Just caught up with this thread as I’ve been away. Sorry to hear that everyone’s feeling so bad on Taxotere.
Try Rose’s Lime Juice Cordial for the awful taste. A white coated mouth may be oral thrush. My GP prescribed Fungilin pastilles and these got rid of the thrush very quickly.
Jude - I had dreadful gut and stomach pains with Taxotere too.
Taxotere is awful but is supposed to be a very good chemo - good luck everyone.
Take care
Anthi x
Dahlia - I had read that before so I duly rang the hospital about the numbness - they seemed to wonder why I was ringing, as it is a recognised side effect. I have read variously that it can take months or years for numbness in feet to go away (I believe fingers get better quicker).
Justme - I think your OH needs a reality check. Is there someone you could talk to (his friend, or his family) who could point out the obvious to him, without it coming directly from you and sound like nagging? You really need more support here. Or can you just by-pass him and get your own friends or family to help? You have my heartfelt sympathy as this Taxotere is just so awful.
Anthi - thanks for the tip, I’m off to buy the lime juice cordial
RR
Justme - I hope you are feeling a bit better today - your OH definitely needs to take a bit more care of you. One tip is do your shopping on line, I got my Tesco’s order today and it makes a big difference and the nice man even bought it into the house for me - he must have took one look at me and thought oh my god she looks like she needs help!
My OH has been really good, the hardest thing for me is having a 3 year old who wants his mummy to play with him and I just don’t have the energy. He came in from nursery yesterday and wanted me to play tennis with him in the garden - I had to keep sitting down I was exhausted! I spent the weekend having to hide away upstairs as I just couldn’t cope with him at all.
I’ve actually been out of the house today, just up the road to a friend’s house but that was an achievement!
Anthi -was your stomach pain like you were really hungry, a boring down feeling? I keep getting it at night and it keeps me awake is really annoying.
Jude
xxx
Hallo fellow sufferers
This thread is such a comfort. I don’t usually do side effects but this lot is awful. Thankfully today I feel about 75 rather than 90 years old so that must be a move in the right direction. And I got some sleep - mainly because i was just so exhausted I think. The raging headache is now a dull throb. The foul mouth feels as if it will never ever go away, whatever I do. There goes a bit more weight! I put on some trousers this morning that I hadn’t worn since about April and they nearly fell off! They were realy too tight when last wore them. Gives me room to indulge when I actually want to eat again!
Anthi and Jude - I have a panful stomach too - feels like I need t dash urgently all the time but embarrassingly it is usually wind. Is there no end to the humiliation? The stripey nails?
Justme - I would love to have a word with your OH! Have you tried a dramatic crying jag? Always works with mine as I so rarely do it. He even washed up last night… Mnd you, he was the only one who ate anything…
Onwards and upwards
Much love and strength and patience
Dilys
xxxx
Hello fellow Toxeteres,
I am having number 5 of 6 tomorrow and I found each treatment is slightly better than the one before. Really tired but that does pass and I give in to it and rest when I can. I have also lost weight although it seems to have leveled off now. Food tastes horrible for a good 7-10 days after but I still manage to eat. I know that it is important.
When my mouth is sore I eat natural yogurt and fruit and I drink fresh vegetable juice every day to help my immune system. As for ulcers i found that gargling with salt water was best. Not pleasant but cleared the ulcer up. The worst one was one I had on the end of my tongue…really painful and made it problematic eating. After treatment to I had really bad diarrhea , treatment 3 it was not so bad and I have not had any after treatment 4.
My nurse told me that your body does get used to the chemo so it should get easier as it goes on. I cant talk for everyone but mine has got easier as it has gone on as the first one was terrible.
I still get emotional after each treatment and I cry when ever I need to and it does help and it is normal. You laugh when you are happy so why not cry when you are sad.
I do not look forward to my treatment BUT I know that I have no chance without it. I will throw anything I can at this cancer.
Good luck with your chemo and think of me tomorrow at 11.30 for number 5 Taxotere.
Hi Fayjay69
Glad to hear it gets better. I will think of you tomorrow my love. I am feeling much less achey by the minute and will scream if I can’t get to the cinema tomorrow!
Take care and wishing you luck for number 5. You make me count my blessings that I only have two more of this thing.
Dilys
xx
Hi Fayjay69
Your comments do help, is good to hear that it does improve after each treatment. I don’t like the sound of the ulcer on the tongue - ouch! I’ve lost a bit of weight already but am sure I will put it on again soon.
I do suddenly feel better this evening, but I have got a bit of an irritated bladder which is what I had on FEC but I’m already on antibiotics and have just bought some cranberry juice to try and combat it.
Good luck for tomorrow.
Jude
xxx
Hi Everyone
I have got my 3rd FEC next week, and then I am starting Taxotere on 10 Oct, so reading your posts with interest and now getting slightly worried about the side effects.
I saw onc today (not my normal one he is on hols again) and she was amazed at how well I am feeling and doing on FEC as no sickness at all and eating like a pig, and she was telling me that taxotere can be harder and the first one is the worst and I will feel like I have been hit with a double decker bus … is this true. Although she said, as been ok on FEC, I might (only might) not suffer to bad on Tax.
What do you lovely ladies know and think?
Thanks
Love
Dawn
x
Hi Dawn,
the first one was pretty bad but nothing that I couldn’t handle, I went red in the face, and was really restless. I put that down to the steroids that I take over the 3 days, 1 lot before chemo, 1 lot on the day and 1 lot the day after. I had bad ulcers on my tongue and mouth and was pretty emotional BUT I was not sick at all and I did manage to sleep. Best advice I can give is as soon as you feel an ulcer coming rinse with salt water and keep it up until it clears. Especially rinse after meals and at night. Also invest in an Aloe Vera plant and smear the gel on the ulcers and that helps to clear them up up. It is good to keep your mouth as clean as you can if you have ulcers. I also find that eating little and often helps. Lots of veg and fruit and healthy snacks. (Not a nice topic) but as long as I don’t get diariah I drink prune juice to keep me regular. It is so much better than getting constipated. That is no fun at all.
Taxotere does make you pretty tired so it is good to rest when you can. To be honest my treatment has gotten better as it has gone on the the onc is please with how well I am doing. I do also see a herbalist who gives me a tincture to help with the side effects. She is really good and is always positive. Really good person to see when you are down.
Anyway that is all I can think of for now. If you have any other questions feel free to get in touch. I wish you luck for the 10th. I should be due my last Taxotere on 4th Oct. I have had 4 with 2 to go and it has gone by pretty quick.
By the way are you being treated for secondaries? If you are, are you going to london on 24th Oct?
All the best
Fay :o)
Jude and Dilys
My pains were in my stomach and gut and I had quite a lot of diarrhoea. The stomach pains in particular were very bad and I could feel them in my back as well. I’ve got a history of stomach problems anyway and take a Pantroprazole tablet every morning. Some women have been prescribed those or similar to help them get through chemo. I took 2 each day when my stomach pains got very bad. Also my onc suggested taking Immodium for a short time to slow my guts down and that really helped too.
Dawn - I have heard that people who are reasonably OK on FEC have a bad time on Taxotere and vice versa. In my case I wasn’t too bad on FEC. I felt very nauseous but never vomited and used to have a bad first week followed by 2 quite good ones. My first Taxotere was a nightmare but numbers 2 and 3 weren’t so bad. But don’t worry too much about that Dawn as we all seem to respond differently. I’m glad to hear that you’re feeling well on FEC and I do hope that Taxotere isn’t too bad for you.
Take care everyone.
Love Anthi
Finished taxotere on 1st of May and have been reading your posts. 'orrible stuff !!
but… despite having every sympton going plus scaly skin numbness in hands and feet I started to feel ok about 6 weeks later. Now 3 months later I am fine just get tired easily but on herceptin so could be that. You are supporting each other through this as a few ladies did with me Anthi Ena Horace etc. Love to you all this will soon be a memory Love Eileen
Dear Dawn
Hi again! Well I was just great on FEC as you may remember, but got my come uppance this time. Having said that, the dose was last Thursday and today I am definitely perking up. All I really have left is that foul mouth taste - really can’t eat, though my OH tells me the food is as good as ever and he does eat it! Good for the figure though. I am getting a weird craving for Ambrosia creamed rice pudding and will buy some tomorrow! I just hope that I follow Anthi and it is better the next times around. Oh and as you will see I can’t sleep tonight but think that is because my mind has clicked back into gear!
Thanks for the postive post Eileen - how goes the herceptin? I will be following you down that track too!
Lots of love
Dilys
xx
Hi Dilys and Eileen and everyone else too
Am dreading Tax, but onc did say after first one (which is the worst) they get easier, so heres hoping. But never know, maybe I will have some goodluck out of all this s***e that am going through and not have too bad a time on Tax. Who am I kidding …
Dilys and Eileen, am following you too on Herceptin. Been told most likely to go on that after chemo, so let me know how that is too. Getting as much info as poss. Know that Herceptin is every 3 weeks too, so great, another year going every 3 weeks to hospital!!! And isn’t the first one the longest as have to stay at the hospital for 4 hours after or something?
Anyway all you lovely ladies, good luck on your continuing tax treatment. Keep piling up on the info for me, even though scares me s***less, but got no choice, so may as well find out all the pitfalls.
Have a lovely day all.
Love
Dawn
xx
dm1968 & Anthi,
Yes I had heard too that if you were good on FEC then Tax would be bad & vice versa.
Well, everyone said how well I was doing on FEC, so I was forewarned.
I had really bad joint & muscle pains with my first tax - constant fluey type aching, with other pains darting randomly around my body, groin & legs being worst. I also felt really ancient, walking around the house at a snail’s pace and trying to avoid the stairs. The nurses had told me to take ibuprofen or paracetamol, but neither of those had any effect. After a couple of days trial & error I finally found a combination of diclofenac & cocodamol worked (yes you can take them together). Diclofenac is a prescrition only drug, but I had some in the house after a bad back episode last year. I imagine that ibuprofen & cocodamol would have a similar effect (tho’ diclofenac is stronger).
I now take these drugs the moment any twinges start & I have been fine (well, not fine, but aches & pains haven’t been the problem)
Don’t start me on the tiredness & mouth…
Last tax tomorrow, then like you Dawn I start on the herceptin journey. Will the trips to the hospital never end?
Chin up ladies, I just assume that this drug is so awful because it actually works. I’m planning my retirement now (20 years away).
RR
Hi all
Following my fellow Taxoteres with interest. I had my 3rd last Friday and feeling ok - though this time I am more tired.
I put this down not just to taxotere but also the kids are back at school and I have to get up to do the school run and have found that I popped into shops in morning on way home
Find this is a good time as shops are empty and I don’t have to worry about picking up infections from sneezy shoppers.
Tummy is back to normal and overall I feel quite well physically. I am now starting to worry about after the chemo.
I feel in many ways it’s like a security blanket. When I am on it, I figure the cancer is being kept in check. Had a sore back for the last couple of days and convinced myself it was sinister - then remembered that the Neutralgia probably in my ribs making them sore. Worried about how I’ll react after chemo.
I have 5 weeks of radiotherapy and then onto herceptin for 12 months - it is all such a rollercoaster. In many ways I find myelf a lot more anxious now. Feel it is 3 months since diagnosis and worrying so much about the future - what if it comes back. How will I know? I had no symptoms before my diagnosis (except the lump in my breast) How will I know if it’s back?
Sorry for the rant but this whole journey is so scary.
MuddyXX
Hi all
Dawn, just to say that try not to worry about it too much as everyone is different, the comment about being hit by a bus does ring very true though I’m afraid, maybe just a minibus and not a double decker! I would just prepare yourself with lots of different food, fruit juice, boiled sweets etc and know that you will probably feel rubbish (or maybe not) but that it will get better again. At the time it feels like you will never have any energy ever again, climbing the stairs is a challenge but it does improve.
I am on day 10 and I feel much much better today. Although my stomach is giving me serious problems with cramps at night. I’m ok when I go to bed and then I lie awake and then my stomach just starts hurting when it’s been fine all day. I’ve got something called buscopade that the doctor prescribed that should help. Although I don’t seem to have had any other aches which I suppose is good.
Muddy - has your mouth been ok after the first treatment, does it always make your mouth yukky? My mouth kept tasting really salty yesterday which was a bit strange, cups of tea are slowly improving. It’s my son’s 3rd birthday on day 6 of my next treatment and I would love to have a birthday tea with cake but god knows whether I will be able to taste it.
Jude
xx
Hi
Yeah my mouth has been fine (touch wood. Really yukky taste but no ulcers or nasties. To be honest I feel not too bad. I am tired but the horrible tummy is gone - taste buds ok and feel reasonably well. I hope others take note - it is a horrible treatment but if a wimp like me can cope anyone can. Dawn - you will manage!
I really don’t want anyone getting too scared of taxotere - hang in there - so far - first few days awful, truly awful then not too bad.
Hang in there ladies
MuddyXX
Hi All
Thanks for all your comments, although I might not be too bad with joints etc, as got little rheumatoid arthritis and on Sulphasalazine (spelt wrong), and before that had diclofenac too, so maybe it might help combat some of the pains in joints, as allowed to still take, well can at mo. Probably need to check again before start tax.
Anyway, not much I can do if I do suffer bad, need to have it to fight this crap, so roll on 10 October is all I can say. Sure won’t feel like that the nearer it comes …
Good luck to all you ladies and thank you so much for the input … keep it coming though.
Love
Dawn
xxxx
Hi all
Well I am having a really really s**t time of it. My OH got home last night to find me in tears on the bed, just couldn’t take anymore. Then last night I couldn’t sleep with the pain in my stomach and head and took 2 temazepan at 12.30 in desperation to make me sleep which it did eventually so got about 5 hours when woken up at 7 by the hot water coming on (it makes a terrible noise!). Then today was going ok, took my toddler to the post office at the end of the road to post a parcel and then we came back and made biscuits and then they all went wrong and stuck to the baking sheets but tasted ok in the end but that was just it, floods of tears and can’t stop crying since. My OH is off today as well but needed to cut the grass and I just wanted to do some normal things like a normal mummy with my son and that has just made me so upset because I can’t. I know it’s my own fault for doing too much but I just want to do things like I always do.
This is a long rambling one, thanks for listening and I hope you are all coping ok today. This is just one big emotional rollercoaster, I don’t normally cry very much in fact hardly at all, I’m not very good at it and am usually such a very positive person. Yesterday I was alright but then I emailed work and they said that they missed me and wanted the old Judith back again and that just upset me so much as I’m never going to be the same person again and how can I ever go into work and sit in my chair and not just cry!
I’m having a really bad day, not normally like this at all.
Jude
xx
Hallo Jude
Oh I feel for you. We all have these days and if you can’t tell us then who can you tell. Have a huge cyberhug my darling. It does go up and down so much. I just want to be able to eat again without spitting everything out. Weight loss is great but this is getting silly. I am buying baby food tomorrow to see if I can get any down. Joint pains much better, but I so understand everything roadrunner was saying. It just ambushes you. Hopefully by the next lot we will all be thriving on it.
Take care Jude and love to all fellow sufferers.
Dilys
xxx