taxotere & xeloda
taxotere & xeloda Hi all
I just need some advice from people who are going through hard times as well. On second course of tatotere and xeloda and it is a living hell. Spend all week in bed and still cant get any energy, diarrohea daily and my mouth is so qucky and appetite is going down. I cant seem to get anything to drink to quench my thirst and generally feel ill. The point is I dont think I can do this another 4 times and feel like packing it it now and just forgetting that I have bc with liver and bone mets and living out my days in denial. How long would I be around for it I stopped all treatment now? I am only 37 with 2 kids but I am not able to be a mother to them at the minute and feel I am a burden to everyone. All I do is cry! Please I would appreciate any advice.
Thanks
Lavendar
Thinking of you Hi Lavendar
Had similar experience with Taxotere an Xaloda… it is mega stuff. I spent time in bed at home and in hospital …not a pleasant memory. I lasted 2 cycles and that was me done. I went on to take Xaloda and Herceptin much more my style and a walk in the park after that combo. I have just been accepted on to a trial using Tykerb. I found it a hard desition to tell my onc. that I wanted to try something else…but is your body and you have the right to choose. I was a two years older than you when I was dx but 18 years on and 6 recurrences later I am still here manageing to keep a head of the game. Well most days!
“Don’t let the bastard grinned you down”.
Thinking of you and your family…take care xxxx Onetit
Hi Lavendar
I am also on Taxotere but not xeloda. My first dose made me really ill with dreadful mouth ulcers, constant diarrhoea, joint pains so bad that I couldn’t walk etc. Had 2nd dose last week and onc decided to reduce dose by 25% as he said I should not be quite as bad as I had been.
This time its much better with just constant tiredness but that should lift by the end of the week.
You must tell them how bad its making you as I am sure they could adjust your dose to help.
I too felt like the worlds worse mother to my 4 and I am sure their behaviour got worse on my bad week too.
Give yourself time to rest…its important and keep in touch to let us know how it goes
Take care
Cathie
Telephone support groups Hi Lavendar
You sound like you are having a difficult time, have you considered the secondary breast cancer telephone support groups.
The aim of the group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences.
Discussions cover issues such as relationships, work, money, living with uncertainty, treatment, as well as everyday life.
breastcancercare.org.uk/content.php?page_id=2387
Kind Regards
Forum Host
Breast Cancer Care
Lavendar It sounds like time to round up the troops and let all your friends and family know how you are feeling. If you are well enough to draw up a list of things people can do for you then do so - if not then nominate one of your more forceful friends to take charge and get that person to organise some help for you. I am sure that people have said ‘if there is anything i can do to help…’ - now is the time to cash that in. Your chemo is awful but very important and could get better over the cycles if you can only get through the first few.
You owe it to yourself, your family and your friends to take them up on their help and give yourself every possible chance. Should you decide to abandon Taxotere then you know that you have given it your best shot but, before you do, I have to tell you that Taxotere and Herceptin pushed my liver mets into ‘no observable sign of disease’ (and that was in 2004).
All the best whatever you decide
blondie
Hi Lavnader by Terry Hi Lavander,You may see from my posts it is my wife with the the problem.
She has been on Xeloda and taxotere for a while now and now just xeloda, yes it was a bitch so to speak but now she is on xeloda only it is better, just very very tired.
Please don’t pack in yet, muy wife is fighting so hard I need help from people like you to fight too.
xx
Hi Lavendar
I know exactly how you feel, I was due to have my 5th Taxetere last Friday, but decided I could not take any more so made appointment to see my Onc and explained how I felt. I said that If she told me it would make a big difference to my expected life span then I would continue, but she agreed with me that it was not worth the distress it was causing, so I am just continuing on Herceptin alone at present and waiting for a CT scan to reveal just what effect the 4 sessions of Taxetere have had. She explained that, if needs be, I can have some more chemo at a later date, either Taxetere or something else. So my advice to you is to speak to your Oncologist as soon as possible and continue reading this site. Just reading the advice and comments on this site has done me more good than all the chemo in the world. I feel like I am finally back in the world of the living. Before I made my decision to stop chemo, all I did was cry, so don’t worry we all understand how you feel, you are not alone.
God bless
Let us know things go
Chris
Thanks everyone Thank you all for your help. Chris funny you should say that I have spend the whole weekend crying. If things do not improve, I think I will defenitly call it a day. Due scan on 21 March so I will hang in there to I see if it is working or not.
Many thanks everyone and God Bless
Lavendar
I know how you are feeling.I lasted four courses and then gave Taxotere the flick and continued with Xeloda only.
However it pushed my extensive lymphatic and muscular mets into full remission and I have been for 4 months now.
If you can continue,maybe its worth it.
Good luck
Nicky
keep going Just wanted to say I had four cycles of Taxotere and they were the worst 3 months of my life ended in hospital twice and thought no more. My onc. arranged a scan to see how things were going and even she was amazed at how the tumors in my liver has responded to the treatment in so far as they could hardly been seen on the scan, whereas before my liver looked like the moon full of craters!!! She then decided to take me off taxotere and I am now on hormone treatment (aromasin) and Zometa. Three months later I feel really well and I will be returning to work next week. So if you can I would say try to keep going if you can tolerate it and I wish you all the luck in the world as I know how cr*p you are feeling now. Lots of love and hugs
Sheila
Hi there
noticed from your profile that your in scotland. I am too and am also young at 39. I’ve had taxotere a couple of times before my body became resistant so now I’m on xeloda on it’s own. Not sure how successful it’s being yet. Liver’s not worse but not much better either. Despite most people seeming to find Xeloda no problem my first course made me feel terrible. Really knackered and really depressed. My dose has been reduced now and not finding it so bad. I know we’ve got lots of reason’s to feel low/depressed etc but I think the drugs definately directly affect your mood. It’s worth taking this in to account. Maybe a reduced dose would make the difference.
Oh and I agree, ask for help. I find it really hard to do this but I am getting better and remind myself that half the time people really want to do something. there’s so little anyone can do most of the time so at least practical help is something
franky
Also on taxotere Hi Cathie
I hope you don’t mind if I ask you a couple of questions. But I’ve just had my 3rd lot of taxotere, first one was dreadful, but the next 2 have been ok. I get very tired for a couple of days a week after and quite bad diaoreah, bad acne and a bit of a sore mouth. I’m 45, mother to 3 children aged 7, 6 and 3 and work part-time with my husband. He keeps telling me that I’m doing too much and need to sort out some help with the children, but I don’t know who to ask for this. It’s not something we could afford to pay for, apart from the fact we live in rural shropshire and nannies and au pairs are non-existant. Unfortunately he can’t help at the moment as we’re in the process of building our own business and my secondaries arrived at a very inconvenient time!! Do you, or does anyone else out there who has small children and no energy know where to get help from?
Leanne
I also had big problems with taxotere and after 2 treatments felt I couldn’t take any more. However, like Cathie, I have had the dose reduced by 25 per cent and it has made an enormous difference, to the extent that I now feel I can carry on to the end (6). My onc says it will make very little difference to the end result.
Please ask if this could be an option before giving up entirely. Apparently it’s quite common.
Leanne
If you have secondaries then you will be entitiled to DLA at full rate. I am over 60 so I get attendance allowance at £64.50 per week. You have to apply under SPECIAL RULES which says you havent more than 6 months to live but ignore that and ask either Oncologist GP or Macmillan Nurse about it. I saw the Social Worker at my Hospital and she sorted it out for me and I received payment within 2 weeks. My Husband has Secondaries from Bowel Cancer and he gets it too.
You dont need to want help with Dressing and Care and the Form is so simple to fill in as part of it you can ignore due to Special Rules.
Good Luck
Dot xx
Hi Leanne I’m 47 with two children aged 7 & 5. I receive Disability Living Allowance, (though at a lower rate than Dot gets) I get my Child Tax Credits and any other money coming in is via my self-employed landscape gardener of a partner (and I get paid to produce our local Parish magazine). We do not have much family locally to call on for help but as my partner is self-employed, he can make his own rules to some extent and is always there to look after the childen when I need to attend hospital appointments etc. In this respect, I feel luckier than many other people tied to 9-5 jobs. We may lose money this way, but who cares, we keep the family running quite normally for now. We’ve had our mortgage paid out via a critical illness clause. As you are in the business of finance, I hope you have checked out any options like this that may be relevant to your situation. I know it is hard, but I think you must try to balance building your business with looking after your health. You are helping to run the business and your husband should perhaps look for ways to work more flexible hours in order for you both to stay on top of things. Get in touch with your local social services and ask your breast cancer/macmillan nurse for any advice they can give. Hope I don’t sound too blasé, I just feel money (while still important) should take second place to getting you through this.
Best of luck with taxotere, yuccy stuff - and do take care of yourself, first and foremost.
Jenny
xx