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piclataxel & avastin - Think it stopped working - what next?

9 REPLIES 9
valkeh
Member

Re: piclataxel & avastin - Think it stopped working - what next?

Dear Jo,

Sorry to hear you are in such a difficult place at the moment. i realy feel for you. You know you are not alone. All of us we are behind you and sending you positive energy and prayers.

Keep fighting
From another BC fighter big hugs
Valia
x x x
millykins01
Member

Re: piclataxel & avastin - Think it stopped working - what next?

Thanks Sarah - As I say the taxol worked well for me til now but there's no reason to think it will stop for you - we are all different & it really is down to how each individuals body reacts & responds. Perforated septum sounds nasty. I do suffer from a sore nose & some nose bleeding but so far septum is intact. luckily no serious side effects like blood pressure rise etc - don't know if they will keep me on it now but will find out in a few weeks I suppose. will stay on it at least until scan results & next ONC meeting in 3 weeks anyway so I just need to try to push things out of my mind until then.
big hugs to you & thanks - having freinds on here does help us feel less alone talking to others who truly understand
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

sarah66
Member

Re: piclataxel & avastin - Think it stopped working - what next?

Hi jo , glad to hear you sound more positive , I am having taxol and have been interested and gained some optimism from your posts, you do sound like a strong lady, but I can totally empathise with how you are feeling, re,: children and family etc my two are 11 and 16 but like you away we have our dark moments when thoughts take over,
I had taxol day 1of 4 th cycle, they are carrying on for a couple more cycles, so similar to yours was on avast in but was stopped as I developed a perforated septum in noise, lovely.
keep strong
sarah x

millykins01
Member

Re: piclataxel & avastin - Think it stopped working - what next?

Thanks Nina & Nicky - I so appreciate any responses I get as I just feel very scared & alone but I know I am NOT! - If I can just buy myself some more time with my wonderful family and friends that is all I want - well of course I do want the miracle but hey don't we all. being triple negative just feels like the death sentence right now - everything i read 7 see about it says - "This agressive form of BC" "Very hard to treat" etyc etc & it scares the S*** out of me - But I know you understand that part. I have to say my OH & I have spent the day sorting out our mortgage, conveyancers, MOT for the car & other positive things for our near future as we are moving so that felt really good to focus on & I am trying my darndest to stop thinking about the scan & results etc until I have to & know what they say but it isn't easy.

I just can't stop the massive feelings of guilt I feel for putting everyone through all this - just like I felt when first diagnosed. They keep telling me it isn't my fault & although I know that really it is very difficult not to feel like this as it is because of me that all this horrible upset & emotional horror is happening. I really do generally stay very positive & get on with things. I have coped very well on chemo & still manage to carry on with life apart from the odd days/times when I get exhausted & have to rest but I am on the whole very well with it. So I am hoping that whatever they put me on next will just flipping well work for me & halt or slow this latest progress. I will put up with no hair, nails or anything just to hang around for longer I really don't care about that it's just nothing compared to living to see my wonderful daughter grow up some more.

Huge hugs to you & thanks so much.
Jo

Guest user
Not applicable

Re: piclataxel & avastin - Think it stopped working - what next?

Hi Jo - what others have said re chemos is bang on - there are lots of poisons they have out there to try you on!! And not all of them lose hair - I'm on oral Capecitebine and have been since last September - no haior loss and my hairdresser actually asked what I was doing to my hair - it was in better condition than she's seen for years! I'm a boney lady BTW, and the Cap is a) giving me no side effects except a tingling lip and nose and b) holding me stable. I felt like you when I was first sec dx and then couldn't cope with aromasin, then tamoxifen failed me - I was dead and buriued in my own mind. I know I have at lreast 3 more chemos 'in hand' if Cap fails me, but one lady at my hospital is on cycle 180 - 3 week cycles - work it out!

So don't fret - you'll be around and causing mischief for a while yet - and maybe even with hair!

Nina
nicky08
Community Champion

Re: piclataxel & avastin - Think it stopped working - what next?

Hi Jo
Sorry to hear the chemo combination has stopped doing its job, something none of us want to hear. But as this is your first treatment regime I'm sure they will have something else they can use, it's the not knowing whats going on that's the worry isn't it? I hope something gets sorted soon so you can get on with dealing with the little *uggers and that you can all enjoy your holiday.
Nicky x

millykins01
Member

Re: piclataxel & avastin - Think it stopped working - what next?

Thanks for your comments - Taxel & avastin is the first treatment they tried & it was working so well this has been a real shock. As you say it is the waiting & uncertainty that is so hard. I was very happy that things seemed to be going well I really think I had convinced myself I was going to be the exception that would end up NED & in full remission - Bloody fool that I am but then just sitting there thinking you are going to die isn't the answer either of course -
I know I just have to get through the next few weeks for now and at least they are carrying on with this chemo until they find out what is going on so i don't feel left totally up in the air as I still go in every week & we have a holiday at centreparcs booked for my week off so that will be a great distraction. I booked it thinking I would have finished chemo but they kept me on it as it was working so well at the time after the CT scan. I decided we are going anyway even if I feel rough I will be OK and my daughter & husband deserve a lovely break as well as me.

So much for thinking I might get some more hair back - will no doubt end up completely bald if the change chemos - BUT do I care NO - as long as it keeps me here I can cope with anything. Luckily I have coped very well with treatment 7 had no low bloods & fairly OK certainly copeable side effects so I know my body can take more treatment. The team are VERY proactive so I am confident they will have something up their sleeves - As long as they are willing to try so am I. XXXXXXXXXXXXX Jo XXXXXXXXXXXXXXXXXXX

sarah66
Member

Re: piclataxel & avastin - Think it stopped working - what next?

Hi jo fingers crossed for you , I,m sure there is a chemo that will work for you apparently there are lots available, I do not really understand about tumour markers no one has discussed this with me. I am seeing onc tomorrow to get results of ct scan o see if tail is working, I have picked up lots of virus type illnesses lately and missed 2chemos , thinking of you
sarah x

Angelfalls
Member

Re: piclataxel & avastin - Think it stopped working - what next?

(((((((Jo))))))) I'm so sorry to hear you're struggling with the dark voices we all hear in our heads from time to time and which seem to get especially loud when a treatment fails and we aren't sure what's next. It's that bl**dy uncertainty that gets to you, isn't it?!!

You don't say which other treatments you've had, so it's impossible to know what your onc may suggest for you next, but there should be more chemo options available to you. Have a look at the Macmillan site which may help you find treatments you haven't had yet:

http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Breastsecondary/Treatingsecondarybreastcancer/Treatingsecondarybreastcancer.aspx

If it is time for a change in treatment, I really hope your next one will work wonders for you and for a long time to come. xx

millykins01
Member

piclataxel & avastin - Think it stopped working - what next?

HI all. I was DX with secondaries last July & have been on Piclataxel & avastin. small mets in lungs, lymphs all up in chest & neck and some in bones. had a scan in feb & it showed "very good shrinkage" phew I relaxed. Had an ongoing "cold" last few weeks & gland up & cough. spoke to ONC & now my tumour markers show they have been going up. the had gone down to under 30 & 50 & now are at 165 & 80. I am being booked in for another CT scan but I am petrified at the speed of the turn around & also what happens next. will they change to another chemo - what if they say sorry that's it. does anyone have any experience of this happening & can reassure me that I might not now be on the "terminal" pathway just yet. The timing could not have been worse either as we have just sold our house & had an offer accepted on one so are embarking on the house move over the next few months. I just want to get everything settled before I get ill as this new house is very close to my sister & 3 friends who live very near so that we will have support on our doorstep and when it happens my husband & daughter (6) will get the help love & support the will so need.

All I wanted was at least another year to get all this sorted. I do hope there is someone out there this has happened to and you can give me a chink of light as I am in a very dark frightened place right now. I will be calling BCC on Monday for a listening ear & maybe some hope.
Jo