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Refusing chemotherapy

11 REPLIES 11
Community Champion

Re: Refusing chemotherapy

Hello,

 

The choice is yours but you might want to know what you can do to help yourself with chemo.

I had all docetaxel and carboplatin due to heart issues. Well I needed Herceptin and than can damage your heart so I could not have the usual FEC because that can damage your heart as well.

 

I had 4 out of the proposed 6 rounds because my blood counts went too low to continue. I had minimal side effects because I fasted for 48 hours before, the day of and I started eating again on the morning after my chemo. I followed to research by Valter Longo, have a look at this and compare the mice at about 38 to 60 seconds in:

https://www.youtube.com/watch?v=LGafhm1cuSI

 

A few of us have fasted and there is a thread on here with lots of info on it. I also used a cold cap and kept lots of hair.

 

Good luck with whatever you decide.

Member

Re: Refusing chemotherapy

Re corsodyl toothpaste - I've tried it in the past, I react to both sodium lauryl sulphates (which I believe it doesn't have, or didn't when I tried it) and extra fluoride, which it does have and it didn't help me at all, I'm careful with the mouthwash but that does seem to help as a preventative.

The toothpaste I use is an aloe Vera all natural one for sensitive teeth and gums and over the years I found it has reduced mouth ulcers from at least one a week, with once a month having one which affected my ability to speak even, to maybe one every month with a really bad one only occurring a couple of times a year tops. So I'm kinda happy with my toothpaste atm, but Helly your post gives me a lot of hope, thank you! 

Community Champion

Re: Refusing chemotherapy

Super news. It would seem you are well looked after  💐. X

Member

Re: Refusing chemotherapy

Hi Fluffball

 

So pleased that you have got things clearer in your mind and shared concerns with your team!

 

Just wanted to share my experience re mouth problems.

 

Pre chemo I often had horrendous mouth ulcers that took well over 7 days to heal and nothing made them better, I just had to go with it but they usually happened when I was run down, and the same for coldsores - huge beasts that hurt like hell!

 

I was really concerned that during chemo my mouth would suffer, I had EC-T treatment - so three EC's (epirubicin. cyclophosphamide) every 3 weeks and then 3 T's (docetaxel) every 3 weeks.

 

Apart from a slight sore throat on cycle 1 I have not had a single mouth ulcer or coldsore (touching wood right now as dont want to bring any on!) The only other tip I can give is to try using Corsodyl toothpaste - it tastes gross at first but you get use to it.

 

Good luck, thinking of you

Helly xx

Member

Re: Refusing chemotherapy

Thank you everyone for your feedback, it's been useful. 

Update:

As this has been playing so much I have got hold of my BCN and team at my hospital and managed to get in to see them to discuss my immediate concerns. 

Firstly they have absolutely agreed that my family history of heart problems I likely to change my recommendations - apparently some parts of the chemotherapy I would normally be recommended have fairly high risk to the heart so it's unlikely they will now recommend these, they will be consulting with an onco-cardiologist at another hospital and have already agreed to some extra tests both before, during and afterwards. Whilst they warn me that this means the chemotherapy I'm left with may not be quite so effective, they agree that the extra risk I carry for my heart it isn't worth it. This is a huge weight off my mind, for me, even now the fear is heart NOT cancer. 

As for my experience at A&E, they have assured me that whilst having the chemotherapy the admissions is very different and that my oncologist will address this with me at my appointment - I have reiterated though that I will not be continuing traatment if I go through the same again, they have reassured me that things will be handled very differently, and by my own hospital rather than another. 

As for side effects, most don't concern me, the issues I have with my mouth I have been given a variety of suggestions to try out on the run up to treatment and see how they work, most I must admit I have already tried/already doing - I use toothpaste that is all natural, soft brushes, I use mouthwashes that are none alcohol and aimed at preventing gum/mouth problems, I use difflam already although usually to help treat rather than prevent, manuka honey (thank you Annie) I have tried in the past, treatment strength, and it actually made matters worse for me (damn, I love honey!) but one thing suggested was pineapple, apparently it can, like the honey, either help a lot or make it a lot worse, but I've never noticed it make things worse so I'm giving it a try - lots of pineapple juice and to freeze pineapple to soothe and even try frozen pineapple whilst having the chemo - similar to cold-capping effect, keep my mouth as cold as possible to lessen blood flow to that area. So far, and two litres of pineapple juice in and a whole pineapple eaten - my mouth has been great, probably better than normal, which gives me hope!

Soooo.. Result at present looks like - delaying treatment a little to geet proper picture of heart health and adjusting recommended chemo treatments to take into account they need to protect my heart. Whilst not ideal for the breast cancer team in that it reduces the effectiveness of my treatment, for me, the best way forward. 

 

Community Champion

Re: Refusing chemotherapy

Hi Fluffball,  I’m pleased I read your second post as your first one read so negatively I was a bit, very, concerned. So , basically A&E is rubbish so why go there? It’s full of sick people!!!! I have an alert card to carry from my hospital and as soon as my temp hits 37.5 I’m admitted. I’m afraid it does tend to zoom up alarmingly, but I haven’t been there for five months so that’s great. I was thinking of naming a ward after me as even a little scratch when rock pooling saw me in hospital with sepsis 😱 I think you’ve had an incredible array of health issues and can only say how pleased I am that you have confidence in your Onco , always a plus. I’m sure that your very sensible questions will be answered and you can make a reasoned decision. Also please take on board what people are saying, that the chemo myth does frighten people off. I was on FEC-T so know about mouth issues, or rather, I don’t as at the first sign I took manuka honey which sorted it for me! A miracle complementary bit of goodness. Wishing you all the best for your next meeting. X

Highlighted
Member

Re: Refusing chemotherapy

That’s so good to hear, fluffball. Re A&E, emergencies relating to chemo go straight to the oncology emergency line in most hospitals and you’ll get admitted to their assessment ward for...assessment. Just put that on your list of questions but it should be fine and hopefully you won’t need it. I’’d never been to A&E in my adult life but had 3 visits. The first (after my car accident) was crap, the second was when the onc nurse rang ahead (they wanted my ribs checked out again) - that was good - and the third was straight in, no waiting, straight to isolation. They were brilliant once they knew I was being treated for cancer and was immune-compromised. It should be the same for everyone of course.

 

Sorry you’ve had such bad experiences - yes I did misunderstand. Good luck with your questions so you can make an informed decision. 

 

Jan

Member

Re: Refusing chemotherapy

Hi Jen, I think you are reading my question wrongly, I am far from "writing myself off"  in fact the question of "survivability" hadn't even entered my consciousness until the doctor started talking about it - I have absolutely NO sense that this is going to be anything but a glitch in my time line that in a few years I get to tell everyone "hey, wasn't fun, but I got a fake boobie out of it!" 

I also have 100% confidence in the team at my own hospital, however my hospital doesn't have an A&E department and for me this is where care completely collapses, and it is this that I do not wish to experience again and that I believe accepting chemotherapy is going to risk needing. After my disastrous visit to the local A&E my surgeon was equally unhappy with my treatment and gave me his own personal number to call out of hours, telling my husband he didn't want anyone else touching me and not to go anywhere until I've spoken to him, so my belief in my team is amazing, and probably part of what makes questioning their treatment plan so difficult. 

I think the question I need to ask is how absolutely necessary do they believe it is for me to have the chemotherapy, I need to know they are taking into account the risk of weakening my heart with my family history (that far, far outweighs any worries I have about cancer, even in the middle of all this!), I want to know what happens if I'm in need of emergency care, because if I'm to go through the same again  I can say the chances of convincing me it's worth that risk are very low. I need to hear a discussion on the risk of meningitis returning because the chances of mouth problems, especially for me are going to be high. I need to know that what chemotherapy is going to put me through is going to be worth it and right now I don't actually believe that, I believe the radiotherapy and hormone treatment is going to be far and away enough and that the chemo is simply over cautious over-kill that I really don't want or need. 

 

 

 

Member

Re: Refusing chemotherapy

Wow, that’s a big decision! I’m sorry you have had so many things to deal with over the years, but it doesn’t mean that chemotherapy will be the same. I can understand your fears & worries about it, but please do talk everything through with your oncologist before making a final decision. Life is precious, and so is yours. You have people who love you.

Member

Re: Refusing chemotherapy

Hi Fluffball

 

What a pickle. It’s hard when you have no confidence in your team. And even worse when you have no confidence in your future. Writing yourself off at 47 rather distressed me. At 67, I didn’t think about death to be honest, just getting on with it all. What does your son think?

 

First, your oncology team is separate from your surgical team so it would be a fresh start.

 

Second, although statistically it doesn't look like chemo makes a major difference to long-term survival rates, that’s just statistics. If. say, it makes a 3% improvement, that includes people who’ve found a 100% success and those who’ve found no improvement - and you have no idea where you are going to be. What if you were in the 100%ers? With infected nodes, the more treatments you have, the less likely you are to experience a recurrence.

 

Third, you’re wise to stop and think. Chemo wiped me out. I was like a zombie for a lot of the time, responding quite badly. BUT I know of others who almost sailed through. It’s a lottery. However, the mouth is definitely affected and, though the hospital pharmacy equips you with everything you need to manage it, it’s not easy. The option is there to reject the treatment but I’d say discuss it with your oncologist to be sure you make an informed decision. I am the biggest coward, all I cared about was my phobia for vomiting and I saw chemotherapy as this impossible monster. The oncologist took this on board, even arranged for me to visit the chemo suite before making my decision and they made special arrangements to accommodate my fears. I never even felt sick, never saw anyone sick. It’s not great as a treatment but it is manageable and we all get through AND you are monitored very closely for side effects so there is an option to stop at any time. I was given the option twice but kept going.

 

Please take someone with you when you meet the oncologist. Someone who can have your list of questions to hand and make notes, maybe ask the questions you forget. Nothing really goes in but you can have a proper conversation and express your fears and doubts and your oncologist can talk and show you the stats and your companion can jot everything down to think about later. You’ve also got a hand to hold or shoulder to cry on if you need it because it’s a tough conversation to have at the best of times. 

 

I hope you resolve your dilemma. I’m a year on from surgery, 6 months on from chemo, still a few minor side effects. But I have no regrets at all in just grabbing all the treatments on offer even tho they terrified me and and made me more ill. They’ve given me confidence. What’s important is that you make an informed decision for your particular diagnosis and personal circumstances - make sure the oncologist is aware of these. I hope your oncology team is way better than the surgical one! 

 

Best wishes, Jan x

Member

Re: Refusing chemotherapy

Don ‘t refuse .... seriously . I had 12 chemo treatments it was hard but do-able was never sick just bit nauseous slept a lot wouldn’t like to do it again but my view was if they recommend costs NHS  and probably necessary . Reconsider x p

Member

Refusing chemotherapy

I had a mastectomy and auxiliary node clearance on the 14th October, results today were 3 tumours, largest 75mm, all ER+ & HER2-, with 2 of the lymph nodes being positive for the cancer. My consultant is happy that he has got all of the cancer with the operation but still recommends chemotherapy / radiotherapy / hormone treatment to follow.

Now... At 47 I am my oldest living blood relative, going through both parents lines no-one makes it past 60 and apart from my father (who passed away at 59 from colon cancer) it's all been due to heart problems.

I suffer badly from mouth ulcers, to the degree that I ended up with meningitis about ten years ago starting from a simple mouth ulcer, since having my son I struggle with anaemia, I managed to get a stomach parasite which landed me in hospital which is only found in Australia and I'd never been abroad! My pregnancy ended in eclampsia and a c-section 8 weeks early and every time I have a cold I end with 5-6 weeks of coughing and long recovery.

My mastectomy went well, although a hiccup that night I went home the following day, but within a week my drain blocked and I needed emergency out of hours help - this became a nightmare of not being listened to by doctors, not getting adequate pain relief and my seroma becoming badly infected, leaving me with very little confidence in the adequacy of care I am to expect. It doesn't particularly help that I am allergic to morphine, so the normal "go-to" pain relief is unavailable...

Soooooo.... I'm not confident that having chemotherapy is going to be worth doing, I've little problem with the radiotherapy and hormone treatments (although the latter doesn't sound fantabulous fun I see it's worth) but I'm not sure the risk of side effects with the chemo alongside my expectations of poor care if something does go awry are really worth any advantage I may gain from having the chemotherapy. 

I'm also not sure how to address this, I have my first meeting with my oncologist on the 18th and really do feel the need to at least question this, and really I want to refuse... 

Help?