neck… but no sickness or nausea. No taste buds unfortunately, but mouth not as dry as with FEC. I have night sweats too but I think that was menopause brought on by the last FEC, no fever just very sweaty! You feel a little like your head is somewhere else. I had a lot of breathlessness with FEC but not TAX. I still can’t walk fast anywhere however, simply due to the aches and pains in joints. If I had a choice between the two, so far I would definitely choose the TAX. You can take paracetamol for the pains or maybe something stronger, I take it with codeine during the daytime. So I hope this puts your mind at rest a bit and you know what to expect somewhat. As Lisa said, I have painted my nails dark purple to keep them from exposure to light, and during my tax session I had them in bowls of ice water. The onc told me that they could change colour, go black, or drop off… or none of the above, all depends. I am having herceptin at the same time but I don’t think you have any SE’s with it, as long as the first dose goes well you are good to go. Good luck and stay positive now.
lizzy x
Hi LIzzy, saw this thread and wanted to join in cos I am now on FEc and have one more of those but then TAX and heard such alot of not so good stuff about it im scared stiff and suffered so far on FEC with low neutrofils been totally wiped out and so weak its unreal, tho FEC1 was fine… xxxx have taken in what u wrote, relieved to read u would rather have the TAX, how many are u having, im to have 3 of each then RADS, been told TAX is cos had 2 nodes involved.
Shar xx