NO MORE CHEMIO ?????

Hi there one and all
Well I have come to a pont where I’m not sure what to do so need ideas please .
BC + liver mets in 2002 (so I am now in my 7th year so there is hope for you all )then bone mets and lung mets in sep 07.
I had Arimidex for 5 yrs - tamoxifen which didnt work - taxotere which didnt work then xeloda which gave me terrible side effect and had to come off of it and now I am just (excuse me) pissed off.
I told the specialist that I couldnt take another chemio and that I needed a rest and although she wasnt happy she agreed to 3 months on Femera.

I would like to know if anyone has stopped treatment after some years as I now need QUALITY - me being able to work part time an enjoying life - and not QUANTITY where I cant work, look like a coconut, and am so tired that I cant do anything .My hubby is very understanding but even he is a bit fed up with me saying " sorry I cant do it "

I have been possitive for over 6 yrs and have always accepted the treatment thrown at me (plus leukeamia in 2004) So I feel that I have done my best and just need a rest now.
Your ideas on the matter would be great
Luv jANE

Hi Jane,

Sorry I cant help you as I was dx with bc july 07 and more recently with extensive liver mets (Im having a v.hard time dealing with it as Im only 35 married with 2 young kids)- and I know this annoys some people!!! But I just wanted to say thankyou! It is encouraging to see that you are in your seventh year! I am sick of hearing about stats and not long etc… I want to be positive - I need that drive! And seeing your thread has given me that little extra boost.

I hope that some one comes on soon and helps you with your query!!

Hugs
Mel
xx

jane

yes thanks for posting , it does give us newbies out there some hope.

You are in charge really (my onc keeps saying its about you and how you feel) - you have done so much to get this far- it seems totally reasonable what you say, you can always change your mind tomorrow, so I think if you want a break and your onc agreed, thats great, it makes perfect sense, if you change your mind in a months time- well thats a month away,.

SO good luck with it,

Mel how could people be annoyed ?!

best to both o you,
cathy

Great to hear your so far down the road and have been living with secondaries since 2002. Do you want to stop chemo/treatment for a period of time in your onc is okay with it or do you want to stop it for good, if it’s the latter i would think seriously about the consequences of that. If you still want to go ahead after that then it’s your body and your mind and ultimately up to you, but it could just be that your going through a rough patch and feeling down and quite rightly pi**ed off and once you get that out your system you will want to keep on fighting this horrible with disease with anything and everything you can.

I have good days and bad days, I’m 38, married with 2 girls aged 9 and 6. Today I went and bought my husband a watch for his 40th birthday which is at the end of the month. I had to write what to b engraved on the back of it on a peice of paper because I couldn’t bring myself to tell the salesmans. I then had to ask my mum to speak to the salesman about it because if I had said what I wanted engraved on it I would have started crying. My Mum done it for
me but it only meant it was her in the shop crying instead of me! It wasn’t anything really morbid, in fact it said Forever Yours, All My Love, Diane xx. It just really upset me, because I may not be here to celebrate his next big birthday!

We had already booked a party before I found out I had secondaries, we decided to make a final decision as to whether the party would go ahead or not after I had my meeting with my Onc to see if the taxotere was working or not (after 3 doses). Fortunately it’s doing it’s job so the party is going ahead, however I know I will find it very difficult because it will be the first time I will have seen a lot of friends/relatives since being diagnosed but I am determined that it will be a 40th party that should be celebrated and not a night to get morbid and down (I’ve had plenty of them)

My husband really wanted this party before we were told the news about me so, although I only need to say the word and he would cancel, it is really important to me that he gets to have things in his life that he wanted and to look forward to something positive. In some ways it’s more important that I’m there to watch him enjoy his 40th than it was prior to my diagnosis.

In saying that had the onc gave me bad news then with all the will in the world I would not have been able to cope with the party, I know that.

Sorry I wnet off on a rant! Must have needed to get that little lot of my chest eh

Diane

xx

Hi Jane

Good to see that you have done 7 years with liver mets. That sounds really encouraging. I was dx with bone mets in 2006 and a CT scan has shown that I now have 3 spots on my liver. The Onc treated the bone mets with Arimidex and Bonefos bisphonates but now he wants to start me on 6 cycles of FEC. Have never had chemo before as only had tamoxifen when dx originally in 1993 so am feeling nervous. I wondered if your Onc has tried all the hormonals what about exemestane ( not sure if I have spelt it correctly)
My surgeon had a theory that all the treatments should be given in rotation and you go back to what you started with. not sure if any oncs think like that but please don’t give up the fight after all this time I’m sure there is another treatment out there that will suit you.

Take care

Barbara x

Hi Jane

You have been through such a lot over the last 7 years and I’d say if you feel like taking a rest from chemo do it and enjoy the chemo free time you have.

I am in different place from you but recently thought long and hard about the whole quality v quantity thing… I was initially diagnosed with primary in 2003 and did 6xAC and 4x taxotere then. Diagnosed with regional (incurable) recurrence April 2007, did 6x xeloda and vinorilbine then 3x more xeloda. Cancer grew again so started carboplatin and gemzar in Jnuary…supposed to be carbo plus gemzar Day 1 and then gemzar Day 8. By the 4th cycle I was just exhausted all the time and decided I couldn’t do the Day 8 so have just done Day 1 since then, massively improving my feeling well time (cycle 6 tomorrow). I’ve decided whatever that I’m coming off chemo for summer (clinically cancer still there in neck, chest wall). Due a scan soon…weekly taxol probably my next option and I feel whatever scan shows I will take a chemo break. (tirp neg. so no hormonal options.)

I don’t use the language of fighting about myself…I’m not very good at being ill…who is? but I reckon I’m definitely on the wimp side of stoicism. I know my views/feelings may change, but for me it feels right for the future to take lesser treatments even if time is shaved off my life…maybe easy for me to say this cause I’m 59 and don’t ahve children (younger and and with children think I’d feel differently.)

Anyway Jane I really feel I know what you are talking about in saying you want quality not quantity. Saying no to more aggressive tretament may be just right for you now.

Today I was out in with friends in the sunshine and I didn’t care about my wig, my prosthesis or my beige lymphoedema sleeve…all that mattered was that I felt well, not b*** exhausted as I have so much of the past year.

very best wishes

Jane

My onc really believes in quality of life over how much chemo you want/need. I can understand your position - I’ve been having continuous treatment for 3 yrs now but I tend to feel better on chemo than off so at present feel the opposite to you!!! However, If I ever felt as bad as i did on taxotere then I would definately opt for no more chemo and my husband is in agreement with that even though I have 3 children under 11 and it could mean my life is cut short. Quality is so very important.
It is your body and only and your onc know what is likely to happen if you stop having chemo now. You need to do what is right for you and enjoy yourself now. Maybe in a few months you may feel chemo is the right option but you may not. Enjoy yourself for now as long as you are fully aware of consequences - informed choice, I suppose is a better phrase, then have a break.
Hope you have a good summer.
Kate

Hi jANE

You’ve had such a hard slog over the last few years – not only BC mets, but leukemia as well to deal with, not to mention an onc that doesn’t seem to be listening to you – more than enough to make you feel p***ed off! As others have said, no one is better placed to decide what to do next than you – and it sounds like you’d be giving yourself a real boost by having a bit of a break from further chemo, which is the treatment that is hardest on us. Femara (and exemestane/Aromasin, if you haven’t tried it yet) are so much easier on our systems than most chemos, so you should be feeling a lot more able to live your life as you want over the next three months.

I like the idea of the “summer holiday from chemo” that JaneRA has opted for – you could also give yourself a few months of respite while you’re on Femara – time to regain strength, hair and ability to work, and then see how you are feeling, in yourself and about further treatments generally. And, of course, there would be nothing to prevent you from starting back on chemo at any time, if you decide that would be best for you.

I hope you find the answers you need now, and that you begin to feel less p****ed off very soon.

Marilyn x