Back on chemo - so soon!

I don’t post very often but do get support from reading others on the forums - need a few wise words right now.
I was diagnosed with secondaries in Oct 08 and went straight onto chemo, finished in March. Have just got properly back to work, ditched the wig, went to hospital yesterday and it’s back to square one! Liver mets grown again so back on Chemo. I have been on Arimidex in the meantime but obviously that hasn’t held anything. So just 4 months break from chemo - feel more devastated now than last Oct as feel like I did everything that was advised, I know how awful it was and it hasn’t worked. Doctor still upbeat - eg early days, lots to try etc etc but how do you all cope with chemo so regularly??? It all seems such a lottery - doctors don’t really know what will work so just try something else and see what happens!
Sorry for rant, but I needed that!!! Any wise words definately gratefully received.
Alison

Hi Alison, so sorry that you are being advised to go back on chemo again. Have you tried the other hormonals apart from Arimidex. Your situation is different from mine, as i have lung mets, which have progressed very slightly on Arimidex and herceptin over the last few months, but as i have very few symptoms, and progression is only minimal, decided with my oncologist to wait until after he school holidays, have another scan and thn decide on chemo. I wander how much your liver mets have progressed and if they are casusing you any problems. It’s very difficult getting a balance between treatment and quality of life, and I wander if you need to discuss this further with your oncologist.
best wishes, Nicky

Hi Alison
I can’t really help but just wanted to offer my support. I have bone mets which are currently stable after chemo finished last year. I really don’t know how I would cope if I had to go back onto chemo as soon as you have so you really must be fed up and p*ssed off. I hope the chemo you are going to get hasn’t too many side effects, I know some of them don’t, and maybe you won’t lose your hair again? Wishing you all the best and good results when you next get them.
Nicky x (another one!)

Alison I can understand how pissed off you are, I had just a nine month gap between my initial chemo and my current one, (just about to have 2nd Taxotere of 6) In between I had Arimidex, one scan showed a response the next progression, and then Tamoxifen after which the scan showed significant growth. It is hard when treatments fail, two back to back lots of progression left me reeling for a while. I was told that after this chemo the profile of my cancer might have changed and so they would try another hormone treatment after this, you should ask whether this is the case for you too.

I guess the only way to get through is to work out when your good days will be and try to plan in some treats for yourself however small.

Do you know what chemo they are suggesting?

Fiona

Hi Alison,
sorry you are having to go back on the chemo it is really frustrating when we do the treatment and then hope for a decent break just to be let down. I was hoping for a chemo free summer but had to go bck on it in June only finished it in the March so I can understand how you feel.
Mine is in the liver I was er+ at primary but er- at sec diagnoses. I am due to start a new treatment tomorrow if my bloods have improved it will be vinerolbine tablets for me. Do you know which one you will be starting I had capecitabine for nearly 2 years this was also a tablet you don’t lose your hair with this one you take it twice a day 12 hours apart. It for me was by far the easiest to deal with.
Wishing you well with your new chemo and don’t worry about having a good old moan on here we all do from time to time.
Thinking of you.
Love Debsxxx

Hi Alison, I know just how you feel. I had taxotere once I was diagnosed with liver mets, and after just seven months (three and a half on chemo and three and a half off) I had to move onto another chemo.

The one I moved onto was CApecitabine(also known as xeloda). It is a much easier chemo than the others and I have, till now, led an almost normal life. I have heard of somebody who has been on it for four years - and it does tend to be assoicated with long term remission.

But facing up to the prospect of a future of back to back chemos is really depressing, I know, and does take some getting used to.

Deirdre

Hi Alison (and everyone else)

So sorry to hear that you’ve had some progression in your liver; when I had liver met progression after two years on Arimidex & Xeloda (& Bondronat for my bone mets), my onc changed my AI to Aromasin (exemestane) instead of changing my chemo, which did the trick. I’ve been stable in my liver for almost four years since then, and NED in my liver for the last 12 months. So maybe talk to your onc about a change of AI instead of re-starting chemo? As for Xeloda, I’ve been on it nearly six years, now on 1000mg x twice a day, two weeks on & one week off. Yes, my feet are a bit sore, and I get a bit tired, but for most of us who have tried this chemo, it’s easier on us than IV chemo treatments: no needles, no hair loss, relatively few/short hospital appointments, etc.

Hope that whatever treatment comes next for you, that it works well and is gentle.

Marilyn x

Thanks everyone for you encouragement and suggestions - what I realise is that I probably didn’t ask enough questions on Wed about options. Even though I am a confident assertive woman everywhere else in life, as soon as I get in the consulting room I seem to revert to ‘trusting child’ mode!!
I did Tax first time and now they are saying FEC but the oral chemo’s sound worth considering - unless they want to reduce the mets again and then start with something else stabilise it? I am seeing the BC nurse at the unit on Monday so will ask her advice and perhaps to see the Onc again so I can understand why IV chemo rather than anything else.
Isn’t it amazing how much treatment we all somehow manage to cope with!!!
Love
alison

Hi Alison

Yes it is incredible how much chemotherapy we put up with…and often for very unclear or unknown benefits. Is it possible for you to get another meeting with your oncologist to discuss why this choice of chemotherapy at this time? Remember you are in control here and it may be that you want to wait another month or two before resuming chemo. To do that is unlikly to alter your prognosis but it might give you a better summer.

best wishes

Jahe

Hi Everyone - just thought I would update you as all your responses gave me some idea of what to askwhen I saw the BC nurse on Monday. Firstly she showed me the report on my last scan which showed ‘significant’ progression in the liver and so made me feel better about having more chemo - clearly need So t a bit of zapping to reduce them again! She was less clear about the '‘what next’ question as had Tamoxifen for 5 years after primary diagosis which obviously stopped working at some point as started to have bone pains which ultimately were diagosed as bone mets (took 10 months though!) and Arimidex hasn’t worked at all. THat is a question for the Onc when I see him next.
Going thru chemo for the second time I have a much clearer idea of what I want and don’t want so hopefully will manage it better eg going to try and work a small amount of hours, going to get chatty friends to come to chemo with me rather than hubby who does the crossword!! So taking control in some small ways!
Best Wishes
Alison

Hi Alison,

Sorry you are going to have to go through chemo again.
I did find the second time easier I was more prepared for the smaller stuff that gets you down but its still hard.

Please take it easy and be kind to yourself
best wishes
Tess.x

hi alison i was diagnosed same time as you and was on taxol until march - same sort of deal- most mets stable but one liver met (out of multiples) has over doubled on size - hard to go back on chemo - but hope this works well for you …and me! I just have no idea which chemo is chosen and why …take care jaynex

Hello Tess and Jayne

Thanks for your messages and kind wishes. My chemo starts on Wed and i am flat out at work Monday and Tuesday making sure all in in good order so not really givn myself much time to get my head round it. I do feel more in control this time but obviously worried whether it will do the trick!

Jayne - when do you start and what chemo have they ‘chosen’ this time? All very random it seems to me but we have to trust they are making the right decisions otherwise it would be impossible to cope with.
Love Alison

Hi Alison - well i was to start xeolda but onc phoned me friday to say they had changed m their minds -!!! seems like they want to give herceptain another twirl or two before starting xeolda - because he said my options will run out and as soon as i start another chemo herceptain will be withdrawn - what they are unclear about is that one in liver shows progression but most others are stable - i got the feeling they had different opinions at their meeting - so will just have to trust they have made the right decision…having said all that have heart test tomorrow and have been told my heart is stuggling on herceptain so all this could be reversed again! i find it all quite confusing - what about you alison when do you start and which one? Hope you clear things up at work and it all goes well for you this week , jayne x

hi Jayne - your situation does seem very fluid indeed! In some ways it is reassuring that they have given so much thought to your treatment and your doctor is right about ‘saving’ chemo options.Hope the heart test is OK as you certaily don’t want to have to worry about that as well.
I start on Wed and it is FEC this time - the side effects leaflet looks exactly the same as Taxotere but obviously is likely to be different - willhave to see.
Amazing day at work which ended by being interviewed for local TV about a big holiday event for disabled children the Local Authority I work for had put on. Just watched programme to see what my post chemo ‘bubble hair cut’ looked like but it wasn’t on! Perhaps tomorrow!
Best Wishes
ALison

well. wishing you luck Alison -what programme - will try and cach it - hope fec is ok for you -never had that one - had heart test , which has been very borderline for me last couple of times so here’s hoping - jayne x

it is Central News based in Nottingham so only shown in the East Midlands. fingers firmly crossed for you results
Alison

Hi Alison, sorry for coming in so late to your thread, been away from the boards as I need to be periodically.

Just wanted to say that I have been in chemo constantly since Nov last year, longest gap I have had was 2 weeks off, but I have also managed to continue to work full time throughout except for the days of treatments. Of course I know this cannot last, but I am making the most of it while I can. I also understand though that everyone reacts and copes differently to chemo, even the same regimes and I am lucky to be in this situation for now.

But, it does show it can happen :slight_smile:

Best wishes for your treatments and may they be ‘doable’ as well.

Nikki

Hi Jayne,
Just wanted to say I am in such a similar situation to you, except that I have already had six cycles of Xeloda. My onc is desperately trying to “save” my chemo options.
I was (and hopefully still am) on Herceptin but am really struggling with it as it`s affecting my heart function. I am having a month off and am taking heart medication to try to help my heart to recover, so fingers crossed!!
I have lung mets and Xeloda slowed down the progression.
Good luck with your tretment plan,
Take care,
Janx

Hi Alison
I had 6 FEC for my primary diagnosis late 2006, then 8 cycles Taxotere in Dec 07 for extensive liver secondaries. I found FEC a lot more bearable to cope with - had a lot of problems on Taxotere - so I hope you find FEC more bearable too.
After Taxotere I had 5 month break but the 75% reduction it had given me hadn’t remained and the tumours were back to the original size so I had to start on Navelbine and 5FU which after 6 months showed it hadn’t worked at all! Infact I was worse off and the original tumours had grown and I’d got new large tumours as well! Great! I know of others who have had this combination and had brilliant results though, just didn’t work for me. I’d had a 6 week break while they sorted out the scans and options etc and am now on Triple M ( a combination of three chemos starting with M) - not coping very well on this, exhausted and tired all the time, considered stopping it after last cycle but scans have just shown the tumours are only showing slight growth so consultant wants me to continue as long as I can tolerate it - alternative seems so scary.
I have been on Herceptin since 2007 and although it doesn’t seem to be doing anything for the liver so far scans haven’t shown up any spread so maybe Herceptin is keeping it controlled from spreading to other areas, hope so. I’d be extremely reluctant to come off it anyway.
Sorry if I appear doom and gloom with info on my condition.
I do hope FEC goes well for you, oh my sister in law had it too and she also coped well. Fingers crossed you find it the same for you.
I understand how awful it is going from one chemo to another, but it’s amazing how your body repairs itself each time. It’s just the coping with the psychological side and the side effects too but somehow we seem to get strength and courage to carry on. I always have a drug called Emend anti-sickness drug (relatively new I think) and it works wonders - highly recommend it.
Hope everything goes well for you.
Take care.
Carol xxx