Bestfriend – your friend is about to start on the same treatment I started on two weeks ago (Taxol and Avastin)! Like her I’ve been told there is about a 50 % chance of it having an effect (slowing tumor growth ). I have no results yet as it is very early days (only has two weeks worth) but the nurses this week on the ward were so positive that I was on the best treatment. They had the Avastin rep round earlier that week and were full of the research being positive and the company is pushing for it to be a ‘first line of defense for primary BC’ too. So please pass this on to your friend – if others have had wonderful results , why not us??
Jo – Sorry you are having some rubbish days and thank you for putting some of your energy into replying to me. I really appreciate it!
Claire – I had the booster jabs two years ago when I was having my TAC – not comfortable, but they did the trick! Made my legs ache a lot though! Do hope your bloods sort themselves out soon! Maybe the sunshine will help!
Neelima – Hi, and welcome! Sorry you have had a reaction to the Taxol. Was this whilst you were in hospital or after? I’ve only had two, but they said the chance of a reaction, after the first was ok, was very small. So, you sound very very unlucky! Hope you are ok!
Thanks for all your info about reducing Taxol by 10%. I will see what my consultant says on Monday. However, I seem to be tolerating it better this week. Less tired but the walls do keep moving towards me at an alarming rate and corners take a bit of negotiating! Hope the coordination comes back soon! Weekly chemo takes a bit of getting used to! It would help if the NHS were a bit more efficient and did not keep me waiting for 1 ½ hrs for a consult with v v v poor Dr without even an apology – and it was on a precious good day aswell!! (rant rant rant!!)
And now to the sunshine………………… it does make me feel better and I do hope it makes everyone out there feel more energized and ready for what ever tomorrow will hold for all of us!
sorry to butt in, just wanted to say i had an alkergic reaction to my first taxotere chemo last year. It made my face feel hot, felt like it was hard to breathe and like thete was a warm but heavy feeling spreading out through my chest. My oncologist changed the drip to ultra slow and arranged a huge dose of piriton and then tried to continue with the treatment. It worked as i didnt have the reaction again, and for my last two taxotere they gave me piriton and a slow drip and it was fine. It was really scary having thd reaction though so i feel for you neelima. I know you are on a different but similar drug, maybe this will be an option for you too.
Claire, sorry to hear about your white cells deserting you. Hope you got out in the unseasonal manchester sun z bit today. Good luck for your scan, i will keep an eye out to see how you are doing.
Thanks Sadie, somehow its reassuring to know someone has been told the same thing, and that two weeks in, you seem to be coping ok with side effects, 'tho I know they could be different for my dear friend Heather… I suppose staying positive is the key, and the sun does help! She is having a bone scan today, just praying there is no more spread. She is very upset at the prospect of losing her hair as with her previous 2 chemos she didn’t…o well x
Thanks Sadie,Vicky and others.
What a journey…just goes on and on.I am seeing my oncologist tommorow.I will see if she wants me to try the taxotere instead of taxol.I would be grateful if she sanctions abraxane which I hear has less side effects.Need your best wishes.We all need those.
The hair loss is not a lot of fun (to put it mildly!). I lost my hair very quickly on TAC two years ago. Two weeks into the weekly Taxol I’ve still got it, but am wondering when it will go? Can any wonderful ladies out there shed any light onto this?
Neelima – you have my very very very best wishes, and a lot more besides! I do hope the appointment went / goes well!
Claire – when is your scan to check it is working?? Let us know and I will send special thoughts to you too (not sure if it helps, but feels like I’m doing something!!)
Tina – Long time no post? DO hope all is ok and you are still enjoying celebrating tumor shrinking!!
Best wishes to all of you!
Sadie Xx
PS Where has the sun gone!! I booked it to shine on us all weekend and it has disappeared!!
I did Taxol last year and I’d say I lost my hair - not all of it mind, but a lot, after the third dose. Are you having a week off after 3? - it’s nice to feel “normal” again and gives you something to look forward to. Hope you and everyone else is OK.
Yes,I get a week off next week - cant wait! My ‘fog / double vision / lack of abilty to concentrate or walk in a staight line’ sets in wed eve and hangs round till Sunday so it really is most of the week. Did yours follow the same pattern? The prospect of a week off is soooooo exciting! Will be able to do something with my son as it is his first week of the Easter hols - good timing! Ive still got my hair (just had 3rd dose) but not for long!!
The thread is a bit quiet, hope all is ok! Smiles to all!!
Hi guys.
meeting with registrar as it turned out was naff. It wasn’t bad news exactly but I felt very deflated. Was in with chemo witch tioday and told my nurse that I wasn’t very happy and wether I could talk to BCN. The nurse was really lovely and actually located my prof who came to see me! RESULT!!! Now as well as tax, herceptin and zometa he has given me aromisin and anti inflammatorys. He really is slinging it all my way. Also I have a ct scan and mugi scan coming my way. Happy days lol. Lets hope this does the trick as my markers have been static since feb. He reckons there are hormonal elements to my tumour and he is aiming for me to have surgery at some point.
The registrar didn’t give me a particularly warm feeling and as I pointed out sweetly to my onc, it just wasn’t the same as seeing him.
x sarah
Glad you’re getting more meds action, Sarah - hope you have good news when it’s scan time. Wow! - you’ve certainly done a lot of chemo. - well done for hanging in there! I did 6 FEC in 08 and 18 taxol last year - I’m not sure I could have done them consecutively!
Sadie, I did find the taxol pretty hard going - had it on a Tues.pm (at home, which was great), steroid buzz till Thurs + sicky feeling, then crashed and v.tired till Sat. Sun. and Mon. more-or -less OK, then started all over again Tues! I would say the nausea was the worse SE for me and the meds didn’t really work that well to combat it once the weeks wore on. BUT, it’s great having the 3rd week off and I was able to do some nice things - did a Pink walk for BC,(semi!)organised my parents-in-law’s Golden wedding celebrations, went on hols etc, so I was grateful for that week off! Hope you enjoy nice times with your son at Easter.
I am feeling well, though my lymph. arm is still puffy and annoying. I still haven’t started my Census job due to a kerfuffle over my adoption certificate. So, looks like that’s not going ahead, but at least I’ll get Carer’s allowance reinstated which I get because of my son. Seeing my onc. in about a month - don’t know if I’ll get a scan this time. Hi to Tina, Claire and Tara - hope you’re all managing OK. Welcome to Neelima and Bestfriend.
Hi girls,
Meeting with oncologist went well.she has applied for abraxane. Its 3 week since I had my weekly taxol.i need chemo now.hope things turn out well next week. Still not heard from Christies regarding parp.
Sarah, my onco does not give much steroid for weekly dose…may be thats why I had reaction.my first dose was 8 mg dexa, then 4 mg and nothing other than domperdone.Enjoy your 3 rd week off
Just saying Hi,
Going bit quiet here.How are you going girls… I hope everyone is stable. Are any of my friends working? When I get get good days I want to go back to work. I am really scared with the intermittent crippling fatigue. What’s your work experience like?
Sending my love take care
Hi Sadie/Ladies
Hope you don’t mind if I tag along. I’ve just had my first lot of Taxol and Avastin (Wednesday), as yet no side effects. I’m having it weekly but my second week is just Taxol - Avastin is every alternate week - is this the same for you?
Like everyone I’m dreading the hairloss. I managed cold cap but my BCN said it was probably easier because I have very thick hair.
Anyhow - I just wanted to say hello and wish you all well
Hi Linda, Nice to have you tagging along!! I have the same, but the 4th week ‘off’. So taxol and avastin weeks 1 and 3, just taxol week 2 and a party week 4!!! The SE start 3 days after the treatment, tiredness , exhaustion, nausea is under control!! So, hold on… I actually found the first week the hardest so far. Weeks 2 nd 3 were easier, but still not fun for Thursday, Friday nd Saturday. Still got my hair, but not for long. That makes me sad. I’m only a few weeks ahead of you, so pls keep Im touch. I had bc in 2009 with Mx and Tac, spinal tumor removed Nov 10 nd now lung mets. What’s your story??
Hi. I have not been able to keep working since my spinal op in Nov. With weekly chemo I just could not do it. Plus, if I do have some energy, I want to put it in a different direction. This usually involves doing something with my 11 nd 15 year old. They are finding this all a bit difficult. We have been making scrap books and watching DVDs of when they were little. Trying to cram in ‘quality’ time. Work used to be SO important to me, 24/7 focus, but not any more. I hate to think about never working again, but I know it is not the right thing to do now. Can’t even scrub my teeth without having to sit down this morning so work is a million miles away.
Hi Sadie
My story is quite a short one - its all happened in the last 30 days. DX with invasive ductal grade 3 BC on 1st March - planned to have lumpectomy and radiotherapy, then a week later advised secondaries in neck/lymph glands (I have a lovely large lump on my neck - I feel like something out of Alien). When saw ONC he also advised me I was triple negative, so surgery cancelled and straight on to chemo - so all in all its all been a bit quick and very scary.
For the time being I’m signed off work - like you I had a job that I absolutely loved but I just can’t face it at the moment and need some time for myself.
Was your spinal op a success for you? With two children I’m guessing you have plenty of daily challenges!
I’d love to keep in touch with you
Linda
ps I think I spoke too early - keep rushing to the loo but fortunately not a lot happening!
Ladies, could one of you pop onto a thread in latest posts started by husband220. He’s supporting his wife who has triple negative lung mets and could do with some help, and you’re probably the most knowledgeable group to do so. I’m very new to this cancer stuff, and also very lucky to just have primary, so don’t have any information I can share with him.
Hi All
I am new to the forum - was diagnosed with large tumour in liver 7 cm and breast triple negative 6 days after giving birth to my beautiful boy in June. I have another 2 1/2 years old and two step children so a busy working mum, or was.
I had chemo x 6 EC and was very effective. Has mastectomy Jan and liver ablation in Dec and scan all clear 3 weeks ago. Then week ago little lump popped up over scar so more surgery next week to test. If positive have to have radiotherapy but not sure why didn’t have ? I am unusual apparently as no nodes yet had spread already at diagnosis. No history in family. I am taking iscador and doing the no dairy, loads veg, no sugar or meat diet with juices etc and taking suplements but wonder what else people are doing ?
Thanks
jjane
Hi jjane,
Welcome to this group.I have recently joined as well.Mine was also no nodes. It looks as If triple negative behaves in completely different way and spreads by blood stream earlier. It’s unfortunate that all breast cancer are lumped together and treated in same way. In my opinion carboplatin,taxol seem to be more beneficial than others. Maybe in future patients would have different chemo according to their gene signature. Hey some of us born at wrong time! Goodluck to you
