Cheers Fizbix - I have come to terms with it now (I think!). The fact that my onc has told me that they are re-evaluating the use of tax as a 'standard' treatment has helped - I'm obviously not the only one with problems! Just sitting here waiting for the gcsf injection to kick in - can't sleep for various minor aches circulating my body - so co-codamol at the ready for when it really starts to go!
Actually feel quite well at the moment - though I went shopping this morning, and seriously underestimated how tired I was, and how much my feet are still bothering me. By the time I'd parked the car, and walked into the shop I was knackered! Picked up a tin of wood polish and some wire wool (yes - working on the wood is back on the agenda lol) - paid for it and went home - not the most exciting shopping trip I've ever had.
Hope you're keeping well (ish lol)
Magz 175 - sorry meant to mention this before. I have to say that I think the cancellation of treatment is almost as huge a shock as finding out you've got to have it in the first place.
If you think of the whole range of emotions we all went through then - you will probably have them all again - because they all come as a result of having shocking news (I mean news that is an unexpected major change). All these negative feelings are normal and have to come out - just as they did for all of us at the beginning - and still do occaisionally.
As we all know so clearly on here - life isn't perfect.
There is no way you are a failure - this is like the anti-climax after an exam or something - except you missed the exam! I have to say if anyone is a failure it's the people who have developed the drugs - in that they aren't yet suitable for everyone yet - and they are also doing their best so I don't mean to be rude and what they are doing is in many ways marvellous - it's just not perfect yet.
I think the other thing you have to think of is the stats .....I know you like lots of info and have been making many calculations on the subject. I think that you have to remember that (as far as I understand it - please correct me if I am wrong) that even if someone had odds of 5% (yours are far better than that) it means 1 in 20 people would survive. The one thing that everyone says makes the biggest difference is personal attitude - and yours is fabulous (ignoring your hiccup). So I think you should just focus on getting through the FEC's and then getting on with life.
Sorry you are wiped out by the FEC - this has been happening to me a lot lately - I have never understood how on earth you ever managed to do all that ironing and cleaning!!!!!! I sleep for a minimum of 12 hours out of every 24 - usually as a 4 hour rest and an 8 hour sleep. Can't get through the day otherwise.
Lots of love
I just popped on to say that I was feeling much more confident abut Tax 1 tomorrow (less than 12 hours) ... but I think I've just changed my mind!!!!
OMG Sari - I am SOOOOO SORRRY to hear about what happened to you! I hope you feel much better soon and that the improvement in your hands will soon happen in your feet.
Good luck and wishing you a full recovery - even if it will take a little while for the nerves to sort themselves out.
Lots of love and a big hug >>>>>>>>
Thanks everyone for all your kind messages. I'm kinda coming to terms with it now. Suprisingly enough the 5th Fec (instead of 2nd Tax lol) has really knocked me for 6 - more so than any of the other fec's did. Don't know if this is because the tax is still lurking about somewhere. My feet have gone numb again,all the skin is peeling off my hands and I just feel so bloody knackered.
Sarig - I am so sorry for what you are going through - guess that's what my onc was on about. Hope you manage to get something sorted
I was in similar situation. After 3 fec and 2 tax, my last tax was cancelled because onc felt that it will do more damaged.
I had a bad case of hand-and-foot syndrome and has been on wheelchair since Nov. I have a terible nerve damage and cannot stand or walk unaided. My fingers are getting better, I can dressed and cut my own food now but my both index fingers are stiff and sore.
No one seem to know when my feet will heal.
You hunny are no failure. You have gone through so much and battled so hard and don't you forget it.
At the end of the day we are all different, with different treatment plans, plans that need to be adjusted according to our individual needs and that is all the onc has done..adjusted your plan to meet your needs...
As you say the steroids may be having that downer affect on you and that does affect the way that you think etc.but hunny until the downer passes take some strength from your cyber pals...
Thinking of you and sending you a hug Deb xx
We all have our down days,and are expected to go through a lot with this bloody disease.Please don't feel a failure,you are a strong woman and together we will beat this.
I also want to get back to some sort of normality and hope to go back to work sooner rather than later
Take care, stay strong,
You are NOT a failure and thats for sure. So f ar you have done great and as everyone says you are still having FEC and herceptin. You have gone through so much and still are with the rest of the chemo course.
Please do not beat yourself up about this and hopefully returning back to work will help with getting back to a sense of normality.
Take care and i'm thinking of you
Do remember love that you have Herceptin to come and that can do all that tax can and more.love horacex
Well got the prosthesis - and it's got a nipple ! woohooo looks much better than the old comfie thing - and isn't too heavy. They are going to try me with the self adhesive ones too, but can't do that till 6 months after rads so will be at least september - but they have me on call back for that.
Have to say the fec has just knocked me out completely - fell asleep yesterday afternoon at 1, woke at 3.30 when youngest came home from school - fell back asleep at 5.30 and slept till 10.30 - had my tea ( a banana lol) - and went to bed at 11.30 and slept till 8 this morning. The steroids normally send me all the other way - bouncing off the walls - think I prefer sleep mode!
Still struggling to come to terms with not being able to do the tax - dont know why, but I feel such a bloody failure, though maybe that's the steroids making me feel a bit down and beating up on myself - who knows? Spoke to my boss yesterday about going back to work when Fec is finished - I'm going in to see her on 6th May for a chat. Feel like I just need to get back to some sort of normality now - though I doubt it will be the normality I knew before BC !!
Thank you all so much for your kind words - this site has been a blessing since day 1 for me....I'd have never got as far as I have without you all
So sorry to read your news as Fizbix has said 6 FEC does seem to be the norm round here that is what I am having plus rads. Good luck with the prosethis (too early to spell lol) it is quite heavy but strangely enough it makes you feel balanced. Will be in touch later
Love and hugs
Good luck with the fitting.
I just wanted to day I think you have been very brave about the whole thing and really "gone for it" and grabbed the bull by the horns so if it takes you a little while to re-orientate don't worry.
As SSS says many people often only have 6xFEC anyway so maybe that's what you might have had in the first place had you been with a different onc. I had a long conversation with a friend of mine who knows (still in the closet) and she has a lot of experience of cancer in her family and she only said the other day that she felt that in 10 years time the doctors would look back at what they are putting us through now and say "look what we put them through!!!!" meaning that it might be a bit "belt and braces" at the moment .. so at least you've got the belt even if the braces have been cancelled - but remember you did do one!! ... and your getting more belt too ...
Glad you'll be able to get back to work in time for the end of your contract - that's fabulous!
lots of love
Am so sorry you've suffered with so many side-effects on Tax, you seemed to me to be Wonder Woman on FEC. Like Seabird says, after more FEC you will have done a complete course of chemo and in lots of areas of the country 6xFEC is pretty much the norm.
I am about five weeks after my final Tax and this week is the first week for ages I haven't felt poorly, it really does take it out of you and if you're unlucky enough to get severe side effects it must be so hard to cope.
Sending you lots of love and hope your two FEC's go really smoothly,
Love Louisa xxx
Good luck at the hospital this morning Margaret, and with getting your prosthesis fitted. Will probably feel a bit weird to start with (people are often amazed how heavy they are), but once you are used to it you will hopefully feel a lot more comfortable. Good luck with going back to work, just be careful not to over do things, I should think you need a period of convalescence, not to mention another stab at a holiday.... Sarah xx
Thanks everyone - It's not the outcome I wanted really - but as you all say I did suffer dreadfully with it, and no, I don't want permanent side effects from it - I am hoping to get some quality of life after all this crap is finished. Just one for fec to go - then Hereptin. At least I will hopefully be able to get back to work earlier than planned - my contract (it's fixed term) runs out on 13th August. I want to get back so that either a) they will consider extending the contract or b) if they don't I will be at least looking for a new job having just been working, rather than being on sick leave !
Thank you for all your kind words - I'm kinda coming to terms with it this morning. Have to go back to hosp today to at long last get fitted with prothesis (it is only after all 6 months since my op!) - and to get a g-csf injection - yuk.
take care all
Hi Margaret - My goodness, you must feel all over the place. But you were SO ILL on taxotere, it was dreadful to read about it, let alone go through it. Main thing is that you will have had a full course of chemo by having more FEC, I don't think the difference in effect is all that massive, lots of people do just have 6 FEC. What's that expression - don't throw the baby out with the bath water, and Margaret, you were suffering dreadful side effects, so I guess this is not all that surprising. Hopefully you will be able to take a huge sigh of relief, get through to the end of FEC and start to get some real quality back in your life again. Thinking of you lots. Love Sarah xx
i am so sorry it's like this
so sorry you've had to stop as apart from anything else it must be totally disorientating - it's bad enough when a teratment is postponed (happened to me twice so far)
you must need to make a HUGE mental adjustment
in fact - I'm surprised they don't have a special section for this after "after treatment has finished" something like "if your treatment is stopped" - it must happen quite often
I have to say that deliberately disbaling you wouldn't exactly be a solution would it? I wouldn't opt for that!
if you are feeling totaly frustrated it might be an idea to take it out on the woodwork!
lots of love
will be thinking of you
PS have the feeling i may be in the same boat - time will tell - and i 'm triple negative so no tamoxifen for me!
We were on the fec board together - then you went onto rads and the tax.
I also had to stop my tax on 2nd dose - different reason to you though - I had a massive allergic reaction to the damned stuff. My onc said there was no point killing me in the process the idea was to kill the cancer cells not me!!!! Have to agree - so they put me on cmf - 2 doses so in total I had 6 chemos. I too was worried - but have come to terms with it. Only have 2 weeks or rads left - then 5 years tamoxifen.
I really hope you feel better soon.
Please take care,love
I had 3 FEC and 2 taxatore and was in hospital 3 times with the latter!!! I am not getting my final tax!!!! Anyway I had only .05 of a white blood cell the last time I think it pretty well killed everything off. I am starting radiotherapy on monday so here we go again! Hope you are feeling cheerier.
Hi all, following on from my 'Taxotere here I come...' thread - it's now a case of bye bye taxotere.
Went for my second one today, and had to see onc first. Onc informed me that under current health board protocols the side effects I suffered after Tax No 1 were so severe that my treatment has to be stopped. She said that continuing with it would almost certainly leave me with permanent disablement to my feet and hands which was unacceptable.
So,I'm back on fec now - but can ony have another 2, (had 3 tax left), as I've already had 4 and 6 is the max. So on the upside, the next one is the last one.
Not sure how I feel about this as I know how effective Tax is supposed to be - at the same time I would prefer some quality of life after all this sh*te and that's certainly not something I've had for the last 3 weeks !!