hi everyone
I thought I was doing ok, I’ve done x4 FEC and had my 1st taxotere last Tuesday and was feeling really positive as now have only 3 more to go. However the taxotere is horrrible, my mouth is just disgusting and nothing tastes right. It has taken a few days to start but now is just there all the time. Does this improve as time goes by or is this it for the next 3 weeks.
Has anyone got any advice on what helps.
thanks
Jude
xxx
Hi Jude
I’ve had my 3rd Taxotere last Friday (3 of 6) and I know where you are coming from. For a while nothing tastes as it should - even water tastes foul.
I can only tell you how I found it - it does get better. I tended to suck fruit lollies and certain brands of cordial worked better than others - it is trial an error.
I found one brand of orange horrible and another just fine.
I also find that I have the most disgusting dirty taste in the back of my throat. The only way I can describe it (and sorry to offend) I feel as though I have eaten raw sewage - that is the taste. At this time I try mint imperials of fox’s Fruit glaciers or brush my teeth with a very soft toothbrush to try and help.
My two boys 11 and 8 tell me my breath is stinking (husband too kind) and no matter how much brushing of my teeth I am aware that it is the truth.
I find as the cycle progresses it does get better. By the time the three weeks are over I generally have my taste almost,but not quite back to normal and then we go again.
I haven’t found a magic cure but when it is at it’s worst grab a pineapple lolly and try that!
Good luck
MuddyXX
thanks Muddy. It is driving me mad, I’m going to get some ice lollies to suck and also some fruit sweets. It is just minging my mouth, like the worse hangover breath ever and nothing seems to make a difference. You are right that water tastes foul but not as bad as a cup of tea! I’m hoping things might improve in a few days as not sure what to do with myself. I think I’m feeling a bit sorry for myself today.
Jude
xx
Hi Ladies
I underwent 9 months of Taxotere treatments and had the same problem plus all my gums were swollen and numb. My only comfort were natural yoghurts and ice lollies. It would last for a week then all was back to normal for the following 3 weeks. I tried to remain positive knowing that Taxotere was known as a miracle drug and although it was pretty tough most of the time during that period,it was to make me better. That was 8 years ago…keep strong and know its not forever
Hi Jude and Muddy
Thank god - thought it was just me! Tea is foul, water is foul - am going to try those lollies! Even cornflakes were foul this morning. It helps to know it is not all in my mind, so thanks for posting. Sore throat too anyone?
Cheers
Dilys
Hiya everyone
On Tax No. 3 and mouth is cruddy from about day 4 to 9. So far have found the best help is bicarb in water mouthwash, really helps when brushing teeth is tooo much. Lots of fresh pineapple, difflam mouthwash for when its really sore. Had my last session Friday 31 Aug. and my mouth is now OK - managed chilli plus wine last night and they tasted absolutely brilliant. It doesn’t last forever.
Hang in here
Cheers
Anne x
Dear Anne
Thanks - what a relief! I seem to be drinking mouthwash at the moment. So glad to hear there is an end in sight eventually. I will dig out the bicarb now!
Love
Dilys
do you just mix bicarb of soda into some water?? that sounds horrible but I’m willing to try anything. My mouthwash is supposed to taste of peppermint but tastes foul!
Jude
xx
Hi Jude
Yep. Just mix about teaspoonful with 1/2 glass warmish water. Its not so bad as it sounds - my dentist suggested salt water, but that just made me feel sick. Difflam mouthwash, available from chemist, is good for taking the pain away when the ulcers are at their worst. Good luck.
Cheers
Anne
I had my first tax 30th August and my mouth has been awful too…I did get it with the FEC but its worse with Taxotere.
I also seem to have a lack of saliva as my mouth is sooo dry all the time, and as others have said, everything I drink tastes horrid. Water is awful,(a slice of fresh lemon makes it taste a bit better) and tea, redbush tea, even cranberry juice is disgusting! The same with food. Today mouth is not so coated in white stuff, but still I have no taste.
For relief I chew Extra gum (and this is someone who can’t stand gum chewing normally), it does seem to promote the flow of saliva. I also get packs of mini Solero lollies. Orange I find the most refreshing.
And yes, whoever asked previously, I have had the most awful sore throat and painful glands with the taxotere as well as pain and aches everywhere else! I also have shingles now!
How I HATE all of this.
Thanks Justme
It was me with the sore throat too! So good not to be alone although I wouldn’t wish this on anyone! Leave alone you my love. Will anything ever taste good again?
AARGH!
Dilys
Hiya all
How are you all doing today with the taxotere?
My mouth has improved slowly over the weekend which is a relief but I am just absolutely exhausted. I’ve never known anything like it in my life, I know exactly what someone else said about feeling like an old lady. Just getting up the stairs is an effort, I managed to hang some washing on the line this morning which nearly finished me off completely. I just can’t believe that I’ve got to go through this another 3 times. On one positive note though my nurse just said to me that if you feel like this at least it must be working which I guess makes me feel a bit better. Is anyone else having problems with their tummy, pains etc??
Jude
xxx
Hi there ladies. Been looking through this website for some while, but this is my first post. I’ve had 4 FEC and I have my 4th (and last - hooray) Tax this Friday. First tax was awful for the joint & muscle pains, but I’ve used diclofenac & cocodamol since then which has worked for me.
No 3 was the worst so far - completely wiped out and diarrhea too. Awful mouth lasted well over a week - I will try the bicarb solution next week as nothing else has worked. Mouthwash hospital gave me (sorry, can’t remember the name) tasted worse than anything else.
Does anyone have problems with their feet? Two of my toes have numb patches on them, the actual patches are quite small but my toes just feel too big for my shoes now. Also my toe nails are turning brown, and they are tender too. This is worrying me as I am a runner (just go slower these days and only run two weeks out of three) - I have already had to give up swimming for the duration, don’t want to lose running too.
This taxotere is just so awful - it must really be doing us all a lot of good!
RR
Hi RoadRunner
You must be so glad to have your last one on Friday, that is fantastic. The thought of another 3 for me is a horrible thought but I know it must be working as it is just so horrible.
No problems with my feet so far, fingers crossed, I’m sure someone else must have had this as a side effect though.
Jude
xxx
Hi there everybody
RoadRunner
Join the club with the feet - I’m at the same stage as you, just one week behind, and also have the numb feet plus fingers and top lip (unbelievable!) but onc says its all quite normal - great. My nails are tender, but just gone a shade paler. What I can’t get over is the fact that you run two weeks out of three (you go girl) - I’m knackered if I walk briskly - tried a bike ride recently and nearly had heart attack!! Like you have had to give up the swimming - wonder when we can start again?
Hang in there - not long to go now.
Cheers
Anne x
Hi all
Over a week since TAC 3 and feeling quite well now. I read with awe at the idea of running. I think I’m super if I manage a walk around the shops and supermarket - no jogging just yet.
My tummy is back to normal almost and now just have thetiredness. Left the kids to school and went back to bed for a couple of hours - feel it recharges the batteries.
Nails still ok but still 3 to go so who knows. Finding my reconstructed breast very tender and a bit sore - but told this is normal.
Hang in there and lets hope this stuff is doing its magic.
MuddyXX
Hi all,
This Taxotere has hit me so badly I doubt if a single cancer cell could have survived it…I am barely surviving it myself! And like Jude I have had only had one (following 4 FEC which I coped OK with). I honestly don’t think I will be able to take any more.
Today is day 12. I am spending most of my time in bed, sleeping. I am so exhausted. I suspect I am also anaemic as I am so pale. I am being treated for shingles. I am hardly eating. Everything tastes horrible. The ends of my fingers are painful, getting hot water on them is agonising, and I can’t seem to use them for things like popping pill packets.
There is barely anything edible in the fridge as OH hasn’t done the shopping…or dusting…or toilet cleaning…or washing. I told him I thought I ought to go to the hospital for blood tests but he has gone to play in a charity golf match. Doesn’t charity begin at home?
And he hasn’t had a single day off work to care for me despite the fact that he has 6 weeks holiday still to take this year. It’s not that he is a horrible person, just that he seems incapable of taking over things for me while I am so ill. I feel so resentful!
And as for running…blimey, I couldn’t even WALK to the end of the garden and back again at the moment. I haven’t even been dressed or been out of the house for 8 days.
Hi all
I finished my 8th Tax on Aug 1st and I am finally feeling normal-ish. My nails are lifting off the nailbed and I had to take antibiotics because the began to smell (eww!). They look gross but they’re not tender anymore and the smell has gone !
I also suffered really bad aches and pains (similar to flu ache) which lasted 2 weeks and I felt ancient. I still ache but not nearly as bad.
Today, I felt great! Walked the dogs in the sunshine! I have much more energy and I’m slowly deflating (turned into a right blimp!)
Having Taxotere is a horrible experience but if it kills the little buggers this time round, then thats fine with me!
Sam B
Hello fellow Taxers
I don’t want to put a damper on things but the numb feet/fingers should be reported to your oncologist and it is called Peripheral Neuropathy, google it for more detail but is typically associated with diabetics and alcoholics!!! I have it in my feet a year after finishing chemo so don’t expect it to regress as soon as treatment is done, it could take weeks or months. I met a lady in the summer who still has numb feet 4 years on and I nearly fell off my perch when she told me that. However, it is not painful and does not affect my day-to-day activities anymore, I cycled 23 miles yesterday to/from a blood test no problem. I found it was at its worst about 5 or 6 weeks after the last (4th) Tax so I could only wear flat shoes all the time and had to be careful about my balance i.e. not scrambling over rocks on holiday and always hold on to rails when on stairs etc. Compared to all the other possible side effects it’s nothing really.
Oh Justme, I’m so sorry you are having an awful time. It sounds like you really need looking after and a lot TLC - I hope your OH comes to see this and provides! I’m sure you have been in touch with your hospital to see if there is anything else they can give you…but if not, is that worth a try?
Glad things are looking up Sam B!
As others have said - the only consolation is that if it is this awful, it must be doing good…
Best
Jo