I rally want some advice please!
I am on fec-t and whilst the fec was not nice I could enjoy some good times.
I am having a crap time on tax and need to know what is normal and what is not so I can go armed with info to my onc!
First dose before xmas I ended up feeling as if I had drunk bleach…raw mouth raw throat raw stomach…now on duble dose of omeprazole but still swigging the gaviscon like a goodun
raw intestines…and I know this is poss tmi…but whilst I have never had either constipation nor the squits all through this my bum is raw too…feel like baby with nappy rash 8-0
Every other mucous membrane about my body also raw and sore…again tmi but you can imagine!
corners of mouth permanently open and sore and eyes dry and sore.
ended up in hospital with neutropenic sepsis…
Tax 2 they lowered the dose by 20%
So…day 7 and same symptoms as above except not got neutropenic sepsis…yet!
Added to above is nail cuticles sore, fingers weird…numb and tingly, feet clumsy and keep feeling giddy and odd.
Now I am not a slacker nor a hypochondriac but spend a lot of the time in tears at the moment as cannot function like a human being.
I never see the same person twice in the oncology dept, they have never told me how much added value this suffering adds to my prognosis…nor what permanent damage may result.
Am not getting ANY good days particularly…
So ladies on or who have had tax…Am I experiencing normal side effects and must just suffer or is this not normal and i need to moan or at least talk to someone before I end up in A & E again?
Docetaxel was the chemo i had such a reaction to and was unable to take. Obviously they couldn’t give it to me so am just on FEC, which is fine so far (1st). They did say that Docetaxel is the one that people react to - about 1 in 10.
Have you phone your unit? Could they just use FEC?
I’m sorry you are having such a rough time on Tax - my onc told me that it is often the case if you get through FEC relatively unscathed, you will have a hard time on Tax, and vica versa. It was certainly the case for me - FEC was very manageable but Tax was awful. I’m afraid your se’s are probably in the upper range of normal and pretty similar to mine. Some seem to have an easier time on Tax, but what you are going through is not untypical.
It really does just wreck your digestive system from one end to the other. I found the mouth problems really tough to deal with, and didn’t really find any of the mouth washes very helpful - but hopefully someone else has had success with mouth treatments and can give you some advice. The higher dose of steroids don’t help, and I always thought coming off the steroids made me more tearful than usual - maybe this is affecting you too. The tingly feeling is peripheral neuropathy - again a common se that should wear off. But do make a list of all your se’s for when you see your onc - they should be in your notes.
I don’t know if it is typical, but I found the fist Tax the worst, and the exhaustion wasn’t so bad by the time the third one came around. But things like the mouth problems didn’t really improve between cycles. But on the bright side - you’ve got 2 down and only one to go - the end is in sight.
If you are neutropenic there are injections they can give you which will raise the white blood cell count, which may help with infections etc. These are expensive, so you may need to push for them. Usually they start with one or two, but by the time I finished Tax I was on 10 between cycles, and I know I would never have finished the treatment without them.
I would ask for these before giving up or switching to FEC, as Tax is very effective at dealing with cancer so if there is a way of sorting this, however expensive, you want to explore it.
Sarah
You can get a one off injection - Neulasta - but I gather it is expensive, so may need to make a fuss to get it. You do it yourself at home the day after treatment. Worked really well for me.
Hi there,
Just wanted to say I’m really sorry you are having a hard time.I’m searching for answers for why Tax is so hard myself so can’t give any practical help- just wanted to send a hug.
Sue
So sorry you are suffering so much. From all your previous posts I know you are as far from being a hypochondriac as is possible.
I really hope you find some relief. I always think I shouldn’t have read this post as it’s first TAX for me tomorrow - too late now though!
I know what you mean about not really developing a relationship with the onc. I saw mine for the initial appt where he explained everything.
Saw an underling before FEC2 and at my hosp you don’t see anyone before FEC3. I saw him last week but that was more about whether I needed an abdominal operation (which he had forgotten to find out) so was not able to talk about TAX issues.
Big hugs coming your way and to any other TAX sufferers.
Oh goodness, that sounds blooming awful. Sounds a bit like me on AC and I think that was due to an enormous dose - as I was pregnant they were giving me a dose for someone 15kg heavier than usual. Is it worth asking about lowering the dose again for the next cycle?
Ooops, not sure what’s happening with my computer.
I didn’t find a solution to the awful digestive tract problems but someone else tried something called ‘Muguard’ which apparently helped - got it from onc/chemo nurse. I sympathise enormously as I was in a mess with thrush at both ends - have you tried Nystatin? That helped my mouth at least.
It does pass. But you should definitely mention the tingling as this kind of nerve damage can be permanant. My onc was more worried about this than anything else. I’m on day 9 of Tax 3 and am still tingling and numb and sore, but it’s not as bad as it was after Tax 1 when I had a bigger dose.
It’s so bloody miserable when you’re in the thick of it, and I know it feels as though you’ll never recover. But you will.
Having said that, I’m not having Tax 4 as I can’t cope with feeling mental for another month. I know what you mean about stabbing someone xwelcomex - luckily for others I was ready to stab myself! xxxx
In addition to the wonderful support you already have please remember you are welcome to call our helpline where you can talk things through and share your concerns, the line is open 9-5 weekdays and 9-2 Sat on 0808 800 6000.
Thanks for the replies…I now know I’m not alone! I was told in no uncertain terms by the chief onc at my pre assessment last Tuesday that I would not be even offered the injections as even though I has been in hospital for 3 days with neutropenic sepsis my bloods had eventually recovered without help to a neutrophil level of 8.5…which is high!..I actually had to tell him I had been admitted to his hospital as he was totally unaware!! If you know the person to ask please let me know!
The oncs at our lovely oncology unit are very unfriendly…dunno about stabbing someone…giving a dose of tax to one or two of them would be my choice…and see how they like it!
Yes xwelcomex I am Her2+ so guess I will have to ride out the storm…am already drinking the aloe vera and also yeo valley probiotic yoghurt works well…(and takes away the taste of the gaviscon!)I took ice packs the first time and 2 cool bags full of frozen peas the second time and kept both fingers and toes almost frozen as didn’t even get offer of cold cap for head let alone digits!!..might come over and see you next week for tea n sympathy ;-p
Jane, I’m going to get some muguard too…sounds good…and I have the ultimate respect for you…doing tax with 2 small kids deserves an award!
I made myself get out today and spent a day at mt friends yurt up on Exmoor and also walked her woods and fields and helped her with some advice on her sheep…made me feel a bit more like me!
Just one thing to those discussing freezing their fingers during treatment: my chemo nurse looked into it after offering me cool packs as my fingers were already totally buggered from AC (nails disconnected from bed etc) and she found it was important to keep the fingers warm. Circulation is apparently the important thing with tax. She rang me especially to tell me. Don’t know if it’s worth looking at further? xxx
I’m coming through first Tax too - just thought I’d let you know that I was trying to cope with awful bum and mouth and kept thinking it was just SEs but in the end I went to GP yesterday and he said my low immunity had triggered ringworm/thrush fungal infection so I had ulcers in bum and awful mouth and throat too for same reason. I’ve had one tablet yesterday and one today for fungal infection and things are much better - GP was glad I’d been to see him. So you might have just “normal” SEs but you might have something else… Just thought I’d share this since unravelling SEs and other things is so tricky…
Hope you feel better soon “lost in france” - and can eat and sit comforably before too long. Really sorry to hear you feel so bad about your hospital treatment.
Fran
Glad you managed to salvage something from the day, LiF. You’re a real tooper/trouper? If you’re finding it so hard, there’s not much hope for me. Hope things improve soon.
Useful tip Fran - I’ll tuck it away in my armoury and hope I don’t need it.
I have been there and done that and started off just like you. I was lucky that my Onc was so good.
What helped me was,
1/. Sore mouth. Take ice lollies with you and suck them during your chemo. Wash your mouth out 3 or 4 times a day with pure pineapple juice. Ask for a five day course of Fluconazole to deal with the thrush.
2/. Diarrhoea, take Loperamide.
3/. Constipation, use Dulcoease capsules.
Rest when you need to, cry when you need to and hang on in there, it will soon be over.
I am a diet-bore and have posted about this long ago, and below is one of my posts from several months ago. While the debate goes on about diet curing/causing cancer, one thing is for sure: a super-healthy diet meant that I got through chemo and still managed to full-fill some big contracts I had for my business, it meant that I did not have to have the injections and also I didn’t put on any weight.
Try eliminating all salt in your diet to get rid of the horrible mouth.
I had a really bad time with 3 fEC and then my first tax was in so much pain and spent a week in bed. Met with a nutrtionist and took on a ‘love your liver’ diet.
NO dairy, no salt, low saturated fat, no red meat, LOTS of fresh fruit and veg, 3 litre of glass bottled water a day, whole grains, no yeast, no white flour. - of course no alcohol too! Walking up to an hour a day is important too.
It sounds really restrictive and it is, but my second and third tax were much easier, virtually no pain. The results were absolutely incredible! Friends also, really noticed that I got my personality back.
ALSO, my wbc was down to 0.5 for the first two chemos, then I had two lots of injections. For 5th chemo I refused them and my wbc was 5.2! no injections (which really added to the bone pain). I did take manuka honey each day too.
I had 6 lots of TAX last year along with two other chemo drugs (AC) and I thought the first one was the worst in terms of the severe aching and throat and stomach problems. The next two were a bit better but I found the last 3 very hard in terms of lethargy and emotions. I was absolutely exhausted, was out of breath just walking a few hards and spent the last two chemo’s in bed most of the time. The tingling in my fingers got worse with each chemo and everynight in bed I get pins and needles and they hurt when it is cold. As it is cummulative the taste buds got worse and by chemo 6 they didnt come back for 3 weeks! Eating pineapple and brushing the tongue with a soft tooth brush to get the white stuff off helped a little. During the last two chemo’s the only thing I could taste was custard, it may be a case of trying diff foods on each chemo. The comments about keeping warm on tax is true, I was cold all the time and we had a good summer. I also adopted a really healthy diet like Gretchen and I think this did help although I struggled to stay healthy on chemo 5 and 6. I too had the neulasta injection the day after chemo and my white blood count was always fine, no probs.
However, am now 3 months past my last chemo and I feel soooo much better, nearly back to normal. I have now forgotten about the all the side effects, and if god forbid I had to go through it again I would. I kept telling myself that the chemo was doing its job and I only had to keep on with it for a few months and I can’t believe how quick it has gone.
I am still a little tired but I am back at work just working 5 hours a day, I still have the tingling in my fingers but I am still able to work which can involve a lot of keyboard work and it doesn’t bother me so it does get easier
Diet…I eat an amazingly healthy diet as we produce a lot of our own food, eat very very little processed food and all wholegrain everything, I never add salt to food. I eat meat about 2-3 times a week but never poultry unless its my own home reared. I eat oily local fish once in a while too but not unsustainable fish! Do not drink bottled water due to plastic and nitrates…! I am unusual in that I only eat meat I have reared etc but I also don’t lose sleep over the diet thing…exercise… also walk at least 2 miles a day as have dogs and sheep! have put on a few pounds but only coz I’m not as manicly active as usual…
I think what I am experiencing seems to be quite normal and am so grateful for your replies, support and help…its much appreciated!