Thanks Laura that reduction sounds brill, I hope it continues to work for you. I’ve been told that i might remain on this weekly dose for quite a while with a few breaks now and again, but I dread to think I will be on it forever and not get my locks back again. Ridiculous isn’t it? I know hair is not as important as annihilating the cancer population that has taken up residence in my body!!! Would love to hear from anyone else on a weekly dose… xxxx
Hi Wannee
I’ve just had my 10th lot of weekly Taxol and still have a full head of hair - so you never know! I’ll keep my fingers crossed for you.
Linda
ps I have been using the cold cap (chilly chilly)
x
Hi Wannee,
Sorry my hair went v early on (about 3rd Taxol / Avastin). Just had number 12. My head has baby fluff but defo not hair!
Weekly chemo is diffiuclt and htere does not seem to be very many people on weekly chemo. So, pls stay in contact - we can share notes! I do not want to give you a long list of SE as we are all differnent, but pace yourself! It is the fatigue that is the hardest!
Sadie Xx Xx
Hello you lot, its YONKS since I’ve been on here…about to have taxol no 7 and managing ok. Hair has just about gone, got quite a scary looking skinhead style but I got a fancy wig to cover up my baldness (I’m getting quite a collection of wigs…) and I get a bloody nose now and again,. anyone else suffering with this? I’ve been told its nothing to worry about. Anyway, No7 on Friday then I have 2 weeks off as we are off on holiday hurrahhhhh!!! Would be lovely to hear from anyone else …
Hi Wannee - oh yes - a tissue full of blood every morning!! Wonderful way to start the say. Im on number 16!! My nose has been like that for a while now. Team not worried!! 2 weeks off - what joy! Im off to France on Friday - an extra week off. V excited! Enjoy your hols too!
Hugs,
Sadie Xx Xx
Hi Sadie, nice to hear from you, is no 16 your last one then? I’ve been told I am getting 16 but most girls can’t take it past 14??? Well done anyway, think we should all get a medal after enduring this lot this every week, but I have to say in a weird kind of way I look forward to my visits to the onc unit, despite being jam packed full of really white, old people getting their bags of blood administered to them. I love getting my NHS “snackbox” for my lunch (sad or what??) and those nurses are just the best. Anyway, enjoy your hols, I love France, might go next year and do le camping again xxxx
Hi Wannee, My team has planned 18 for me. Then Im having scans to see what is happening. Follow that my onc has said if all is going ‘well’ and Im still coping, i can carry on!!! Im really not sure about this as ive never heard anyone have more than 18. Im really in two minds. If its working, great to keep at it, but its b****y hard work!! I need to do some more research. Have you, or anyone else reading this, heard of more than 18 taxol??
I dont get a snack box!!! My Mum has to go for sandwiches!!
Sadie Xx Xx
First things first… go for sandwiches??? Thats terrible!! We get offered the full 3 course meal or snackbox, and one lady today had a hot 3 course meal and I noticed she had a snackbox aswell that she emptied out and stuffed in her handbag!! Good thinking, I thought, think I might try that next time before “Dave” cuts it!! Anyway, I have heard of the taxol being a long term kind of thing, but I wouldn’t fancy that as it is hard work and I’m not really at the hard stage yet! Plus I would quite like to have my hair back again! Hope you are enjoying France, still freezing here. Au Revoir xxxxx
Hello Taxol ladies,
Thought I’d join your thread as I’m starting weekly Taxol next Tuesday - am due to have 18 so we’ll see how it goes! Not looking forward to it at all - dreading losing my hair again & putting on even more weight 
BUT if it works then I guess these things are a small price to pay.
Have been struggling with my ‘dark thoughts’ recently & finding it hard to get my positive vibe back. Life just seems so harsh right now & I feel like everywhere I turn there’s a brick wall. Any suggestions on how to inject a bit of happiness back??? I guess retail therapy always helps!
Sorry for moaning - I’ll be better once I start next week.
Thinking of you all & hoping all are coping ok 
Dugsy xx
Hi Dugsy
Sorry I can’t help you with your question/s but just thought I’d bump this up for you.
Good luck with the chemo and make sure you have a good weekend before the new regime starts
Nicky
Thanks Nicky - we are going to have a bbq Saturday & hopefully get in our pool if this awful weather decides to improve!!
Take care,
Dugsy x
Hi Dugsy, Sorry for the delay in replying. I’ve been away. I’m on weekly taxol with avastin. I had number 17 today. So, I know how it effects me, but everyone is different. It is hard, but it IS WORKING!! I’ve got bone nd lung mets. All mets shrunk or reduced after 9 doses. Any specific questions, pls let me know! I get v v v tired but nausea under control. Peripheral neuropathy not great in my feet now. And…I hate marmite now!!!
Hugs
Sadie Xx Xx
Hi Sadie,
Thanks for the post - I’ve read some of your posts on the Triple Neg thread. Hope you had a good holiday - we got back from America a week ago & it was so nice to escape for a while. However it’s down to earth with a bump now as I start my Paclitaxel regime tomorrow. Wow number 17!!! Well done - you are almost at the end!! I do hope your good response continues for you as long as possible. If you don’t mind me asking, what treatment plan have they in mind for you after the Paclitaxel?
Getting to number 17 seems a very LONG way off for me at the moment, but I HOPE I manage to get there & also have a good response.
I also really hope I don’t go off Marmite - that would be terrible, I LOVE Marmite!!!
Dugsy xx
Hi Dugsy. Yes the marmite is a massive problem!!! (If only this was the only problem!!).
Good question about ‘what next’ nd I’m not sure. I asked registrar today who was not clear - massive language barrier! But scans on 12th Sept nd onc meeting on 19th to plan. Last meeting, she said I can just carry on whilst it is working. As I sit here now, I’m happy with this, but as se kick in, I know I will be thinking 18 might be enough!!! But if its working…
Where are your mets? Are you trip neg too?
Holidays are fab for an escape. Off to devon on friday for another one. Delaying number 18 for a week. This is my 3rd delay overall. Keep it in the back of your mind, extra weeks off helps sanity as it is hard. But just take it one at a time, nd keep in touch.
Sadie Xx Xx
Hi Sadie,
Sorry for delay in reply - I had my first Paclitaxel yesterday morning so feeling a bit washed out!! All went ok, but did feel VERY tired when got back (due to stress & piriton I’m sure!!) so slept for an hour or so. Then got achey knees & legs, but that seems a bit better today - just some lower back pain today & the ‘spaced’ out feeling I had seen you mention on the other thread! Hope that improves soon!
Had to take my son to the dentist this morning for his first appointment about a brace, so that helped take my mind off my problems a bit!
I have bone mets & no I’m not TN. Had primary dx nearly 4 years ago & then secondaries a year last May. Went on AI’s for nearly a year, then when they stopped working had oral chemo for a while (Capecitabine ) which again worked for a bit then showed mild progression in bones, so here I am starting Paclitaxel. So hope this one works for awhile - it’s so emotionally & physically draining.
Holidays are definitely a life saver!!! Enjoy your break to Devon - the forecast for the weekend looks quite good we are hoping to have a BBQ with about 12 friends on Sunday & get the children in our pool, so no doubt the heavens will open!!
Take care,
Penny x
Hi Penny - Hope you got some sunshine and paddling pool time!!
I get very tired on chemo day too - as the nurse gives me the Piriton, she says ‘goodnight’ and I fall asleep! And the spaced out feeling will return on Monday for Nubmer 18!! Still, feel GOOD TODAY and that is all that counts! Take Care.
Sadie Xx XX
Hi All - I thought I would bump this thread up!! Hope you are all ok! Ive just come back from Taxol / Avastin Number 18!! Very proud of myself!!! Im getting mixed messages about what next… My ONC has been talking about carrying on, but the nurses today said this may be at a much lower dose. Im now on 90mg per kg and the ongoing Taxol is 25mg per kg - a walk in the park!! It all depends on the scan on Monday 12th. So - I will get through this weeks SEs and then meet my ONC and discuss my opitions.
Anyone ever had more than the 18 Taxol treatments?? Would love to hear from you…
Hugs to all,
Sadie Xx Xx
Hi Sadie,
Well done for reaching number 18!!! What an achievement over a long period of time - I have everything crossed for your scan on Monday & results. Hope you don’t have too long to wait for them.
I haven’t heard of anyone doing more than 18. Perhaps if you do carry on you will make it into the record books! How would you feel about more Taxol, even on a lower dose?
I have just done number 3 this week & am already really looking forward to my week off next week. Have booked in some coffee mornings with friends & a meal out so far. My SEs so far seem to be tiredness & yukky taste in mouth which both last until Saturday (I have treatment on Tuesdays). Hair just starting to slowly come out, but I have got myself a lovely wig which I’m really pleased with & which has drawn some fab comments from people.
Ok, both kids finally back at school today so I’m going to enjoy a little bit of peace & quiet!
Penny x
Hi Penny - Sounds like you have a good week planned. I really dont know about more Taxol. Half of me wants to keep going and going and going…so I keep going and going! But weekly chemo for 6 months is hard going and a break would be nice - but I dont want to risk anything! Sorry - wittering and going round in circles!
My kids back to school too - the quiet is odd, not sure I like it!! How old are yours? Mine are 12 and 15 and the highlight of my life!
Glad SE are not too numerous! My hair has grown during treatment but very thin and pathetic - I stick to hats and wigs! Everthing tasts of salt to me. Ive gone off marmite!!! Very sad!
Sadie Xx Xx
Hello girlies, sorry not been on for yonks, had a most exotic and fantabulous holiday in the Maldives,I can recommend this totally, but yes, back to earth with a huge bump. Have had weekly taxol number 8 and am due number 9 on Monday, have changed my day due to a hen do tomorrow night and a wedding coming up on a Friday too. Dugsy hope you are coping, I am finding the weekly thing OK, but go straight to bed when I get in after my treatment as I’m so tired but after that the steroid kicks in and I’m bouncing for the next 24 hours or so. Hair has gone but have a great wig and isn’t it much easier than actual HAIR!!! yes my kids back to school too - 11 and 7, house is v quiet. I get latest CT scan results on Tuesday and I’m dreading it as every one so far has been bad news. Think I’ll go into that room already sobbing into my damp tissue I’ll be so scared!!! Luv to all, hope you all have a great weekend xxxxx