Stopping treatment
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EllenW
Member Posts: 1 ✭
in Day to day
I (and only I) have made the decision to stop my chemo treatment. After suffering for weeks now since my last round with hospitalisations, infections. pain, oral thrush to the extent that I haven't eaten in 3 weeks I just think that any more treatment would actually kill me. I know my family is going to argue this with me but the decision must be mine, I certainly don't want to leave them yet but I also watch their faces when they come to see me and see the pain and grief in their eyes.
On the subject of hospitals I hate bloody COVID ! Who thought it was a good idea to keep cancer patients from their loved ones during the hardest times?
On the subject of hospitals I hate bloody COVID ! Who thought it was a good idea to keep cancer patients from their loved ones during the hardest times?
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Hi @Ellenwatson65 , sorry you find yourself here. It not the club we want to be in.
You have to be satisfied with the treatment you are having and have no regret if you decide one type of treatment is not for you. It's your body and your life.
Sorry you experienced all those side effects. I never really had any bad side effects from chemo. Yes I had a few but my oncologist said if I experienced bad side effects from chemo she would have failed at her job. I did reduce the amount of my chemo short and stopped short by 1 treatment because of peripheral neuropathy.
We are all different and we react differently to treatment as well. I wish you well in recovery.0 -
Hi @Ellenwatson65, I,m so sorry you've had such a bad time after your first chemo. I was diagnosed in 2016 with Stage 3, Grade 3, Triple Positive, multifocal, (more than one lump), and with node involvement. So...an aggressive cancer, just short of stage 4. I had 4 X AC chemo, followed by 12 X Paclitaxel and Herceptin for just under a year. I had chemo first, followed by a bilateral mastectomy with node clearance on the left side, and sentinel node on the right. I had a dreadful time with the AC part of chemo, being hospitalised after each dose, for a total of 56 days and nights altogether. The shortest stay was 8 days, and the longest was 17. The last dose was delayed by eight days, and reduced by 25%. I felt like throwing in the towel too, but I knew that I had one shot at this for a cure and so kept on plugging. The pathology from both removed breasts and all the nodes found a 100% pathological response to the chemo, with no live cancer cells found at all, only the (quote), empty tumour beds. That made it all worth while for me. I'm now five years post active treatment, aside form letrozole tablets as I' was hormone positive, and remain NED...no evidence of disease. Chemo is hard...not so hard for some...and very hard for some, but in my case, it was deadly for my cancer, and for that I'm glad. I strongly recommend you discuss this fully with your treating team, and see if maybe they can either reduce the dose or change your chemo. Unfortunately we only get one bite of the apple, and there's no rewind button. I wish you well with your ongoing treatment.5
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@Ellenwatson65
Hi, the decision is of course yours. But the timing of any decision is critical. Making a really important one when you are ill, probably depressed (at very least feeling isolated) and at the end of your tether may not be the best time. You can take a break, you can discuss what other options are open to you, you can seek another medical opinion.
It goes without saying this is a lousy time to be in hospital. Staff are trying not to add to your problems by getting Covid, but it doesn’t alter the misery of it. It also doesn’t help your thinking processes. If you can get a bit of clear light and space, you may well make the same decision. The main thing is to have no regrets, as @AllyJay says, there’s not much of a rewind button. Best wishes whatever you decide.
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Hi @Ellenwatson65 I am so sorry you're copping all the nasty side effects and hospitalisation and really feel for your suffering. How long have you been on chemo?
Hubby has had similar side effects with his ongoing Stage 4 palliative chemo, tho not the pain or oral thrush - and our Onc actually mentioned stopping treatment as being an option, just 4 weeks ago ..... But then, after having the chemo dose reduced and an 8 week break (due to hospitalisation/infection) it has actually given him a new lease on life - and he's bounced right back. This bloody disease (and sometimes the treatment) just sucks the life out of you .....
As AllyJay suggests - maybe chat with your team to see if they can adjust/delay your treatments - but when it comes down to it, it is your decision to make and a brave one at that. xx
Take care & all the best xx0 -
I get it! I stopped chemo early because it sent me to hospital on death’s door. If I’d had an aggressive cancer or if I’d had positive lymph nodes( which I didn’t) then I may have pushed on. I talked it over with my oncologist and he was ok with me stopping.That was 12yrs ago and I’m fine. Get the facts,ultimately go with your instincts but then have no regrets. Every bc decision is an awful one- there’s no right or wrong.2
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I get it also! I stopped hormone tablets early because of debilitating side effects combined with my thyroid med. Oncologist strongly suggested I stop because the most benefit for me was in the first 3 years and I had low ER positive % to start with. I was to make it to 5 years on hormone therapy, but I made it to nearly 4 years. Will it return, idk, but my memory was so badly affected I left the grill on while cooking and nearly burnt my house down, no point me going up in a puff of smoke, and killing myself that way.
@Tonya I agree facts, and instincts finally helped me decided I was at high risk of snuffing myself out by leaving the stove on and messing up which medication I took and when. Hormones, and lack of them to balance our brain functions is also very important.
@Ellenwatson65 talk with your specialists and see also if there are alternatives before abandoning it completely, but I understand ultimately our decisions need to be weighted with the benefit/versus risks, and your gut instinct will then be your best friend after getting the facts.
Totally agree, every bc decision is awful @TonyaM , in that regard chemo was very important for me as was in the lymph nodes, and thankfully I got through the 6 months of treatment rather OK, meaning I didn't end up hospitalised, but the usual brain drain and fatigue, and digestive issues. Not a picnic, but my body managed well enough.
Best wishes on weighing things up @Ellenwatson65
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@Ellenwatson65 stopping treatment is a big decision, but no bigger, in some ways, than agreeing to start in the first place. If it makes sense to you, that is your prerogative
On that topic, choose your battles when it comes to telling family and friends what you intend to do.
Talk to your medical team first and then tell anyone else who absolutely needs to know. You will get some push back from both quarters, but the personal stuff is harder to manage, so be prepared for some people trying to crawl into your head. You probably already know who they will be so perhaps cut them out of the loop for now.
In the end, they are not living in your body. If you've given it your best effort, so be it. Mxx0
