First taxol on Monday last. Felt fine Tuesday ( dexamethasone no doubt ) Totally wiped out on Wednesday - kept falling asleep. Thursday had lovely day out at coast and felt pretty good but paying the price today. I’ve never been sure while on chemo whether one should take it easy or push oneself a bit. Bit of both maybe.
Got the new wig ready.
Keep feeling my lump hoping for it to be smaller - a bit unscientific! Good luck all you other taxol ladies - it does help to read others’ experiences.
Sarcath
Hi Sarcath, glad you got your first taxol under your belt and wasn’t to bad for you by the sounds of it. I think it’s very tempting to push to hard when on this chemo when you feel good on a particular day, cos it usually catched up with you. I get mine on a thursday along with herceptin, feel ok for next three days then on monday always feel a bit crapy, tired and lightheaded. I guess we all react different.
Did you have your second one this week then?
Dugsy, havn’t seen you post for a while, how are you getting on?
Pumpkin x
Hi pumpkin
2nd taxol tomorrow asssuming blood is behaving itself - I do hope so - I’d like to get few treatments over before ending up with transfusions so we can see if it’s having any effect. I keep feeling the lump hoping it seems smaller - all a bit unscientific! Good luck for your Thursday treatment
Sarcath
hi all. i had taxotere 2 weeks ago now and was so poorly. i saw my onc today who described my symptoms as severe. he gave me 2 options - to grin and bear it as i have 2 more to go or to go on to Paclitaxol weekly for 6 weeks. I was a bit overwhelmed by the decision as i was desperate to get chemo over with but on the other hand have spent the last fortnight in bed and in hospital.
i agreed to taxol but am feeling so nervous about it. I have read your posts and you all seem to think it is manageable? every week seems daunting, and i dont want to be permanently unwell for the next 6 weeks. He seemed very confident that the side effects would be much less than taxol. Any advice very gratefully received x
Hello all,
Hope everyone is ok & coping with treatment & SEs.
Sarcath - presume you had 2nd Taxol & blood was ok? How are you coping with doing things weekly? Are your SEs following a pattern or hard to tell at the moment?
Pumpkin - I’ve lost count, are you on number 7 or 8 this week? Have you got your date for your scan yet? How is your hair doing? I had mine cut really short about 4 weeks ago & lots came out after that, but it seems to have slowed down now & even looks like it has grown a bit!
Welcome jenben - sorry to hear about your experience on Taxotere. I had 4 cycles of it 3 years ago & didn’t like it much. Lots of yukky side effects. Paclitaxel doesn’t have the same SEs & as it’s given weekly the SEs are more manageable. My main problems are tiredness & a horrible taste in mouth. I have treatment on Tuesdays & tiredness worst on day I have it & Thursday & Friday. By Saturday generally feeling better & taste improving too. It is hard work having it every week, but if I rest plenty on days I feel most tired I can manage my day to day life pretty well & I have two children to keep me busy! Good luck with everything anyway & keep us posted on how you are.
I have just been for Taxol number 6 today. Bloods still ok & think I’ve managed to find my work/rest ratio!! Week off next week now, so going to enjoy a couple of ‘nice’ days with my Mum & start my Christmas shopping!
Love to all,
Dugsy x
Hi Dugsy,pumpkin and all. Had 2nd taxol on Monday. Blood was very good but had a mild reaction to the tax this time - they said it often happens with the second one. Anyway they checked me and slowed down the infusion rate and I was OK. Looks like the same SEs as last week - fine Monday and really good Tuesday but totally horrible today - dizzy, headache and v tired. Let’s hope tomorrow is better like last week.
I am just hoping they will continue with the tax - don’t think there is anything else for me. I could be wrong.
Jenben - yes taxotere has horrid SEs. I ended up in hospital too on transfusions and neutrophil injections. Most of my finger and toe nails fell off and PN has never really gone away.
Good luck all on taxol!
Sarcath
Hi all,
Yeh Dugsy i’m on number seven tomorrow, had few days this week feeling bit dizzy and lightheaded and feet a bit tingly. my hair hasn’t fallen out at all, it’s still growing from when i had the docetaxol all be it very fine and fluffy. Havn’t got date for scan yet, should be in a couple of weeks and see onc end of oct. Hoping for a good result and maybe not having to have anymore, they were aiming for eight cos i had had four tax previous to that, but onc did say if it was working well she would like me to try to stay on it a bit longer. Glad you managing not to bad and got the rest/work balance, are you having scan shortly? how many treatments are you having?
Hi sarcath, I had a reaction at second treatment too so now i get extra steroid and very slow infusion at every treatment. Did you get some antisickness tablets from them? i ask for ondansetron, it helps a wee bit with the dizziness, it’s a horrible feeling isn’t it? hope your worst days are over and you feel a bit better for rest of the week.
Hi Jenben, as you can see we all manage not too bad with paclitaxol weekly, everyone is different and has different days when good. I have usually just the one day when i feel crappy, for me it’s a monday, i get my treatment on a thurs. I had tax previous to this and find this more manageable, i hope you are the same. when are you due your first treatment? please let us know how you get on.
Pumpkin x
Hi Pumpkin
Feeling better than earlier on but not brill. They give me Domperidone for sickness but I don’t use it. I think my sick feeling is more from my stomach op still so I use metacloperamide which I was given for that! All these pills and potions it’s no wonder our bodies object. Might try the ondansetron - had that one with previous chemo. Good luck for tomorrow
Sarcath
Hello ladies,
How are you all today? It’s interesting to hear us all commenting on the dizzy, headachey, spaced out feeling isn’t it? I find it starts a few hours after the chemo & can last for two days afterwards. I take Solpadeine Max for the headachey feeling, but sometimes have to resort to co-codamol to finally knock it on the head!! I wonder if mine is more triggered by the steroids, but who knows!!
Sarcath - hope your SEs are improving now & you are starting to feel better for the weekend. When is your next treatment?
Pumpkin - hope number 7 went ok for you & you are not feeling too tired/spaced out.
Jenben - any news on when you might be starting Taxol? Hope you are coping ok at the moment.
I’m having a total of 18 Taxols, so still a lot to go for me as only just had number 6 
Scan is planned after number 9, so early November. I just hope it shows things are stable again.
Went to chat with GP yesterday with my OH, as we feel we need some professional help, other than oncs & nurses at hospital, who can offer us some support & practical help when things get too much for us both. He was really helpful & has put in a referral to MacMillan, so hopefully will hear from them shortly.
Other than that, I’m plodding along this week - was completely shattered yesterday as day after chemo & woke at 4.15am & couldn’t get back to sleep, gggrrrrr!!! Feel better today after a whopping 10 hours sleep last night!!!
Love to all,
Dugsy x
Better than yesterday but still soooooo tired. I guess that is the way it’s going to be!
I’m wondering how this 18 weeks taxol works out - from what you say Dugsy you are getting 18 treatments plus the fourth week off so the whole course is a fair bit longer - 24 weeks unless there are problems. Is that right? My treatment plan just says 18 weekly taxol. Must ask and clarify this next time I go which is Monday.
Desperate to get out of the house but there’s a gale blowing here and heavy showers - might do more harm than good.
Sarcath
Hi Sarcath,
I sympathise with the tiredness - it really makes me soooo frustrated some days when I really can’t be bothered! But it does pass & today I feel much better than yesterday & have done quite a bit of ‘pottering’ round the house.
Yes you’re right about the amount of time my treatment will take. I have chemo every week for 3 weeks then the 4th week off, so I started mid August & won’t finish until early Feb, presuming bloods hold out each time! However, Pumpkin is having treatment every week, with no week off, which could be the case with you too? It really depends on your onc what course they decide to take I think.
Windy here too - not good for us wig wearers!!!
Take care,
Dugsy x
Taxol 3 yesterday and it seems my course is 18 in a row with no break unless there is a problem. I suspect here it depends which onc you see. One good point is that it’s over sooner this way - if I can cope!
Sarcath
Hi Sarcath,
How are you feeling after number 3? Tired I expect! Hope you manage to get some rest over the next few days. Weekly chemo is HARD, but at least I get a week off after every 3 I do, you & Pumpkin have to keep going each week so it must be even HARDER for both of you! But you are right, at least it’s over sooner!!!
I’m been feeling ok this week & enjoying having my Mum here for a few days. Lots of shopping done & a lovely meal out 
Pumpkin - hope you are ok. Was it number 8 for you this week? How are the SE’s?
Sending you both a hug,
Dugsy x
Finally found you - thanks Dugsy! Hello all, just to say I have had number 13 on Friday and feeling OK-ish. I was diagnosed with bone mets in January then a further scan revealed a few “lesions” on my liver, but after the “mid-way through treatment” scan these are showing as disappeared leaving one smaller one which is shrinking. After number 13 I can only describe the way I feel as - its as though I had a really great night out last night and I am suffering the after effects today. (only I didn’t have a great night out last night!!)I suffer a bit with oral thrush but it’s not too bad. Have yet another scan tomorrow then see the Onc on 1 November for results and by that time I think I’ll be done with the taxol and she’ll have to come with something else thats going to keep the lid on things and it can’t be capecitabine as I had a scary reaction to that!! Anyway, off to see The Lion King 3D this afternoon with two 7 year old girls. Sounds like a great excuse for a snooze to me xxx
Hi. Hope you don’t mind me adding to this thread. I’ve read it at least 4 times over the last 3 days. I’ve had bone mets for over a year but they haven’t caused me a problem and have been quite stable on Capecitabine. After a 3 month treatment break my mets have spread significantly and I’m experiencing a lot of pain. I’ve had to have a blood transfusion last week so my disease is likely to be affecting my bone marrow and I’ve been told I need to start weekly paclitaxol and re-start herceptin. I’m going to have a picc line fitted this week and I think I need a bone marrow biopsy too, but I should be starting pretty soon after this. It’s great to read your posts and makes the thought of another new treatment much less daunting. Annie x
Hello all,
Joanne/Wannee - hello & glad you found us! How are you feeling today after number 13? A little better I hope. Hope you scan goes well today & I will keep everything crossed for your results. Just think you could be finished on weekly taxol soon & onto something a little easier. How was The Lion King??? Did you manage to stay awake?!! We are taking the kids to see it on stage in London at the end of November, which should be good.
Annie - hello & welcome. Sorry you have had to join us but pleased you have found our posts helpful so far. We are here to try & help & support each other along this difficult journey. Have you got a date yet to start your Taxol? I always find that once I start a course of treatment I begin to cope better. The unknown & uncertaincy is the hard bit to deal with. Hope having the Picc line put in isn’t too bad - at least that will make the actual infusions easier & quicker. I have a portacath & it’s made such a difference to me - no more needles & hunting for non-existent veins!!! Are you taking anything for the pain? If not, do try & get that sorted - being in pain is scary & when we are pain free we are better able to cope & focus on things.
I’ve enjoyed my week off, but have felt a bit bunged up these past few days. Hope it’s something & nothing as due to have number 7 tomorrow & don’t really want to delay it. Also got our first meeting with MacMillan this afternoon as decided it was time we had some more support for when we feel we are not coping so well.
Hello Pumpkin & Sarcath - hope you are both ok?
Love & hugs,
Dugsy xx
Can’t believe this - just wrote a comment and it seems to have disappeared. I’ll say it all again!!
Annie - most seem to cope quite well with SEs.
Wannee
Such good news that you have nearly finished and have had good results.
Dugsy, thanks for asking - have felt a bit worse this week - lots of headaches which don’t respond to tablets. Not looking forward to number 4 this afternoon. I dread being told I’m not coping and having treatment stopped since I gather taxol is about the best.
Good luck to all you taxol ladies.
Sarcath
Hi Sarcath,
Just a quick word about headaches - I suffer from them quite a bit after chemo & have been advised to use Solpadeine. Might be worth a try, if you haven’t already?
How did number 4 go today? Hope you feel a bit better this week
Saw my Macmillan nurse for the first time today & found her really helpful. If nothing else it was great to talk to someone who understands & could give useful advice. Feeling more positive this evening & ready for number 7 tomorrow!
Dugsy xx
Thanks for that Dugsy - I haven’t tried those. Hospital suggested cocodamol. No 4 went ok except they had forgotten about the slower infusion and the extra steroid - you do have to look out for yourself!
From past experience I’ll be Ok tomorrow and then go down hill overnight. Must get the solpadeine to try tomorrow.
It’s great that you have met your Macmillan nurse and like her. Take all the help you can get, is my motto. I’m going for some spiritual healing with some well known healer in the near future arranged by a healer who helped me with my first lot of chemo (not for breast cancer)
many years ago.
Hope No 7 goes well - your bloods must be holding up well I assume.
Good Luck
Sarcath
Sorry forgot to say, get the soluble ones, not the tablets. They seem to work quite well for me. Hope they help you too.
Take care,
Dugsy x