I had 3 FEC with usual side effects, ie like being hit by a train then gradually wore off. The last one was put back a week as I had a minor chest infection, but other than that no problems.
However, TAX for me has been an entirely different story with really horrid side effects, although not worse than I have read on here. I saw the onc today and he said if this had happened on the 2nd tax I wouldn’t be having any more, but that there is benefit in having the 2nd which he would advise, but probably not have the 3rd. This scares me witless that I will not be doing all I can, but I suppose I will have to be guided by them as to whether the side effects outweigh the benefits of having the 3rd. I feel a wimp for complaining about the side effects when others have them too, although they did say it is extremely rare to react as badly as I have. I was quite shocked when he gave me the option to stop now.
Don’t know what to do. My lump was 3.1cm, grade 3, er+ pr+, HER-, and it had spread to 5 out of 7 lymph nodes. I’m 39 with husband who wants me to do everything I can to beat it, and girls aged 4 and 2.
Has anyone else with lymph node involvement just had 5 chemos?
I can only give you my experience - I know others have been different.
I had right mast, 3 cm lump, grade 3, er & pr neg, but her2+++ with spread to 5/11 nodes. I was scheduled to have 4 x fec, 20 rads and then 4 x tax. I (relatively) sailed through the fec, then had the rads - then had my first tax… The side effects were horrendous, was admitted to hospital with neutropenic sepsis (having a white cell count of nil!), the skin peeled off both my feet, I couldn’t walk etc etc. My onc took the decision that the side effects I was suffering were doing more damage than the drug was going good - and said that I couldn’t have any more. At this point I was devastated - as I felt, like you - that I was missing out on something.
I have to say though that my onc recommended that I revert to fec, rather than having nothing. I was only allowed a further 2 (onc said six fec was the max I could have in total) - but that meant that I at least got 7 chemos instead of 5. Just wondered if this was an option worth discussing with your onc?
Westside Sue was having a similar discussion on another thread that might be of interest of you - I think it’s called ‘discontinuing tax…’
Thanks Horace and Margaret. I think I’ll see what happens with the 2nd TAX before making a final decision. I have read WestsideSue’s thread as well, but hadn’t heard of anyone having less than 6 in total. I’d have FEC again no problem, but the chemo nurse seemed to think that this was not an option once you’ve started tax, so it is good to hear of someone who went back to it. She also said that she bet I’m not looking forward to next Tuesday (chemo day) which I have to say was not exactly encouraging!
Hi Kinden,
I had 4EC and then 4 tax, EC is the same as FEC but without the F , not sure why I had only EC but first Taxotere was awful I felt like I had been hit by a bus or gone 10 rounds with Muhamed Ali, my bones ,joints, muscles ached I could hardly walk and I felt like shit… anyway the rest were not as bad at all, and Im glad that I had all, try and hang on if you can see how this one goes. If not discuss possibilities of more FEC but Tax is like domestos and it kills, it is the gold standard in chemo.
Thanks Terry and Dawn. Onc said that my bad reaction is really rare, but here are all you others who have suffered like me. I have all above plus temp of 38 (which I had penicillin and antibiotics for), cracked tongue and terrible mouth + bad gastric side effects. I’ll see how no2 goes next week.
Sorry you going through so much, can you not ask for the antibitoitcs, I get them to start on day 5 after Tax and touch wood so far had no nfections or temps, maybe its better trying to prevent beforehand - I know not all ONC’s do this mind
xx
pn could be permanent[hope not]otherwise was given 85% of 10 year survival even though I am triple neg which is so scary.I’d rather have pn than cancer I suppose.I hope the taxotere caused the one while killing the other!
Similar story here! I had 4xFEC first though - and fairly sailed through that. Decided, because it was the summer hols, and I took the FEC so well, to continue with the chemo and have rads later (less disruption to school age kids). The side effects of TAX are horrific. I had, under duress, my 4th TAX on Thursday. I’m still on a steroid high, but had to start taking morphine this morning for the terrible pains. I feel as though somebody has got my ankles in a vice and is twisting my lower legs. My OH can actually feel the muscles in my legs trembling with the pain.
I get Neulasta injections to prevent another stay in hospital on antibiotics (it’s cheaper!) and this can cause its own side effects. I didn’t really suffer much with it during FEC, but with the TAX I also suffer great pain in my thighs which I believe to be related to the Neulasta.
If I were you, I would try to have 3 TAX - but believe me, I do understand how awful it is for you, and am not trying to minimise the horrific side effects. Perhaps you can ask your Onc for the Neulasta jab, and also your GP for morphine (mine dished it out absolutely no problem!).
All the best to you - the decision is ultimately yours - but it’s always good to get advice from here!
Do keep us informed via this thread
Westie xxx
I will certainly ask for morphine, as co-codamol, even the stronger one, didn’t touch the pains.
Westie - so sorry that your torture is so bad; hope it doesn’t last long this time for you. Have you found that it has got worse each dose?
Whether to have no3 will be a tough decision.
I’m so grateful for your input, it really means so much more from others who have also suffered.
I had 3 FEC which I fairly sailed through, but my first TAX gave me terrible pains in my back, legs and feet, which I could barely stand.Normal painkillers didn’t touch it, could’nt sleep, just lay on the bed a snivelling wreck. I could hardly walk to the bathroom. Also diarrhoea and unable to eat or drink much for three days, which made me dehydrated. I had to go into hospital to have fluids and antibiotics, after having raised temp and sore throat.
When I spoke to my oncologist, when I was in hospital, about the severity of the side effects, she decided to reduce my next two doses by 25%. What a difference that made! It was MUCH more bearable,( still had a day of feeling terrible,flu-like,but ordinary painkillers worked fine ), but still had the effect of knocking my immune system almost down to nil, so guess it still did it’s job on the cancer cells. So, there’s another option for you to ask about. My ca was 3cm,invasive lobular, stage 2, 4 out of 13 nodes involved.
Hope you have a better time with next two, if you have them.
Will let you know if it gets worse each dose in a few days. I do know I’ve gone from having morphine from Monday nights originally to Saturday nights now, but whether that’s because it’s around and I’m not prepared to suffer like a I did at first…! The good news is my hair is growing back in under tax!
I’ll let you know when I’m not on steroids anymore (dose lengthened after tax no2) as that does affect me quite oddly - in pain yet racing around the house doing the laundry, ironing etc - bizarre!
Well, for better or worse I’ve had the 2nd dose today and feel ok so far - that’s how it was last time, didn’t feel really bad until the Friday. Had 10% reduced dose, so hope that helps.
Hope you’re all doing ok today, and thanks for your posts.
Hi Kinden - fingers crossed for you. I had 3 Tax and used to have it on a Wednesday and by Saturday evening I was in awful pain until about the Wednesday. Constipation then diarrhoea at day 6 which carried on until next dose. Awful mouth as if like cracked sandpaper. Ulcers, sore throat. That’s what I can remember at the mo. I had Neulasta as well and think that made the pains worse. I used to lose half a stone that week but it went back on after. Everything tasted so foul. It was bad enough on FEC but terrible on Tax.
I hope you are able to get your full dose but I am sure you will benefit with whatever dose you do receive.
Thanks girls. Day 3 and still ok, just really tired, but that could have a bit to do with my 2 year old keeping me up half the night!
Pains kicked in on the Friday last time, so baited breath. I may yet go for No 3.