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Paclitaxol/Taxol
Hello,
I'm due to start 18 weekly sessions of Taxol on Tuesday & would really like to be in touch with people who are going through the same thing as me, for moral support!! So thought I would start this thread & hopefully get to know some of you better.
I have bone mets which have remained quite stable on Zometa & Femara, then started showing some signs of activity, so tried 6 months of Capecitabine which again stabilised for a while but now active again, so trying weekly Taxol now. Have to say I'm terrified of more chemo & everything it brings with it, so having people to share the experience with (and moan with!!!) will be really helpful.
Dugsy
Hello! There was a mini discussion about this a week or so ago on this thread: http://www.breastcancercare.org.uk/forum/viewtopic.php?f=25&t=33008&p=571075#p571075
x
Hi Sandytoes,
Yes I've seen that & it was helpful. I just feel a bit alone at the moment - it's that feeling of being in no mans land before treatment starts. Hopefully I'll feel better once I start next week.
How are things going with you?
Dugsy x
Hi just wanted to say hello I'm on taxol/ carboplatin for lung mets but am on 3 weekly one the se have not to as bad as fec tax still hard though there are a few ladies on here on taxol in the tn thread have a look in there hope u get on ok big hug xx
Hi Dugsy, I'm starting 12 weekly paclitaxel this afternoon, would be glad to have people to share with. From what i've heard and read most people seem to tolerate it well, I hope we will be the same. There has been a lot of confusion in my treatment plan. I was on docetaxol/herceptin, had four cycles and then scans which they said showed progression and that treatment wasn't working. I was put forward for a trial of a new hercptin type drug. When I met the onc running the trial he questioned that decision, had more scans which he said does not suggest progression so not eligable for trial. He has decided to put me on weekly taxol/herceptin. I have bone mets and spots on my lungs which are so small they can't seem to tell what they are, and just keep saying they are indeterminate.
I'm a bit worried that if i have had progression on docetaxol will another taxane based chemo work better/different. I might make a seperate post to see if anyone knows this.
Anyway sorry for ramble, i'll let you know how I feel after my treatment today.
Pumpkin x
Hi I just noticed y post and wanted to say docetaxol didn't work for me but when was dx with lung mets I was put on taxol and reduced my tumors by 70/50 percent so the 2 are sim but have dif bits in it but he's also combined mine with carboplatin because of the taxane prob thought u might find this usefull tc Laura
Hello Pumpkin & Laura & thanks for the replies. Hope the treatment goes ok today Pumpkin - do let me know how you get on & how you feel afterwards.
I'm just about to go out on my bike with the kids - making the most of the weather & also days left before chemo starts!
Dugsy x
Hi all, well I didn't get my first paclitaxol yesterday because I had a reaction to herceptin, even though i've had it loads of times before, they said it cen happen anytime even if you've had it before. So chemo been postponed to next week, fed up as I had psyched myself up for it.
Dugsy what day are you getting yours? maybe if you feel up to it after you could let me know how you get on?
Have a good weekend all
Pumpkin x
Hi Pumpkin,
So sorry to hear you didn't start your Paclitaxel - completely understand how you must be feeling, as I'm now psyched up & ready to start so a delay would really be a downer! Did you not manage to have the Herceptin either? Hope you don't have the same problems next week.
I start on Tuesday so will drop a post after that to let you know how it goes. Spending my last weekend before chemo eating & drinking while I can still enjoy it!!
Take care,
Dugsy x
Hi Dugsy, Yes I did manage to get all my herceptin, it was about half an hour after it while getting my pre meds for chemo that I took the reaction. Hopefully all will go well this Friday.
Good luck for tuesday, keep me posted.
Enjoy the rest of your weekend.
Pumpkin x
Well I had my first Paclitaxel today, plus normal Zometa infusion, so at hospital for about 3 hours which I didn't think was too bad! So one down, only 17 to go! What a long long road is ahead.....just hope & pray it does what it should do.
Not feeling too bad - bit spaced out & quite tired from the industrial strength dose of antihistamine!!! Just had about an hours sleep so feeling a bit more with it now & my Mum is here cooking dinner while I sit on the sofa - what a gem she is!
Will see what the next couple of days bring....but just relieved to have started.
Dugsy x
Hiya
Just caught up with this thread. I had paclitaxel from Sept 2010 finished it in Feb 2011 - 18 sessions of it. I did pretty good on it, but by christmas had a constant cough/cold. I didnt suffer anything else really, apart from the predicted hair loss. But I have to tell you it worked wonders for me, so much so, that since Feb nothing has been visible on my liver and that after 4 years, it was finally agreed to have a cosmetic surgery mastectomy on my boob to move the original lump. I have another scan tomorrow now, so fingers crossed there is no change.
I hope you cope OK with this chemo - weekly is more doable I think than 3 weekly as the dosage is less in one shot if get my meaning. It is hard as mine was every week for 18 weeks with a couple of misses over christmas and new year.
Good luck and hope you respond to it as well as I did. I also tried capcitabine, but it didnt work for me.
Take care
xxx
Hello dm1968,
Thanks so much for posting - that's very encouraging. It's always a boost to hear of people that have responded well to treatments.
All the best with your scan today - do let me know how you get on.
Dugsy x
H, just a wee update, finally got my first weekly pax yesterday, they kept me in over night just as a precaution for first one because I had a reaction first time I had docetaxol and a reaction last week to herceptin, but everything went ok and home now, not feeling to bad so far just really tired and woozy and wee bit queezy.
Dugsy how have you been over past few days since your first one? any major Se's.
Hi dm1968 like dugsy said it's always good to hear from people who have had a good response, long may it continue for you. Good luck.
Pumpkin x
Hi Pumpkin,
First of all just wanted to say sorry to hear about the mix up with your scans & treatment plan. It's bad enough being told you have to have chemo but being falsely told it hasn't worked must have been terrible for you! However, you must also be mightily relieved that everything is still stable - what lovely words they are!! Glad you have finally started the Paclitaxel - how have you been? I was very tired after the infusion, no doubt caused by stress & the piriton, and slept for a couple of hours. Also had achey knees & legs for 24hrs & a terrible headache which lasted a couple of days. And this weird spaced out feeling in the mornings! But on the whole not too bad & all SEs are manageable so far.
Planning a last BBQ of the summer (ha ha!!) tomorrow, with some friends in our garden. Hopefully we'll dodge the showers!
Take care,
Dugsy x
Hi Dugsy, yeah it's been a bit of an ordeal but treatment is up and running again. Been not to bad, had it on thurs, felt really tired yesterday, felt a bit dazed, kinda drunk like but not in the nice way! not to bad today just still tired, (slept twelve hours last night, restlessly though), sore legs and still a bit guidy, think it's like what you said about being a bit spaced out. Hopefuly be fine tomo. Maybe it'll be easier the further in we get. Hope your doing ok and manage to squeeze in a last barbecue tomo.
Keep me posted on how your doing and how you get on after your next treatment.
Have a good weekend.
Pumpkin x
Was quite relieved to read your post dm1968. I am due to start on exactly what you have had for secondary breast cancer to stomach and pancreas and am concerned about side effects. 4 years ago had docetaxel for the primary and it was horrid - ended up in hospital as well as the rest of the nasty symptoms. I take your point about the smaller doses - makes more sense to me now. I just remembered I felt worst around day 7 then and was thinking well what will I feel like having another dose at that point.
How did you feel after about 12 weeks? Thinking of Christmas and the family wanting to come and stay - pretty lively grandchildren whom i would love to see but ---!
Hope you are still doing well.
Sarcath
Hello all & welcome Sarcath,
Just thought I'd post & see how things are with everyone? I've just had my first week off from Paclitaxel & am back in tomorrow for number 4. Have to say I was surprised how tired I felt on week off & it has got my quite down as I presumed I'd be back to normal & raring to go!! Perhaps I packed too much in & expected too much of myself, so probably a lesson learned! Also hair pretty much gone over these past 10 days which has made me sad
Sarcath, have you started your treatment yet? Although weekly chemo is hard work, the SE's are manageable. I've found the main ones are tiredness & yukky taste in mouth.
Pumpkin, how are you getting on? I think you'll have done 3 by now as well won't you? Are you having a week off after each 3 as well? Let me know how you are coping & what your SEs are like.
I've got my sister coming down to help this week with my gorgeous 6 month old niece, so that should bring a smile to my face!!
Hugs to all,
Dugsy x
Hi Dugsy, I was wondering how you were doing, glad to hear your managing well apart from the tiredness and feeling a bit down, but i think you are right we do expect far to much of ourselves sometimes, and end up dissapointed when we can't do what we want.
I've had four treatments so far, no week off for me, i don't know why as a few others seem to get a week off too. I'm managing ok, my worst days seem to be 3, 4 and 5 when i get tired and sometimes a bit dizzy but i'm still managing to get out and about and do things, all in all not to bad so far. Getting scans after 8 to see if it's doing it's job, fingers crossed!!
My hair had started to grow back in the space between changing treatments but have been told it might fall out again, no sign of it yet though, and to be honest not that bothered, i'd happily stay bald as long as treatment works.
Hope you enjoy your time with your sister and niece.
Hi Sarcath, As you can see from the posts, although we are all different most people manage the weekly treatment ok, just take it a day at a time and listen to your body, do what you can without expecting too much and rest when you need to. let us know when you've had your first treatment and how you are getting on.
Pumpkin X
Hi Pumpkin and Dugsy
Only just seen your replies - I can't get used to this website - used to use the old one back in 2007/8 when I started off with all this and had no problems. Getting too old I guess. Anyway thank you so much for your info. It doesn't sound quite as bad as the 3 week cycle - or am I just kidding myself?
Had my info talk today ( could have done without really since have had 2 full chemo courses previously ) and start next Monday. We shall see.
I'll treat myself to a new wig I think - grey this time perhaps. It sounds as if many get the odd week off which suggests it's quite hard going. Feel nervous but desperate to get on with it at last after a very long wait.
Love to hear about your progress both of you. Good luck with it
Sarcath
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