Thanks for your advice Amanda and Sally,
Think I'll call the chemo suite tomorrow and see what they suggest. Not sleeping because of the pain is just making everything so much worse. Will have to sort some different pain relief for the next tax.
Am going to have some codeine before I go to bed tonight and hope that helps.
Fingers crossed for some sleep tonight.
Hi Gill - I had terrible bone pain too - called the on call night doctor out - he gave me some strong ibibrufen (?) and that didnt touch it. So for tax 2 got morphine off the onc - was still in pain but bearable.
With my first TAC (which includes TAX) I had awful pains in my legs and with the steroids too I didn't sleep for 3 days and nights. On my next chemo my onc said to take ibuprofen before you expect the pain to start and take it regular. I know some people don't like to take ibuprofen though if they have stomach probs. I also asked for some sleeping tablets ( I had lorazapem which I think helps with pains and relaxing muscles anyway) just to take on the three nights I couldn't sleep and it helped, the pain wasn't half as bad and I got some sleep so at least I could function during the day. Don't know if it was simply a case of not getting as much aching second time round or taking the meds above helped. I had my 3rd TAC nearly 3 weeks ago and I have had very little pain in my legs this time, have my 4th TAC this Thurday so we will see how I get on.
After my first TAC I was also thinking do I have to go through this awful aching and lack of sleep every cycle for 3 days but it has got better with every cycle and I would go through it again, even with the awful pain, as I want to do all I can to stop the cancer coming back.
You can do this Gill, I would speak to your Onc or BCN about what else you can take.
Good Luck Gill. Amanda xx
I had my first TAX last Monday and on Wed eve the side effects began to kick in. I have never, ever felt so ill in my life, the phrase 'death would be a welcome release' has sprung to mind quite frequently. My main problem is trying to sleep, I know everyone says it knocks you for 6 but the bone pain is gnawing away at me through the night and I'm really struggling. My hips and lower back are going into spasm and I really can't cope with the pain. Am on 8 paracetamol a day and must admit that last night after crying for a couple of hours I rummaged around and found some codeine which were left over pain relief from my operation.
Really can't keep going with this as it is 😞
Hopefully now I know what to expect I will find the SE's with this and the last one more manageable, I did with the FEC after the first one once I knew what to expect! I admire all of you who have managed to carry on working thoughout treatment, I haven't worked since diagnosis in February I think it would be one thing too much as being a single parent with hardly any family I have enough to worry about without work! I am struggling to even do any housework and the ironing pile is almost to the ceiling lol! Luckily I have 2 teenage boys who have been brilliant!!
Nearly there girls!
I had my last Tax on thursday and to be honest this time it isn't so bad. Maybe its because its the last one I you know the SE will be over soon
Same side effects in respect of taste and bone pain but seems to be a bit less(Maybe I am getting used to it). The tierdness is the main thing for me and maybe thats cumulative given all I have been through and I find myself sleeping during the day. I worked full time through fEC, with TAx I have worked too but at home for some of the time asI have no energy to drive! Good luck to you all and hope it goes xxxxx
I am due my final tax on Thursday. I found the first cycle really horrid but the second cycle seemed quite a bit easier, as bad on the acute se period but seemed not to drag on as long or as bad. Totally agree re taste buds, I had a chip buttie and the bread was drenched with vinegar before I even got a vague taste of it. The same with lemon on pancakes. How many treats can you try that still don't work! Good luck everyone with their se, nearly done now.....
Like others, I found the Taxotere harder than FEC. The taste was THE worst thing for me. Everything tasted like gritty sand. I ate Rice krispies (they taste like sand anyway so it seemed the same lol), also plain baked potato and vanilla ice-cream. At the one time u feel justified in a few nice treats to eat, and they taste vile!! Hosp will give you heartburn medicine, and paracetamol will help a bit with the bone ache. Just take it easy and know that although you have pains, it is that which is killing any stray cancer cells dead. Be kind to yourself and help your body fight the poison and heal your good cells. Lots of love.
Well I survived the side effects of the first Tax just in time for number 2! At least I know what to expect this time so hoping although the side effects are bad I am expecting them and have stocked up on painkillers etc. Had 2nd Tax on Thursday so the muscle pains are just starting to kick in!
The worst thing for me at the moment is that I can't seem to taste anything!!!!! My mouth feels wooly and I don't seem to have any tastebuds! Hope it comes back! Anyone got any tips as to what they did or managed to taste?
Hope you are all doing well.
yes I also have the sore feet, have worn nothing but flip flops for weeks! Good job it is summer! Mine does tend to ease a little end of week two, but not enough to wear shoes. I have also developed burns on the backs and sides of my hands which are extremely painful - only good thing is I now can't wash up as the hot water inflames it - other half not too happy about that!!!
Hi all thank you for the replies! Well it is day 11 today and am starting to feel better apart from the sore mouth! One new side effect I was wondering about is has anyone had problems with their feet? I started to feel a bit of pins and needles a few days ago but this seems to be getting worse not better! The heels and soles of my feet are burning and red, I can't walk too far or stand for long periods of time! Is this another normal side effect that others have experienced but more importantly will it go away after treatment! Don't relish the thought of wearing flip flops all winter cos i can't bear shoes on me feet lol!
Hope you are all doing as well as can be expected!
Hugs Tigs xxx
Hi Tigs - just wanted to let you know that I am on week 2 of my third and final tax, and my SE's were just like yours, but before 2nd dose at appointment with onc, we went through every SE and she gave me something for everything - with the exception of bad taste in mouth, nothing for that! Speak to your team, they are there to help you. Hang on in there - you'll be amazed at how quick time will start going. I start FEC very soon - and just hoping that will be some much easier! xx
Thanks for taking time to reply it's good to know that what I am feeling is quite normal and to be expected! I am starting to feel a bit better today, still achey but aiming to get dressed today! I admire all you ladies that have managed to work throughout your chemo, I'm a district nurse and can't see me being able to go back to work until all treatment is finished, it'll be just one thing too much for me I think!
The washing, ironing and housework is piling up but what the hell eh?
Luv and hugs to u all,
I started my first taxotere yesterday. I am just hoping that there is something that says that it is possible to go on. I am trying to be positive.
I am hoping to go to work again, I work with cancer patients as a counsellor and it helps me to stay with the place I am at.
Yes I agree with jacqui there are some real downsides to TAX but its saving our lives (hopefullly) and like Jacqui despite everything I am still working full time and have been doing so ever since I started Chemo.
I find working takes my mind off things and the time goes quicker. I am lucky though as I am able to have a sleep if I feel a bit tierd so am managing ok. We are all different and it does affect some more than others in different ways.
Ladies, I am so sorry that your experiences of Tax have been so horrid. I just wanted to post this for anyone who hasn't started Tax yet and may be worried after reading of everyone's bad experiences. I know that we read it on here so often, but we are all different. And although I found Tax more difficult than FEC, I was not poorly and able to work throughout my three treatments. The worst thing for me was losing my sense of taste for 10 days each cycle. So good luck to anyone about to start treatment, I wish you all sail through with a minimum of symptoms. And to all you other ladies, hang in there, I hope things improve.
Best wishes, Jacqui
hi tigs, i have had first tax and second one is on thursday. Yes, i agree with you, it is horrid. I had the chest pains andbreathlessness and evn feel chesty a bit now, on day 20! I even went to my gp and asked her to check me over for chest, throat, ear infections, etcc etc etc as i just wasnt bouncing back like i had on fec. By day 11 i was finally feeling a small improvement, and by day 14 i had my energy levels back up. With fec, it was day 8 feeling a bit better and days10/11 back to normalish. I also thought i was having a heart attack, my tummy and bowels moved between constipation and diarroheah. Fingers tingly, flu type aches and pains and a feeling of despondency and nothingness. I even did a thread about it for some encouragement as, like you, it felt endless. However, i have had a good week this week, just ready for them to kick me down again!
That said, i am glad i am having it and iof they said i needed another 20sessions i would agree! I am more scared cos i had an allergic reaction when they gave it to me so that is scary as f***.
Hope this helps, to use an age old cancer comment, there is light at the end of the tunnel....
Your post brought a lot of memories back for me, Tax was awful, hideously so. I well remember the pains, which felt like I was being stabbed in my internal organs. I also had a v high temperature and pains everywhere, and indigestion so bad that I had to slepp sitting up. I had omeprazole for it and for 48 hrs was on 6 times the usual dose (on medical advice). One of the worst things was itching in my (then bald) vulva and anus - it was terrible!
BUT it does pass, and it is regarded as the gold standard of treatment. As my side effects were so many and so severe, my onc reduced the does for the 2nd one by 10% and it was not so bad the 2nd time. I had the same reduced dose for the 3rd one and I'll be honest, it was the worst for me, I think because of the cumulative effect as much as anything else.
It was hard to get through but I know I've given myself the best chance possible.
Hi yes I agree TAx knocks you for six! For me its complete tierdness and lethodgy and no energy at all. Sleep is what I do... my eyes just close and I am away. I am on my second TAx and its a similar pattern to the first. Day 4 is when it kicks in, so I am expecting to feel like this until arond day 10. Don't fight it - go with the flow and relax. I too suffer from stomache and bone ache but am managing that ok at the moment. You will find day 11 onwards you start getting more energy and I was 'nearly' back to normal by day 15/16. Hoping for the same this cycle and let my body recover for my last one! It is strong stuff (my onc said its not smarties he's giving away)so you do need to take care of yourself and go with it - there is light at the end of the tunnel and it will be soon be over with. hugs xx
For me the first taxotere was the worst in terms of pain but the best in that the recovery period was fairly short[10 days].My other 3 tax I had more trouble with fatigue and breathlessness and by 3 I hadnt really recovered by the time it was time for no4.I started rads 3 weeks after 4 and it wasnt until about 7 weeks after that[4 weeks post rads] that I really had something approaching 'normal' energy levels.I have no regrets though.We are lucky to have taxotere.
As TIna said - just hang on in there. In the scale of things theperiod you 'suffer' from the TAX is very short - it can be hell, but it is survivable. I had septicemia while I had my TAX so was very ill already and only managed 2, but I regret not having the third (9 months later) even tho I was told the risk to my health at carrying on at that time was greater than the likely benefit.
I was told by another lady going thru TAX as I started to 'plan nothing and expect anything' - this worked for me (no that I could do much anyway!)
Very best of luck and keep posting - it has a calming effect to a) get it off your chest and b) hear other people's experience and encouragement
Bone/muscle aches, the runs, heavy chest with breathing and feeling like there is not an ounce of energy left, legs made of lead! That's was tax for me, last one 10 days ago and I am starting to feel better. It improved usually week 3. Took painkillers for the bone aches. The rest I just accepted it as part of the course. Going by previous accounts here on the forums, it will take time to rehabilitate, but I am confident about regaining my stamina in the long term. Hang in there Tigs, the weeks will pass, soon it will be over and done with! Bug Hug! Tinax
i im on taxate gud news is your disconfort will go i am sure everybodys different but you describe how i was ask your gp r specialist for heartburn tabs he give me ranitidine they was gud i also took strong pain killers for the pain in my neck and back i was in bed for 2 weeks never thought i was going to get up but i did i have my third taxatere next week have to have four wasnt as bad for the second one had a booster injection to bring white cells back up in a week i had day after chemo do loose heart just yet they say no pain no gain think possitive you CAN DO IT watch some tv or read a book let your family do what is needed you will be ok when i was on ac before taxatere had four of them to do a count down on how many you have left bet its less than what you have done there is light at the end im sure of that keep your chin up and keep going take care elainer
So sorry to read of the tough time you are having.
I am strating Tax treatment tomorrow, so I cant say if it will get any better,what I do know for sure is that all of these side efects will stop when you finish with Chemotherapy - I take great comfort in this at times, I hope that is can provide some comfort to you. And you are already half way through treatment, this too is wonderful - please do let us know how you get on.
Bigs hugs and best wishes
I had my 1st of 3 doses of Taxotere last Thursday and am not sure if I can cope with anymore! I had 3 doses of FEC which apart from feeling sicky for a week I coped with quite well and after the week was feeling my normal self...... I could cope having 1 week out of 3 feeling off colour if I could go back to normal after! However since having the 1st dose of Taxotere I feel like I have been hit by a bus, I ache all over, I've had diarrhoea I can't seem to be able to do anything and feel so useless and a burden to everyone! I can't seem to be able to do anything even the lightest of housework and have spent most of the days in bed! Although I have not felt sick with the Taxotere I seem to be troubled with bad indigestion type pains in my chest and between my shoulder blades at times it feels like I'm having a heart attack, it is this discomfort that is preventing me from eating!
My question is and I know we are all different and cope differently but will these pains continue til the next dose? Will the next and subsequent dose be worse?? Will I ever feel normal again? Any hints and tips on how to cope gratefully received!
Hugs to everyone else out there going through or been through this dreadful time!