Weekly Paclitaxel side effects

[riversidedawn]

Lankylass, just wrote a long reply and it's gone!!!! I've completed 11 weekly Pax afte3r 3 x FEC, cold capping all the way - what a slog! Hands and nails have held up - I've been moisturising daily. Absolutely shattered, probably worst side effect. Hair, eyebrows and lashes still intact (somehow!). Keep going, it's definately doable and that's with a husband having a knee replacement 5 weeks ago whilst I was still undergoing chemo (total nightmare) - running around after kids and husband, reconstruction in 3 weeks and then 3 weeks of rads....... hopefully hubby will step up, but not convinced.

[Anniegran]

Hi Lankylass, glad you are doing better on Taxol. I get hungry the day after treatment too. The nurse says it is because of the high dose of steroids. Yes, my pre meds take a long time. I don't have the leg twitching but I do doze off, even with the ice cap on! Husband comes with me and he dozes off as well! One day we were in the ward with just one other couple and all 4 of us were asleep! I am getting fed up with dark nail polish. Does help your ails though. Mine are ridged and a bit brown after 10treatments.

[lankylass]

Number 2 yesterday went ok but was I fed up after the hour long premeds iv! Now I know what the term 'half asleep' means, upper body asleep but legs very much alive and kicking. As the paclitaxel was being iv'd over an hour, I was dozing off with the antihistamines and my legs were thrashing around, I couldn't keep still with restless leg syndrome. And so cold, I was given a blanket. Has anyone else had this probem? Couldn't work out whether it was the steroids and antihistamines fighting each other again, or the paclitaxel.

Am eating like a horse - had four hours sleep last night, up at 4am, had two breakfasts, elevenses, lunch and biscuits every hour, now about to have tea. Am expecting to be in bed asleep all Bank Hol weekend, catching up.

It is very strange having this every week, every Tue picc linecare and bloods, then Wednesday comes round so quickly. Anyway next Wed it will be no 3 and then the rest (9) will be single figures - countdown......and SO much better so far, than the goddam awful FEC!

Hope all you ladies are doing ok and are planning as far as poss to have an enjoyable Bank Hol weekend.

[lankylass]

Well the first two days were ok had plenty of energy but the weekend has found me weary and feeling very cold and miserable despite the sun. Perhaps watching the Marathon on TV has reminded me that we all deserve medals for doing our own marathons. Countdown time, 2nd taxol on Wed and then only 10 to go and feels a lot gentler by comparison with the fecking FEC. Hope the s/es don't build up too much though....And a lovely present in the post - a blue badge for the car!!

[Herewego]

Hope you managed to get some sleep tonight Lankylass.
Thank you so much for the rundown of your first day! Makes me more at ease about my weekly Taxol starting in 2 weeks 🙂
Please let us know how you get on xx

[lankylass]

Had the first weekly taxol of 12 today. Some folk seem to have three then a week off, rinse and repeat. However just glad the time will pass quickly if it is every week without a break. The premeds took longer - 20mg dex steroids, phew- was only 8mg for FEC but none to bring home. Had emend capsule and metclopr antisickness and some to take home, piriton antihistamine and an oral omeprazole for tum instead of ranitidine iv as I'm allergic to that. Herceptin jab in thigh first as was monitored for 2hrs while they were doing the other stuff, to check for reaction - will be every month and although it takes 2 mins to put in, and nurse warned me it might hurt etc, it was really a piece of cake comparatively speaking. 6 months of those as I'm on the Persephone trial.

Came home after 5 hrs, had a lovely massage after treatment, crashed out for 2hrs. The steroids and antihistamines are fighting each other so I alternately swing from the chandeliers and eat like a horse, then crash and can't move. Don't suppose I'll find out what the taxol side effects are till all that lot wears off!! Was told to paint nails and slather on the factor 50 sunscreen, if we have a summer that is.

[Anniegran]

Hello Lankylass, hope you are doing OK on new regime. I have had 9 treatments so far. My tumour has nearly disappeared!! Am to see breast surgeon at the end of the month. Likely to have lumpectomy instead of mastectomy.
Paclitaxol has gone well. Bit achey and finger nails gone bit brown and of course very tired. Having treatment every week means that directly the chemo fog starts to lift and you feel good you have another treatment! Still I have a week off for good behaviour this week before I start the next and last cycle of three.

[lankylass]

Nice to hear positives about weekly paclitaxel over three weeks instead of three weekly docetaxel, as I've just done 2 FEC and number 3 has been abandoned due to bad s/e, heart probs. Onc says this regime is 'kinder' - well I suppose it's all relative really! And herceptin jab too if the echo comes back ok and I am able to have it at same time as pac.

[Anniegran]

Debtex, sorry to hear of the problems. One of the girls on Starting Chemo in Feb 2015 thread recommends using those handwarmer gel pads that you put in the microwave to plump your veins up. Sounds like a good idea to me. I had to stick my arm in a bucket of hot water. Don't put up with bad nursing, Good Luck. Ann

[Anniegran]

Hi riversidedawn, thanks for this. Day 2 after Taxol and I am fine. Mouth a bit dry, slightly raised temperature (nothing to worry about) and feelin a bit exhausted but nothing like some of the other poor girls are feeling following other treatments. They gave me anti histamine,,steroid injection and anti nausea injection prior to treatment, I think this is normal. I took paracetemol before cap, first 5 minutes were the worst, next 15 just about bearable and the rest of the time just slightly uncomfortable. Had to go to the loo twice. All that liquid I drank to fatten up my little veins worked so they got the cannula in but of course it had an other effect! My hair is lovely and shiney. The nurse sprayed some conditioner on it before capping. I have bought some baby shampoo to wash it later in the week. Go in on Monday for first dose of Herceptin and to have Port a Cath fitted.

[Debtex]

Hi all . Getting to the end of paclitaxel now , one more to go . I'm very tired . No energy . Sore fingertips and toes . Struggle to stay warm . Dry mouth . Other then that ok . I think the dose of docetaxel did mess me up prior to the pax .hope everyone ok x

[Nan66]

I had MX April 2014 lobular tumour 5 cm then had 6 X 3 weekly FEC and really sick etc etc just finished weekly paclitaxol. Which was very much easier. Thought I would have to report late side effect of dreadful burning itchy legs but OH had bought different washing powder.. Just what I need a massive re wash day. Hope it does the trick. 9 of 15 rad with bolus done with no itchy skin there!! Hastily cross fingers this continues. Hope ladies your treatment continues to be event free.

[riversidedawn]

Debtex, nan66, Sandie, how are you all doing?

[riversidedawn]

Hi Ann, I've just had number 3. So far so good. I had surgery in September and have also had 3 rounds of FEC which were 3 weeks apart. (Well in reality 4-5 weeks as I had various infections). So far it's a breeze. I'm cold capping too. My only side effects so far on taxol are bad taste in the mouth, tiredness and hot flushes/night sweats on top of my pre existing insomnia! After the first one I also woke up on the first morning with a bright red face and rash on torso, this lasted 24 hours and nurse reckons it was reaction to oral steroids on top of IiV ones. No rash on number 2.

FEC made me nauseous, loss of appetite, extremely tired, constipated, nose bleeds, hot flushes started, dizzy, hair loss (minimal).... So, so far this is a breeze. It'll be interesting to hear your SEs if you're only having taxol.i always take pain killers half hour before cold capping, and am using tins of hand & nail cream on hands and feet to try to pyrotechnics nails.

Hope you ge to sleep soon. Xx

[Anniegran]

Hello everyone. Pleased to have found thi thread and thanks everyone for helpful advice. I had first dose of Paclitxel today plus pre meds drugs mentioned. All OK so far. Sat up in bed with hot milk and a biscuit having slept on settee in front of TV all evening.
Wore cold cap. First 5 mins the worst. After 20 mins it was OK.
I am having my treatment pre surgery. Hopefully it will reduce my tumour which is 5cm. I am also having Herceptin injection on Monday in the morning followed by insertion of Port A Cath.in the afternoon.
Ann

[riversidedawn]

Debtex that sounds horrible. We deserve the best when going through this. It's a shame you rid t get picc line sooner, I can understand you tony want it near the end but you need to finish your course. I was lucky I had a portcath fitted at the beginning which has made it easier:

[Debtex]

I am going to carry on if my veins ok but not prepared to have a picc so near the end of my treatment . I feel annoyed now as the nurse seemed quite inexperienced and by the time the Sister intervened my veins were too mucked about . I'm going to stop being so nice and compliant and demand I get the best person to do it ! I've had 10 drips in one vein and have a different nurse each time who seem unaware of this . Duh !

[Nan66]

I'm sorry debt ex you are going through this problem. I hope you have managed to resolve it. I had a port so unfortunately can't advise on anything else. Re treatment decisions I have found these tough right through treatment and have seemed to land in the grey area with nothing definitely advised but 'up to me' so difficult. I do applaud everyone who gives money to or does reasearch that will make these decisions easier.

[Nan66]

I had 6 FEC before an op and then 9 paclitaxol after.

[riversidedawn]

Can't you get a picc line or port Debtex? Good going to get this far without. I've had 3 FEC and got 12 taxol! 2 down!

[Debtex]

Hi ladies I'm a weekly paclitaxel girl . Had 3 fec , 1 disastrous docx and so far 6 paclitaxel . My onc ideally wants me to have 3 more , although I could have stopped at 6 . Today should have been my 7 th but my veins shut down and they could not get a cannula in . I was very upset in the chair . I really think I've had enough but I'm scared to stop . Any comments etc ? X

[riversidedawn]

Hi nan66, yes got started around 10 this morning, got about half an hour of cold capping left! It does seem much kinder so far. The 3 weekly doc sounds horrendous! I've ordered udder cream for the hands and feet but hasn't come yet. Redness has eased over the week so wonder if it'll return tomorrow. I haven't had any steroid tablets to tak e this time so will be interesting to see if there's any difference.

[Nan66]

Is it your second dose today? Hope all goes well. Just an update..red soles of feet from paclitaxel are improving and slight tingling in fingers nearly gone. Nails still OK . Bit of skin rash after last dose used aveeno cream and almost gone. Still got bleeding nose in morning but think that's getting less too. Sleeping not good but think I need to reprogram after steroids.. Otherwise feeling tired but OK . From what I read of other posts weekly seems much better. Worth the hassle of turning up every week. Hope you have the same experience.

[Nan66]

I had red rash from steroids. Re hands/ nails I was told to use suntan cream that did seem ridiculous in this weather but have no problems so maybe it worked.

[riversidedawn]

Hi nar66 I started the taxol yesterday and had the same per meds as you. Woken up with a bright red face, is that normal?? Hope it's still going ok.

[keepmumsane]

Hi riversdawn, my oncologist has me down for this after 4×AC. She said its much easier cos the weekly dose is smaller...some times your hair even grows back! 

Mine will be alongside herceptin.  

Xx

Sandie

[riversidedawn]

Love the wig in the wind image!!

[Nan66]

No cold cap as thought it might aggravate neck injury. Lost hair with FEC . then after a gap of couple of months started weekly paclitaxol and hair that had started growing back seemed to stop growing but not shed very much at all. Have IV steroids 6.6 mg IV granisetron IV piriton and IV ranitidine and the saline of course before the paclitaxal. Also take omeprazole sorry forgot to put that down. Have an intermittent dry cough but think that is irritation from acid tum and blocked nose.. I have full blood tests each week just before treatment. I really don't feel too bad at all. Get out for a walk most days though weather does not encourage that at the moment.. Wind and wigs a bit dodgy though it does in fact feel secure enough but put my hood up..wig looks as if I have been to the hairdressers every day. It's a good job it is irritating after a while or I could become addicted. Hope your side effects are minimal too.

[riversidedawn]

Thank you Karen2609 and Nan66. There's so much to read about Taxotere side effects but nothing for Taxol so it's useful to learn your experiences. I appreciate we're all different! Nan66 did you cold cap?

I cold capped with FEC and have done really well so far - went a bit thin after the first dose, nothing lost after no 2 and so far nothing on no 3, although I'm day 13 so any day now!

I've got omeprazole and movicol so will keep going. I've been told I will only be given steroids to take the day before, on the day and day after and that's it, for the first dose anyway.

Thanks for your comments ladies. I hope all continues well for you.

[Karen2609]

Forgot to mention, was on omeprazole from early FEC for acid stomach and remained on that during paclitaxel. Hair loss does slow down after first couple of Fec but carried on losing small amount until couple of weeks after chemo finished.

[Karen2609]

Not so far, although I don't know how long after you can still have problems but they are fine at the moment!!

[Nan66]

Everyone seems to have different responses but here are mine. Blood in nose and stuffed up. Have cream for this. Constipated take movicol. Slight hair loss. NO nausea..such a problem on FEC. White blood count consistently low but did not need injections..have kept away from everywhere..bug time of year.. Slight problems with sore feet. No nail problems. Hands sensitive to cold and very dry. Use aveeno cream. Tired. Insomnia. Slight acid tum. Pre meds steroids piriton and stuff for acid tum and sickness. Haven't taken or needed any take home meds. Apart from nose cream. SE much much less than on FEC. A couple more weekly treatments to go.

[riversidedawn]

Thanks Karen. Sounds like it's better than the 3 weekly docletaxel. Any nail problems?

[Karen2609]

Hi Riverside Dawn
Sorry I don't come on here so often now and have only just seen your thread. I had 6 weekly paclitaxel and can confirm my SE's were minimal compared to FEC and Docetaxol. I was given Emend before each dose but didn't need any further anti sickness drugs although o was always offered them.
I don't think you have a time on the weekly when you are at higher risk of infection, didn't have to have the GCSF injections as my neutrophils didn't drop too much. Only had to have full pre chemo bloods every 3 weeks usually they just took a sample just before chemo given.
I don't know about hair, I cold capped and was told to continue using it although hair did start to come back during this time. 9 weeks post chemo I have just coloured my hair, lashes and brows disappeared just after Paclitaxel but are back now.
The main side effects I had were very achy feet and legs and the horrible taste and dry cardboardy mouth. These are improving now.
The good thing about the weekly is that the sessions come round so quickly that it feels like you are getting through treatment. I hated cold cap on FEC but on paclitaxel I soon got used to it and didn't seem too bad.
Hope all goes well for you, it will be over before you know it
Karen x

[riversidedawn]

Thanks Janet. Everyone seems to be on 3 weekly cycles so will give a call later.

[Janet_BCC]

Hi riversidedawn

I'm sorry you haven't had any replies to your post yet.  This might be something our Helpline could help with.  The opening times are 9-5 on weekdays and 10-2 on Saturdays.  The number is 0808 800 6000

Very best wishes

Janet

BCC Moderator

[riversidedawn]

I've had 3 FEC cycles and am due to start Paclitaxel next week x 12 weekly cycles. All information seems to talk about side effects based on 3 weekly cycles not weekly and I wondered if anyone out there can share their experiences please?

I'm confused that if infection risk period is day 7-14 and hair loss around day 14 I'll be onto second or third round by then so it sounds like it's a rolling constant thing?

My oncologist said SEs will be minimal, I won't need anti sickness drugs and my hair shouldn't fall out - but that's not what the info leaflet says!