Chemo versus quality of life?

Hi and a very warm welcome to the online community

I can't help with your question about whether to stop treatment or not but I noticed that your post hadn't had any replies yet. Replying to you will 'bump' it to the top of the discussion list where it'll be more easily spotted.

At the end of the day, as I'm sure you know, the decision can only be yours but it would probably be a good idea to sit down with your oncologist and talk everything through so you know what you'd be dealing with and can make an informed decision.

While you're waiting for replies from the other members of the group it would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hello Cardy, I am sorry to hear that you feel so unwell with Folfirinox. My husband had gemcitabine and like you did very well on it but it stopped working very quickly. He had the same experience as you with Folfirinox. It made him very unwell and he ended up in hospital three times with infections.

As Latchbrook says, only you can decide whether to stop chemo. I had breast cancer and, while he was yet to be diagnosed with PC, my husband pointed out a book by a Glasgow GP Margaret McCartney called 'Living with Dying'. One of the issues she talks about is deciding to stop chemo when one is terminally ill. There is often pressures from others to continue with chemo because, naturally, family and friends want us all to live longer. There is pressure from within too as coming off chemo might be seen as giving up.

The problem is, and I think this is particularly so with PC, we don't really know how much longer chemo will give us or how we react. And there is a view of some people that you have to 'try everything'.

I have no words of wisdom. But, i will say this. I think, if you decide to stop chemo then that is perfectly acceptable. It is your decision. I never talked to my husband about whether he would stop and I have no idea whether the chemo gave him longer. What I do know is that when he was on Folfirinox it was a pretty miserable time for him and for me on the sidelines.

I wish you well.

Squeaky

Hi Squeaky,

Many thanks for replying. Since posting, I have managed to talk with my family. Tough conversations - but I am really pleased we have done it and think it will definitely help them all in the long run. 

I have also had some surprising and very supportive conversations with the medical professionals. In fact my consultant phoned me back after an appointment to say that after consideration, he could see that the impact of the chemo was so significant that it could outweigh the benefits I might get from it and he would fully support any decisions I make.

Living with dying is a good phrase and I feel very strongly that I need to be “living” whilst knowing I am dying. I can’t change the outcome, but I can have some control about how I get there, and it doesn’t have to be all miserable. 

We haven’t made final decisions yet, but have already started talking about weekends away etc. which I couldn’t do on the chemo

Many thanks again for your kind and thoughtful words and the time you took to write them. They have truly been very helpful.

Wishing you all the best, 
Cardy

Hello Cardy,

I'm glad you have spoken with your family. Whatever you decide I am sure that it will be for the best.

Squeaky