For people living with incurable cancer only
This group is aimed only at people who have had an incurable diagnosis themselves, as we have had feedback that they would like a safe space to share their feelings openly among themselves.
If you have a loved one with incurable cancer, you are very welcome on the Online Community as a whole, but we would ask that you respect the wishes of people with incurable cancer and not post in this particular group. Instead, you will find really good support in the Carers group, the relevant cancer type group and the supporting someone with incurable cancer group.
Hi, I've been well on the oral chemo capecitabine for about 9 months. I suspect at tomorrow's oncology meeting or the one after a scan on 1st October, that the efficacy of thus drug will be discussed as my cancer marker is now up near 200 (the last scan didn't show up in increased tumour sizes but it will). The next option is weekly intravenous chemo.
A palliative nurse friend of mine today reminded me that the choice for chemo is mine. That the oncologists will suggest and give effects, but that I have a choice. She said that in some cases she'd seen people's quality of life really decrease on an intravenous chemo.
I wondered what your experiences might be of going from say capecitabine with no hair loss, but neoropathy and fatigue (manageable) and life being still mostly fully engaged in, to say any of the palliative intravenous chemos. I'd love any insights about quality of life and chemo.
Thanks so much. Xx
this is a tricky thing and one I think I may face too - I have currently just started a clinical trial but if it does not work my option is IV chemo or stop treatment, my cancer is notoriously chemo resistant so I have been looking ahead (bad, never look ahead!) and giving it some thought.
i think There is no real answer because all choices like this are so personal but things I would think about:
- what kind of chemo is being offered and the timing, for example weekly taxol is supposed to be easier to tolerate than 3 weekly
- remember you can start it, then stop, it’s not a failure!
- how likely is your type of cancer to respond
- are there other options like a clinical trial?
- if you don’t have it, how long (this is a very personal question and not everyone wants to ask this and that’s ok too)
- if you stop treatment who cares for you (is there good palliative care accessible)
I had carboplatin & taxol last year for 6 cycles and it was tough but as everyone says “doable” . But the fatigue by the end was significant and I found it took a real toll emotionally- I felt I lost my sense of self, however this was also after a lot of surgery too. My friend had the same regime and bounced through it, so everyone is different and each chemo is too.
It’s a really personal decision to make as everyone wants you to keep going but I think thinking it through and speaking to palliative care and taking your time, is all ok too.
Wishing you all the very best, Heather xxxx
ps I suspect when the time comes I will take the chemo but stop if I lose myself again!
I had IV chemo and it was ok. Not easy, but it has worked quite well. It was definitely worth it for me. You can always stop treatment if it doesn't suit you. Quality of life is important
Hope you can get some answers and find your way through
Good luck x
This is a conundrum I’m going to be facing soon too - and one that I talked about with my daughter just this week. She brought it up, I should add.
I have had IV chemo three times now. The first was carbo taxol in 2014 with six infusions at three weekly intervals. It came with hair loss, steroids (weight gain and general madness), peripheral neuropathy in my feet, fatigue, infection risk. I also felt I “lost myself” and ended up in hospital at the end with an internal abscess. It’s not something I would want to repeat, either the abscess or the carbo taxol.
In 2018 I had Caelyx and carboplatin and that wasn’t so bad. The Caelyx is a formulation where the chemo drug molecules are coated in fat so they dissolve slower, reducing the side effects. I had hair thinning rather than total hair loss and overall less severe side effects than the previous time. I had it once every four weeks and managed five of the six scheduled doses before the cancer progressed. This means I’m now platinum resistant, ruling out one of the mainstays of treatment for the particular cancer that I have.
This year I had six months of taxol combined with a trial drug that I took orally. I had IV chemo once a week for three weeks then a week off. It did rather take over my life but again wasn’t as bad as the carbo taxol. Most of my hair came out but the steroid doses were lower. The fatigue got progressively worse as time went on. I was mighty glad when it was over.
Each time, I’ve finished the chemo with less cancer in my body than at the start. Each time, I’ve had significant side effects that have left me weaker. Each round has left me feeling like a battle has been waged inside my body and I swear “never again”. But then the cancer grows and I find myself thinking “once more unto the breach, dear friends” and off we go.
So when is it time to say stop? The discussion I had with my daughter was about this choice. I’m looking at entering another trial or possibly doing another lot of weekly taxol. There are no other options. She wanted to know if I’d go for the taxol if the trials option doesn’t work out, especially given the limited chances of the taxol being effective - around 20-30% said my consultant when we last talked about it before I started this year’s trial.
I told my daughter that right now I just don’t know. The option of doing nothing has only one outcome - the cancer will grow and I’ll die. I don’t know how long that would take or what quality of life I would have. The option of doing the chemo has known side effects and the chance of holding the cancer a little while longer.
I think that if it comes to making this choice in the next few weeks (I see my consultant on September 26 to find out about which trial I might or might not be eligible for) I’ll probably say yes. I am relatively well, I know what the side effects are and how best to manage them and who knows what other options might come up in the meantime? I know I can stop if it all gets too much.
Right now, though, I’m enjoying some time off treatment. I’ve been in active treatment for 12 of the last 18 months and it’s so good not to feel as though I’ve been poisoned. My head has cleared and I feel more like myself somehow. I wish I could have more time here in this space.
Ultimately, I think making the choice to say no is one that I will take with my consultant. I know her pretty well and while I don’t think she’d ever advise me over what choice to make, I know that she will be clear over whether she thinks I will benefit from a particular course of action. I think my physical condition will play a large part in that decision.
How did your meeting go? Have you had to make a choice yet?
What is a community champ?
Thank you for replying Heather, Flowerlady and Daloni,
And thank you for your thoughtful answers. Paclitaxel is the drug (Taxol I've realised) and I'm grateful for your shared experiences. I met today with my oncologist and shared my concerns. I meant to ask her Heather the question "if I don't, how long", but perhaps I'll ask her via e-mail as I'm always aware that my husband is in the room with me and he may not actually want the answer to that question. I'd like to know though as I consider the options. Three weeks ago I had three weeks off the oral chemo and like you Daloni gee I felt normal again. I hadn't realised how tired I was feeling, even though I am still managing to get out and about in the mornings usually, and then it's like fatigue comes in like a fog about 3 o'clock. It was that three weeks that make me wonder, what do I consider to be quality of life? Is quality for me being able to have coffee with friends twice a week? Is quality sitting most of the day tired? Is quality being able to go away still for a long weekend? Is quality being able to engage in meaningful writing? And how would chemo effect these things? Is nausea two out of seven worth five days of relative days out? I like to sit at the ocean or have coffee or visit our children. Or will it mean nausea and tiredness and staying home to be near a toilet? I realised I can't really answer these questions until I try the chemo because everyone's response and experience, as you said FlowerLady, is different. We've brought the scan forward to next Wednesday. I've decided that I will more than likely try Paclitaxol - possibly at a lower starting dose as I mobilise via a wheelchair and that has to be part of my considerations of management - and see how I tolerate it. My oncologist said the same Heather that I can go off it at any time, and after two months I'm going to know if it's working in any case. I'd just like a magic mirror - wouldn't we - to know whether I'm actually adding time to my life for my husband and my children and grandchild, or whether I'm going to waste days feeling yuk when I feel so well off the chemo. Daloni, I was touched by your sentence "I wish I could have more time here in this space". I wish that for you too. Truly. And for all of us. It's a sobering day today. Reality of a terminal cancer diagnosis looking at me squarely in the face. I'm grateful for the time I've had thus far as it's 10 months longer than first advised, but my the decisions we have to look in the eye and come to terms with.
I think your question of "what is quality of life?" goes to the heart. It all depends on where you're standing. I was talking to a friend last week about her elderly parents. Who wants to be 84, she asked. A healthy 83 year old is the answer.
Quality of life changes over time. What I now consider a good day would not have qualified as such just a few years ago. I feel like my horizons are constantly moving, getting closer, and each time I struggle to accept that this is how life is now but each time I find that life goes on and there are new things to enjoy, new things to learn, new ways to do the things I want to do.
And as for a magic mirror, yes we would all like one of those!
The question of "how long have I got if I say no to chemo?" is a hard one. Perhaps another question might be "how long could I reasonably delay having chemo given that I feel so well now?". I had an oncologist explain to me that the cancer usually grows quite slowly for a time. Then suddenly it will take off and overwhelm your body. Her job, as she saw it, was to keep the cancer damped down and delay that explosive growth while balancing the side effects of the chemo. A tricky high wire act.
I do hope you feel at peace with your decision. Maybe it is not days wasted feeling yuck, but days banked as the price for the good days?
Lots of love
Thank you Daloni for engaging so heartfully.
I hadn't thought of the question how long could I reasonably delay having chemo given that I feel so well now? I hadn't thought to ask my oncologist how long she thought I could have off the current chemo before starting the new regime. Thank you for the perspective.
I'm thinking as I type that her answer will depend I guess on how much the cancer has grown since the last scan that showed no increase in June. Inside myself I have been quietly wondering these past few weeks if it has actually "exploded" simply because my CA 153 marker is now over 400. At last count three weeks ago it was just over 200.
I have peace, mostly, with the journey, as I have grown to register my powerless over life, and for me that my job is to go with the river I am in not fight against it. This works for me, mostly. But sitting here tonight I feel very overwhelmed with reality and the journey at hand.
Thank you to everyone for such a thoughtful discussion, it has really helped me. We have such difficult decisions to make, often we when feel at our most fragile. I liked the river analogy - a Columbian friend said to me “heather you are riding with the wind.....just hold on” I liked that too!
Robyn, the very best of luck with your decision.....a pause before starting might be a nice thing to do, if you feel well. I have the exploding feeling too, as I wonder what is happening inside. I hope your oncologist is someone you trust and who can guide you through this, I am lucky with mine, she is very young but understands these are tough decisions to make and will help me when the time comes.
wishing everyone a good day and peace in all our hearts xxxx
It’s always good to bear in mind that you have choices even if the decisions are very difficult. I know I can’t control the cancer but I do have a modicum of control over the treatment I accept. When things are difficult I feel less powerless if I know that I’ve chosen this path and I’m not having it forced on me by others. Even my wonderful husband always reminds me that the choice is mine.
I’m glad you’ve managed to find some peace Robyn but I can understand how difficult it is at times. Thank you for sharing your feelings. Much love. Jx
And my thanks too for this thoughtful and thought provoking discussion. It really has helped me as I work through the decisions I have to make. I wish none of us had to face this but we do and we might as well make a good job of it
love to you all
I've just caught up with this thread, and it's really struck a chord. Every single post.
I had 'aggressive' IV chemo 3 years ago and was stable for about a year. Then when my cancer exploded my Oncologist didn't start chemo straight away, because I felt so well. I had almost another year until the cancer progressed again and then started oral chemo. Apparently it's sometimes called 'chemo light' but the side effect were awful and it flattened me. It was stopped briefly after 2 months because of serious complications, and I'm now on half the dose. The side effects are persistent but manageable, but more importantly, I've got my spark back. Then a life threatening complication 2 months ago made me question what exactly we were doing here, and at what price.
I think I've been reasonably good at rolling with the punches so far, and my idea of quality of life has had to change along side that.
Knowing that days can be broken down into good mornings/afternoons/evenings helped! There are not so many good days as before. I love the idea of days of feeling yuck are banked for the price of good ones.
And now the indications are that this treatment is no longer working. I'm lucky enough to have a Consultant who puts quality of life very high on the list, but doesn't feel we're at the end of the road. It has been incredibly helpful to get some perspective by reading all these posts, thank you all for your honesty.
My niece is getting married in March, the first wedding in the younger generation, so whatever it takes.
There will be sadness, there will be grief, but by God there will be dancing! xx
Quality of life - what a difficult conversation it is. It's hard when there are days of great health followed by days of fatigue and sickness. We probably all have our own thresholds don't we for measuring quality. My oncologist has always stressed quality. Thanks for this thread - it's really helpful to hear everyone's view
I am on round 2 of 4 infusion & tablets regime at the moment. I feel pretty rubbish and think to myself that I don’t want to be doing this for the rest of my life.
But when I am off the treatment (before this treatment I had 9 months of nothing as I was asymtomatic) I very quickly forget how bad it was. During the good times I think I would always say yes to whatever treatment is offered.
I am by no means an expert, certainly not compared to lots of you awesome people who have been through so many treatments and side effects. I am relatively new to this so maybe I will change my mind about it.
I have said to a few close friends that I would always choose quality over quantity but I can’t help feeling I owe it to everyone who loves and needs me to do whatever it takes to live for them.
I feel I would also choose quality over quantity but it’s very subjective.There was a point when I felt the treatment wasn’t worth it but between the oncology team and GP practice they sorted me out. I’m very tired at times but if I pace myself I can do most of the things I enjoy so it seems worth it. At what point does that change? I honestly don’t know but I feel (hope) I will recognise it if it happens.
I’m so grateful to you all for giving me a safe space to discuss these very difficult things. I’ve got friends who will listen but I’d rather enjoy my time with them. ️
Good morning everyone, I too am so very grateful for every person's input into this discussion. Thank you. One of the things that has resonated for me to think about, from what a few of you have said, is that you have registered that your standard of "quality" is not the same as it was, but that you've moved with that, sometimes after titrating treatment or sometimes because "quality" in your mind has shifted. It's been very helpful to consider quality in light of your comments. I asked my husband what he considered quality of life with regard to having me around. He said that having me around "present" was quality. So quality for him had to do with being with my family in meaningful ways - conversations, being able to be interested in others, being "with". I found this interesting because being in a wheelchair I have already compromised my "quality" of life. I don't walk on beaches or climb mountains or swim or cook, or garden. And fatigue has always been a shadowy factor. There are already so many places I don't go because of limitations. BUT I do have coffee with friends, and I do interact and am interested in others' lives, and I do have great conversations with my kids and I do engage with my grand daughter. With regards to the cancer I may need a sleep (I loved your idea Tinalay of the three parts of the day morning/afternoon/evening) in one of those but there is still quality in the others. I guess as I am writing that for me it's HOW present I can be that is the question. How non present am I prepared to be in order to be present. I'm so very grateful for all the things you've said. I can feel my mind still musing over your comments even though I haven't mentioned you by name.
Love. In bucketloads.
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: