Advice - End of Chemo 2, what next?

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Hi Everyone, I was hoping some of you may be able to give me some advice or info that will help me when I go to my Onc appt on Thursday evening.

Basically the treatment I have been on since Jan is no longer reducing tumours, the last scan showed ‘stable’ but I have a new swelling on my neck, just below my jaw line which has been getting very very slowly bigger over last couple of months.

Am on 21 day cycles of tax / gem day 1, followed by day 8 gem, my question is, do I quit this one now while there is still some life left in it with a hope of recycling if not the gem at least the tax given I am triple neg and taxanes are one of the best for us, or do I keep on it until it packs up completely, which could allow further spread.

I really don’t know where to go from here. When the carboplatin didn’t work at all for 3 cycles it was a no brainer to change, but this is the first option that has slowly shown signs of not working so well anymore.

They is also talk of having a break, I don’t want a break, I am coping with the chemo, I am working full time except day of treatment, I am doing the things I want to do in life, albiet getting slower and more difficult. I am scared if I have a break it was be off elsewhere in my body, when currently it is ‘only’ in my lymph system.

Another query I have is about rads, I have had none for the supraclavicular tumour, the one higher up on my neck is bothering me now, can I ask for rads to this or is the risk of damaging my throat to great. Why can’t they cut out the ones up there, get rid so stop them getting worse, surely there is less risk with that than letting them press slowly against my throat to strangle me or spread out.

God this is awful, sorry for feeling so sorry for myself and being a wimp but I am so bl*** scared of where I go next, even though I am still very very lucky to be relatively good despite the cancer and the treatments.

Thanks for listening, and any advise would be very very gratefully received.

Best wishes to you all
Nikki

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Hi Nikki,

I know I am not in the same boat as you (er+, though hormonals don’t even touch the sides…) but I have been on gem since January (or Feb - forget which). I had my last day 8 dose last Friday in order to give my body a rest. I am hoping that I may be able to go back to it in the future - that is unless this Saturdays scan shows different. Any time that I have had a chemo break in the last four years, I have had progression. My onc has put me on Aromasin to tide me over, which I doubt will do anything - but does leave me feeling slightly less unprotected. I have to say that I do feel in need of a break from this chemo now but I do feel scared at the prospect. My blood results were getting slightly worse each month and I am starting to get lymphodema in my arms, legs and face. When they suggest a break, for how long are they talking? And yes, you must ask about the possibility or not of rads.

My onc is keen on a chemo which is not much used, but he reckons it is underestimated. He has suggested I try metronomic (continuous low dose) cyclophosphamide which I think I will do. I have read up on it and there are various trials going on in the States and Musa Meyer on bcmets.org reported some interesting findings around its use.

Good Luck with your appointment tomorrow, take care,

Jenny x

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Goodness Nikki you’re certainly not a ‘wimp’. You are in a very scary place.

As you know I have a similar story of cancerous nodes in my chest wall, neck, etc. First of all about rads and surgery: I have repeatedly been told that rads not possible because that field in my neck had radiotherapy during my primary treatment and it is dangerous to irradiate the same area again. I also have weeping skin mets and last time I saw oncologist he did say I might be suitable for a very low dose of rads to dry these out as a palliative measure.

I’ve also been told surgery not possible because I have too many sites of tumour and it would impossible to remove it all without life threatening damage. As well as tumour in my nodes I have cancerous areas wrapping themselves round muscle.

The chemo options are difficult too. I think oncologists assume we want chemo breaks…and in my case this is absolutely the case…but not for everyone and I think you should make this clear to your oncologist tonight. Taxnaes don’t necessarily work well on triple ngegative tumours. Taxotere worked well for me, but taxol not at all. My own experience of chemotherpay is that a drug will work for say 3 cycles and then stop working.

I have found that psychologically I’ve had to accept that chemo isn’t going to work. I intended in March to stop all treatment but then got severe pain from tumours and so am trying caelyx for pain relief…2 cycles so far.

I hope your appointememt goes well tonight…its pretty shit having so few options…and watching the tumours grow.

Jane xx

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Hi Jenny, thanks for repling.

See that is my quandry, I don’t feel like I need a rest and that if I did have one, my fear is the disease would continue to march on regardless through my lymph system ultimately making my QOL worse.

On the other hand, am I actually shortening my life by continuing to use chemo constantly and not taking breaks, which would extend the total time I am here, although maybe with worse progression.

My bloods are keeping fine, nuelasta sees to that, ok I feel rubbish a fair bit but it has become the norm. I am coping though and getting on with doing things I want to do for now.

I just don’t know what to do for the best.

Thanks though, writing it all out like this helps me process the options.

Best wishes to you, hope that the option your onc is discussing works out for you.

Nikki xx

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Hi Jane, I cartainly feel like a wimp!!! :slight_smile:

The new lump up by my jaw is worrying me sick now, the other nodes in the supraclavicular (sc) area don’t seem to have grown any really so why this new area I really don’t know. It’s one of my quesions for tonight.

My rads didn’t cover where the neck tumours are, so I really don’t understand why they wouldn’t give me a blast to contain what is there, another question to ask! Glad they are going to do something about your skin mets Jane, hopefully that will knock them back a bit.

I did ask about surgery to the sc nodes, but was told no as they are in the middle of the lymph system they can’t be cut out. The ones higher up my neck are on the end of the system though why can’t they be got rid off, (another question!)

Chemo has been working for me, for the first 6 cycles we got significant shrinkage, but now it’s growing again, will se what they say tonight then!

Thanks for writing Jane, as I posted to Jenny, typing it all out as a discussion really helps me to get things straight in my head

Are you getting any response from the Caelyx? Also really hope your pain is getting under better control.

Nikki xx

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Hi Nikki

Well lets be wimps together…

I’ve also recently found a lump in my neck which I hadn’t noticed before though think (hope) it might be an old one.

Its funny…though in general I’m an ‘information seeker’ I don’t push for lots more information re rads or surgery. I’m simply prepared to accept the voice which says no rads, no surgery…it was what man at Marsden said so thats a comfort.

I’m still in really bad pain. Its a burning shooting pain which comes on when I move in general, or walk…in particular. Can be very bad at night. (I’ve just been out (for a blood test…don’t seem to go anywhere that isn’t a hospital…) and was in tears with the pain by time I got back…just sitting in the car.

Cealyx doesn’t seem to be doing anything but as I’m not getting side effects either, who knows??..

Good luck tonight Nikki

Jane xxx

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Hi Jane, ok wimps united!!!

I do wonder about the lumps, were they there, am I imagining things, is it really a lump or an infection, drive myself crazy (er) sometimes.

The pain sounds awful, I so wish they could find a way to control it for you, everyone seems so reassuring about controlling the pain when it’s been discussed before at clinic, but reading first hand accounts here proves it’s just not always the case for everyone. No side effects is good, hope it also gives some shrinkage and takes the pressure off those nerves for you.

Seen the Onc, she gave me 3 choices, carry on as is, go to see about PARP trails, take a chemo break. I chose option number 1. She is seems comfortable that this regime could continue to hold things as stable for now and thinks as I am coping so well and am not having any problems with bloods, liver or kidney function etc I should keep on it. I guess it makes sense, I certainly don’t want a break and trails are so hit and miss right now.

So, onwards and downwards. Still worried about the neck lump, but guess there is nothing to do with it yet unless / until it starts to interfere with my throat. Maybe it’s just an infection (year right!)

Thanks both for your support, much appreciated.

Nikki

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Hi Nikki,

Well as long as your bloods etc. are OK and you are OK with the decision, this sounds a fine course of action. Hope you are feeling at least short-term reassurance that you can carry on as is.

Jenny
x

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Thanks Jenny, not sure there is a whole lot of choice but to trust. I am positive things are growing again, but will stick it out another cycle or 3 and see how it goes, unless I have anything drastic come up in the meantime.

Just scared of it all I guess.

Nikki