Hi all
I was wondering if anyone had suffered an allergic reaction or very severe reaction to taxotere? If yes, what happened after the first time you had it?
Elinda x
Hi Elinda,
Not an allergic reaction but I did have very bad nerve pain after my first session. I was in bed for 4 days in agony. Surprisingly the next 2 went without any problems. My doc prescribed gabapentin as a painkiller but after that first time I didn’t need them.
Jan
Yes, I did. The first dose - after 5 minutes I went into anaphylactic shock. I couldn’t breathe and my bp and heart rate plummeted. They quickly pumped me full of antihistamines and after a rest they carried on - but very very slowly. I was told that people normally suffer an allergic reaction on the 2nd dose if they are going to experience one at all.
I was very pleased I had someone with me as the nurse had pulled the curtain round me and just walked away when I was first attached to the drip.
The reason I was put on to Tax was because I’d had such an appalling time with FEC. But nothing prepared me for the misery of Taxotere. Around about day 4 or 5 I found that I couldn’t swallow at all. I was in appalling pain in my arms and legs. I finally emerged out of the house 12 days later. My onc decided that I should stop all chemo as, given my prognosis, it was possible that it was doing more harm than good.
A lot of people have no problems at all with Tax. Unfortunately I wasn’t one of them.
I’ve had that terrible pain as well but mine was in my back.
Msmolly - did you get any skin reaction? The reason I ask is that I developed small hard itchy blisters on my fingers on the palm side. Also whole of my perineum turned dark purple, became a bit swollen and was incredibly itchy. I did go on to develop neutropenic sepsis so ended being bedridden for 13 days in total.
I was really surprised that they continued with it after giving you antihistamines!
Can I also ask about your prognosis? I’m really worried that my consultant won’t be able to give me more chemo and I had a large tumour and lymph node involvement.
Elinda
I am sorry to hear you are having these problems - it is such a powerful drug with some collosal side effects. I hated the absolute destruction of my taste buds which lasted for weeks.
I did get very sore hands and feet - and numbness too. Because I only had the one dose I didn’t lose my nails but they were all deeply ridged on toes and fingers and have only just grown out. Incidentally I wasn’t even on a full dose - they gave me 75% to see how I would get on.
For the 2nd dose (which I never had) they prescribed a ton - and I mean a ton! - of antihistamines and even more steroids.
The onc only tried me on Tax because my nausea was so bad on FEC.
I had a stage 1 grade 3 tumour, node neg but with lymphovascular invasion, strongly ER+, HER2neg. I was borderline for chemo from the start and it was felt that the toxicity was too much to continue with.
I think it is very interesting what Jan says about not having so many problems with the 2nd dose. As you have had neutropenic sepsis are they giving you GCSF jabs as a matter of course?
Thanks for your reply, it’s very helpful and interesting. We seem to have had some similar reactions.
I will be having GCSF injections. I actually had them for all 4 FEC treatments (incidentally I was terribly sick with that too, vomiting violenty, not eating etc). For this first Tax, my consultant was on holiday so the registrar didn’t prescribe GCSF this time. I rang up and queried it 3 times and was told I didn’t need it!! They won’t make that mistake again I’ve been reassured.
I’ll be very interested to see what the Onc says. If I can’t see my consultant then I’m going to refuse chemo on Monday becuase I need to be reassured that the chemo isn’t going to kill me. I rang the helpline here and they said it could be possibly something called Steven Johnson syndrome which is a severe inflammatory response and can cause organ failure.
Mine is ER+ too - don’t know how strongly but I’m guessing very as I went from being unable to feel anything to being given HRT and it coming up as a 6cm thickening within a week.
The onc wrote something on my notes about me possibly having some kind of condition which resulted in the chronic nausea with FEC and the allergic reaction to Taxotere. Can’t remember what it was called though.
I am so sorry you are having all this to deal with - it is essential that you see a consultant before the next chemo so that you can be assured that the GCSF is guaranteed and that other meds like antihistamines can be considered.
Best of luck with it all. I really hope that your next dose is uneventful. Make sure they put it in nice and slowly - often problems are caused by setting the drip too fast.
I had a horrid reaction to Taxotere last year, so the onc reduced the does by 10%. It was still awful, but not as bad as the first. I had the reduced dose for the 3rd Taxotere and it was the worst of all, probably cumulative and following 3 FEC. 10mths later I’m glad I ‘did’ the full course of treatment. Try to think that it’s not forever, just a short time out of a hopefully long life afterwards.
Hugs
Kinden
x
thanks so much MsMolly and Kinden for all your support and telling me about your experiences - I really do appreciate it.
My husband’s Aunt in Canada is an oncology nurse and she’s contacted a colleague who says that my skin problems (hands and perineum)are most likely something called palmar plantar erythrodyesthesia or hand foot syndrome which can affect almost any part of the body. I wonder why none of the doctors over here didn’t know that?! It’s the lack of information I find so disconcerting especially when the registrar says ‘I’ve never seen that before’ and can’t explain it.
I will persevere as long as I see my Consultant first and I can be reassured that I have an allergic reaction they can deal with it. Your so right Kinden about thinking it’s not forever.
Thanks again, Elinda x
Hi Elinda
I have had exactly what you describe on my perineum on both doses of Taxotere so far. My hands were not affected on the first dose. This dose they messed up and the chemo leaked out of my vein and I have a hand that looks as if I tipped the contents of a boiled kettle over it. 3 fingers are totally numb and the other two are numb on one side each, the skin is now peeling like a very bad sunburn and I am told I “might” get the feeling back in my fingers.
Hope you get the answers you want
Fiona
hi just been reading your notes i 2 wasnt to good on fec and had first tac 11 days ago had horrid time terrible mouth really bad back ache and then my legs and back had like funnt nerve pain my hubbie had to take me to loo i cld hardly walk still have bad mouth no tastewasnt as bad as this on fec also i no not a nice thing to ask but i got to ask someone ive had a really itchy bum and cant get rid of it gp gave me some pile cream but that as not worked also had wbc inj which also dont agree with me v bad stomache cramps with bone ache im on 100 dose and my onc wont c me now to ive fin 2 more to go really not looking forward to next one be nice if we cld share tips any help be great laura xx
I had Fec, Taxotere and Herceptin starting Feb 06.
Was ok’ish on the Fec, sick on the night then stayed in bed for 4 days as very dizzy and groggy then would emerge on day 5 to slowly start eating and walking again.
My first tax I was rather smug as had no sick or dizzy feeling, infact able to get fish and chips on the way home, thought it was a doddle, then around day 6 got a sore throat whish was masked because I was taking pain killers for the aching muscles then day 10 I suddenly collapsed as if a rag doll, husband had taken me to GP andlocal path lab then took the kids out to let me rest, luckily I woke up to crawl to the phone to chase hospital on blood counts to be told they thought I was already in as urgent as Nuet score 0.01 and temp of 40. My onc was horrified at cock up and told me that if I hadn’t woke when I had I would have been in a coma, I was put in the main county hospitl 26 miles away for 5 days and let back home on score of 0.6 and normal temperatue.
My onc saw me before every treatment and I was given the neulesta injection for the last 3 sessions. I never went as low as 0.01 again however just about managed to scrape thru and ended up on antibiotics on every dose, mainly due to infected hair follicles, it was horrible like I had open chicken pox spots all over my head, I also had to stop my walking as feet covered in blisters and couldn’t even open a tin of soup or beans to feed my kids due to my finger nails, I also suffered very bad water retention (and still do around my ankles) and usless tastebuds.
My last 2 onc appt’s I have been told by reg and Onc that I am the expample (or guinea pig) I was given tax and herc 6 months prior to NICE approval, first in the county not on a trial and when women were taking them to court, I was given full dosage on the grounds of exceptional circumstances or in other words crap prognosis, I had a very fast growing lump that ended up growing from 1cm to 8cm tumor in the 10 weeks it took the BC to diagnose me, triple +, 15/20 nodes, I have been told that my file is used as a referance and that tax is now becoming more common but not in the doses that I had.
I know that I am already exceeding my original prognosis, my blunt onc is now eating her words, perhaps it’s luck or down to the aggresive treatment, I may even have secs without realising, I have lost 2 friends on this site with roughly the same prognosis and another lady living local is very poorly but there is always those stories of women beating it with crap prognosis. So here’s wishing…
Good luck with the treatment, I found it harder and harder even with the jabs but now very glad I saw it thru.
Debbie XX
Debsy - it seems that you and I have also had similar reactions to FEC and Tax. I’m wondering if my dose was really high too and that’s something I’m going to ask on Monday. I haven’t asked about prognosis as I’m not sure I want to know and it all just stats anyway. My husband didn’t want me to continue with Tax as he thought I was going to die but I’ve explained to him that it is a necessity. My husband rang Onc’s secretary to make sure we actually see him and not one of his team on Monday and they’ve assured us that will happen.
Laura - I’ve been using pile cream which has helped a little bit. Went to the chemist today and the pharmacist said about trying Lanacane which is specifically for anal itching so I’m going to give that a whirl. sorry to ask but has the whole area gone purple as well? I’m going to speak to my oncologist about it as well on Monday. It’s still keeping me awake at night now and I’m almost 3 weeks since chemo.
thanks for the replies. I’m sorry to hear that others have had such awful experiences but it’s reassuring too.
take care all, Elinda x
elinda45 hi no not purple just v itchy yes like u im 11 days after chemo mine kp me awake to im on 100 tax thanks for help will give it a try tc everyone we can allmhelp each other somehow xx
Hi Elinda, if you are still having the palmar planter reactions you might find a cream called Udderly useful. The PP reaction is also very common amongst us Xeloda (capecitabine) users. I use the udderly hand cream a couple of times a day on my hands and feet. Some info, udderly-smooth.com/?gclid=CMamvNfztJwCFU0A4wod9k1knQ I’ve been on constant Xeloda since Spring 2008 and lots of fellow chemo users recommended the cream. The cream has helped me stay on a high dose chemo whilst I’m having such good results from it.
I’ve also had 2 friends that had very serious reactions to Taxotere.
Good Luck with your appointment next week…hope you get some answers, solutions. x
I had an allergic reaction while I was being given the second Taxotere. I started having difficulty breathing. Luckily there was a nurse very near and she stopped the infusion immediately. They gave me intravenous Piriton and then after a couple of hours restarted the Taxotere but put it in very slowly. I was given the Piriton before my third dose too.
The main side effects I experienced after each Taxotere were a dreadful itchy rash and painful stomach and guts.
Good luck
Anthi x
Thanks for the link Belinda, I’ve never heard of this stuff but looks good.
Laura, I tried the lanacane last night and I found it more effective than the pile cream, so probably worth giving it a go. It’s in a bright yellow packet with red writing on so easy to spot. I was told to go for the cream rather than the gel.
Thanks Anthi, it’s reassuring to know if it is an allergy that they can do something so I can continue with it.
Dreading Monday…
Elinda x
Fiona - forgot to ask if you’ve been told what it is going on with the perineum and what you’ve been using?
Elinda x
thank you for sharing your experience I had my chemo on wednesday and i am experiencing the worst pain in my legs can harldy walk
Reading your experiences give me some strengh
thank you
Elinda
Seeing Onc this week before next dose so if I get any info I will post it - there on Wednesday.
Fiona