Avastin and taxol - how many are on this?

Hi
I just started my treatment on Taxol and avastin (I have only recently been diagnosed with BC and scondaries and Triple negative) so this is my first treatment.

I’d just like to know if there are many of us on this and has anyone had any sucess?

I understand my Onc will know whether its having any effect in a few weeks. So I guess my next question is what else is out there if it isn’t working?

Thanks
Linda

Hi Linda I’m going on taxol in a few wks I’m doing a trial so I might get avastin but I won’t no I’ve got lung mets tn as well think we spoke we can tag along to compare notes xx

Hi Linda,

I had this about 2 years ago (see profile). the combo worked quite well.

There are also other kinds of chemo to try.

xx

Hi Linda - I think I might have said this to you (or someone else) on another thread so forgive me if I’m repeating myself, but I had a year of Avastin and Zometa, overlapping with 3 Tax at the start. I was diagnosed Stage 4 from the start with early bone mets. The combo worked really well for me - 18 months after dx I have had no progression at all, and after chemo had significant healing of my bone mets, which I have finished off with high dose rads and Cyberknife - so I hope when I have my next round of scans to find out I am NED.
finty xx

Hiya linda
avastin is not widely used for bc in this country as it has not been approved by nice. However it’s used much more in the states. Have u looked at the TNBC foundation forum? Google it- it’s an American site specific to triple neg bc + they are all very knowledgable on there + happy to share experiences + give advice.Lots of ladies on there are on avastin, or have been at some point so well worth a look.
All the best
tina x

Hi everyone - thanks for your relies. Unfortunately fell asleep yesterday before I could reply!

Gingerbud - thanks for the google sites - I’ll have a look at them. I see what you’re saying about not widely used in the UK - I wasn’t sure if it was because it isn’t that succesful or was a cost issue?

Laura - Good luck when you start. I know we talked on a separate thread but I seem to have lost it (the thread that is!). I’ve had two lots now and fingerscrossed no real side effects other than aching bones. Still dreading the hairloss but I’m perservering with the coldcap. Speak soon

Finity - when do you have your next lot of scans? I will keep my fingers and toes crossed for you.

Keep smiling
L
:slight_smile:

Linda would u mind me asking what area u live in have u got funding for avastan or are u nhs I’m not allowed to have it x

Hi Linda - I’m not sure when I have my next lot of scans - my medical onc implied they would be every 6 months for a while, but I saw my rads onc yesterday and she said no more scans unless new symptoms appear, which I wasn’t very happy about. She also told me Avastin has just been withdrawn in the states for use alongside Tax - it can still be used with Paclitaxel but not Taxotere or Doxetaxol - so I guess the UK will follow suit before long too.

Laura - it looks nearly impossible to get it on the NHS now - I got it privately, but with the news from the US, that is going to be even harder now.

finty x

Hi Laura/Finty
I have private health cover (thru work) so I’m guessing this is why I got Avastin (I live in the Bradford, West Yorkshire area). My insurance company says they will fund it for 3 years - but I’m guessing things can change
It worries me that they are withdrawing the use of Avastin as it makes me feel it musn’t be any good.

Laura - when do you start your chemo and when will you know what drug therapy you are getting? I really would like to keep in touch with you/

Finty - It must be so frustrating that they won’t do scans. Are you still private - could it not be pushed - or doesn’t it work like this? Sorry all of this is so new to me. I’m beginning to realise there’s a lot to learn

L
x

Hi Linda no i don’t know when I’m going to start they r still messing me about the trial is not ready for me to go on so I might have to have just basic taxol my gp gona refer me to royal marsden to see what they say I just want start all this stress on things they don’t do is not helping i hope it works on u tc laura x

Hi Linda - yes still private, although long term treatment isn’t usually covered on insurance, so I’m amazed you got approval for 3 years. The scan issue is a complex one, and with bone mets is especially so, as often there is not much to be done if there is some progression, other than tweaking meds. I will push for an annual CT scan to check for visceral mets, and I’m pretty confident I will get it. There is a need to balance not having too many scans - and I’ve had loads - with knowing what is going on all the time. Also if I have any symptoms I will get a scan easily.

finty x

Hi - Im on Taxol with Avastin. Not NHS funded but my onc said it was from a government ‘pot’ for expensive cancer drugs. I think it is really expensive (? £1000 per treatment) and I have it every two weeks. The info from the States seems to show it DOES really really work very well for some people, but not for others, and because it is so expensive, it is then not ‘worth it’ as for many it is an expensive waist of money! But, my view is if i can get it then I will give it a go, because I could be one of the ones it works well for! Hope you can follow that. I dont think it is being withdrawn because it does not work - it DOES for some people!! So, why not you and me!!??

Sadie xx

It’s certainly expensive - mine was billed at over £7K per treatment - but maybe it’s less on the NHS. I’m really glad you’ve got funding for it and hope you’ll be one of the ones it works for. Incidentally it’s not being generally withdrawn, just as a combo with certain chemos. finty x

Thanks finty. Wow, that is expensive!! I can see why it is being questioned, but very glad to be on it to give it a go. Just wish I knew if it was working!! I will assume it is unless I hear otherwise!! Positive thinking.

Sadie Xx

Hi sadie
I wondered how you were doing? Am I right in thinking you had your ‘week off chemo’ - did you feel better and manage to do nice things?
Do you mind me asking how you have felt since losing your hair? I know you told me it was after week 3, so I’m still trying to prepare myself.

Hugs to everyone
x

Hi Linda,
Really nice to hear from you. I felt good last week!! It was fab! Managed to drive nd my Son nd I did stuff together, bit of shopping, lunch out, movie nights. Both my daughter nd OH were away so it was really nice one to one time with him. I still needed a snooze pm and certainly was not ‘normal’, but much improved!!

How are you getting on with the SE? My nausea is under control but lots of meds needed! It’s the tiredness nd feeling spaced out that gets me!

My hair started to rapidly start falling out at the start of week 4. So, I got rid of it. Hubby chopped nd shaved. We both cried!!! But, I do feel better about it now. As you are doing, I was practically prepared nd this helped. Wore a hat to hospital today, wore my wig out yesterday, nice having choices!! I really wish this was not a SE, but it is! So, we either spend time stressing about it, or get on with it!!

Hope you are doing ok. Is the plan to scan you after three cycles to see if it is working. If so, which scans are they offering you?

Love to all

Sadie Xx

Hello ladies, yesterday I had my third cycle of Avastin and Docetaxol and will start three lots of FEC after that.

I have to admit the SEs haven’t been too bad for me apart from getting neutropenic last cycle and being taken to A&E and then having to stay on the oncology ward in isolation for a week on an IV antibiotic drip. One of the SEs of Avastin was listed as bowel problems and, since having it, I’ve been diagnosed with diverticulitis which has flared up causing an infection and high temps. On Friday the district nurse is coming to give me the first of 7 injections to stimulate the white blood cells to try and avoid neutropenia. The SEs for those don’t seem very pleasant - aching chest/ribs/spine and leg bones.

Losing my hair was another terrible ordeal, one which I was expecting but still came as a shock nevertheless. My husband shaved it off for me when it became too sparse and I have a lovely wig. I can’t bear seeing myself in the mirror though. I know it will regrow so that thought is always there.

The other side effects, which only seem short lived, have been mouth ulcers, constipation, one bout of thrush and, on Sunday and today, the most awful indigestion which I’m trying hard to keep under control.

Regarding the cost of Avastin - I read somewhere that it’s £21,000 a go. I must admit I found that hard to believe but it was a reputable site and now I can’t find it.

After the first and second cycle I saw my oncologist and she is convinced my tumour has shrunk considerably, just by feeling. I think I’m having a scan soon so that the Trials nurse can have all the details of the trial and send off measurements etc. I can’t wait to see if it’s worked as well as all the medical professionals I’ve talked to think it will.

Hi Flapjack, That is all really Interesting! Why are they moving you to FEC if the avastin + taxol are working, and i REALLY hope they are. Is it cos you are in a trial?

The injections to simulate your WBC are not a lot of fun. I had them with TAC two years ago. I had lots of bone pain, felt like my bones were really cold! Stock up on paracetamol, or something stronger!!!

I dont know a lot about diverticulitus (if that is how you spell it!!!). Do you mind me asking what your symptoms were so i know what to look for.

The hair thing is hard. I have kids nd they try to tell me it is ok, but it is hard for them too. Perhaps a little easier as this is the second time this has happened. Do you have kids?

I am taking Omaprozole daily for the indigestion. May be worth you asking about it if you have not tired it?

You sound like you have had your fair share of SEs. I do hope your scans are improved. Is it a CT San? Im not sure if i should be pushing for a bone scan too. Ive had spial mets as well as more receint lung mets. What is your story?

Thanks for making contact.

Very best wishes,

Sadie Xx Xx

Hi Sadie/Flapjack and ladies

Sadie I’m so pleased you had a good ‘week off’ and had a nice time with your son. Why can’t the good weather have stayed with us a while longer!

I had my third taxol and avastin yesterday - Like Flapjack, my onc visited me during the treatment and having had a good prod around seems to think there is a reduction in both my neck and breast lump. Needless to say I am pleased with. No mention of scan but there again I didn’t ask - my brain just seems to go to mush when I spaek to home

But heres the questions I think I should be asking. What happens next? Do you stay on chemo indefinately with secondaries? If the tumours shrink does that mean they can go completely? Why can’t secondaries be cured and only treated? I know I should ask my onc all of these questions but think that because I was dx with both primary and secondary at the same time I seem to have missed out a lot of questions.

Sorry to waffle but if you can help me with any of these questions I’d be very grateful.

Linda
x

Hi Linda - Im so pleased there is some positive news for you. That is fantastic!! My mets are ‘hidden’ (lungs)so I can not tell from the outside what is happening to them. Maybe that is why I am having scans in 2 months.

I know what you mean about all the questions (and they are very good ones!!) being there after your ONC has left the building. It sounds obvious, but how about writing them down and then they are there infront of you for the 5 mins you have to chat to them to make life channging decisions!!

At the start of chemo, my ONC said I would get 6 months worth of chemo - and then ‘monitoring’. However, if the Avastin works I want to STAY ON IT!!! There are ladies in the States who have been on it for years and years. The funding is bound to be an issue - but if it has been proven to work for us why cant we carry on!!

Lets keep asking our team the quesions and sharing the answers here…

Love to all -

Sadie xx xx

ps Its not waffle Linda - all very important!! Hows the hair??