Hi Pompom,

Welcome to our forum.

I am so sorry to hear about your diagnosis and the problems that you have been experiencing with chemo.

My mother had breast cancer for 12 years before she developed metastases in her brain, bones, liver and lungs. That was 21 years ago and, she wasn't offered any further treatment at this stage.

Whether or not to continue with chemo is sadly a question that nobody can answer on your behalf. You have to weigh it all up and reach a decision that is the right one for you.

We did have to adjust mum's pain medication throughout this time, but she was quite lucid and able to talk to us until the morning that she died.

We would all love to know how long we've got left, but sadly, this is another question that has no easy answer. At best our doctors can make a 'guesstimate', but they have sometimes been way out in their predictions. As you draw close to the end there are certain signs which your nurses may pick up on, but this is not usually until death is imminent.

Your consultant may be able to tell you what to expect either way, although if the oncologist has broached the subject of stopping all treatment, it sounds as if he may feel that this is the best solution for you.

I feel for you, having to make such decisions at only 56. Do you have a supportive partner or friends who can be there for you and, maybe discuss the pros and cons of this? It really does help to have someone to confide in.

Please let us know what you decide to do. We are always here for you.

Thinking of you and praying that you reach the right decision for you.

Kind regards,

Jolamine xx

Hi Jolamine

Thanks for your reply and kind words. I am very lucky to have an extremely supportive partner, family  and friends. We have been discussing the possibility of ceasing the chemotherapy for a few weeks now. Obviously, no-one wants to see me deteriorate and ultimately die, but they have seen my suffering from the treatment and understand my wish for some quality of life. They will support me with whatever I decide, but, as you say, ultimately, the decision is mine to make. 

I look forward to reading any further comments on the forum and I will continue to discuss with my family and friends. I will keep you informed of any decisions.

Kind Regards 

Pompom

Hi Pompom,

I am glad to hear that you have an extremely supportive network behind you and one that will support you whatever you decide.

As far as I can see, you either deteriorate and ultimately die suffering from the effects of chemo, or you deteriorate and die (possibly a little sooner), but with a better quality of life to the end. My apologies for being so blunt.

If you want to read more about chemo, you could go to the blue banner at the top of this page and click on the search engine. Pop in 'chemo' or 'chemo side-effects' or 'refusing chemo', or something similar, and this will bring up previous posts on this subject. This may help you to reach some conclusion.

Kind regards,

Jolamine xx

Hi

Update on my decision. I spoke with all my family at length about this. Everyone of them agreed that I should stop the chemotherapy. Although they obviously don't want me to die anytime soon, they don't want to see me constantly suffering from the side effects of the chemo. This was a great relief to me as I was feeling guilty about stopping the treatment when it was actually working to stop any spread of the disease. 

Anyway, saw my oncologist yesterday and my chemotherapy has now stopped. He was very understanding and agreed that sometimes quality of life is more important than quantity. My oncology team will continue to monitor me and a CT scan has been scheduled to check for any progression. 

 I feel a great sense of relief, as if a weight has been lifted from my shoulders! Hopefully I will progressively start to feel better and get back to my old self for a while. I am planning a long weekend away with all the family after Christmas, where we can all chill out and enjoy some time together. 

Hope you all have a fabulous Christmas, I know I will!

Pompom xx

Hi Pompom!

I too got NSCLC stage IV terminal with Mets. Chemo didn't work for me , had two diffrend ones. But i get Immun Therapy now with Nivulumab, nearly no side effects just my Thyroid playing up but i get meds for that. I got now a nearly normal life sinde over two!!! years. And feel fine, would this not be an option for you??

Petra

Hi Pompom,

Many thanks for your update. I am delighted to hear that you have finally reached a decision about chemo. It is really helpful that you have the full support from all of your family to stop if you want to. It sounds as if your oncologist is also happy with your choice and, it is good that he is still getting his team to monitor you.

I have had 2 bouts of breast cancer in the past 8 years and have had neither radiotherapy nor chemo. I have never regretted this.

You have made a very brave decision and I am in awe of you. As I said in one of my previous replies, only you could make this decision. You must feel as if a ton weight has been lifted from you now that you have stopped.

It sounds as if you are doing the right thing for you, which is important. There is a lady on this forum called Chriss, who has grade 3 breast cancer and, has refused radiotherapy and chemo and she is doing very well. I’m sure that she will be along shortly to chat to you. She is a real trooper.

I am glad to hear that you are going away for a family break after Christmas. A diagnosis of cancer is a great way to appreciate life and to discover what is important to you. My family is my world. I have done my best to be realistic about my cancer, yet to create memories that will remain long after I am gone.

I hope that you have a fantastic Christmas and really enjoy your weekend away.

Do please keep in touch. We are always here for you.

Kind regards,

Jolamine xx

Hi Petra

Thanks for your reply. Glad to hear you're enjoying life after 2 years of treatment, must be wonderful for you! Keep on smiling and savour every day! 

I did receive immunotherapy early on in my treatment. Unfortunately it wasnt suitable for me. It started attacking all my joints which was extremely painful. The worse thing was the effects on my hands and fingers! Couldn't perform any everyday tasks and had to depend on help (which I hate) for everything. 

Hopefully, now that my treatment has stopped, I can start enjoying my life again like you do. Stay happy!!

Pompom 

my husband  has  advanced pancreatic cancer with another bowel cancer. he only started palliative chemo 2 weeks ago . once a week for 3 weeks and then a week off. however he is in such a mess already. the first week was not bad but this week it has really hit him. he has spent most of the day in bed and can not cope with anything but water. his stoma bags fill with fluid at an alarming rate. he is weak and finds it difficult even to walk to the bathroom. he says if chemo does this  then he would rather have a short time feeling better  than weeks of living death.  quality over quantity any time. we all respect his decision.

Hi Carroll

So sorry to hear about your husband's diagnosis. 

I stopped my chemotherapy back in November 2019. I have to say that I'm positive I've made the correct decision. Although I have a terminal prognosis, so far so good. No significant progression or growth of my current tumours, and I'm feeling so much better! No nausea and vomiting, constant chest infections, brain fog or fatigue! I've been on holiday with family several times and had great adventures and created wonderful memories!

If it is your husbands wish to stop chemotherapy, you must support him all the way. I know I felt a great deal of guilt when I made the decision to stop treatment, thinking I was denying family and friends precious time with me. They would all now agree that I made the right decision. Being able to spend quality time, feeling well, is so much more important than hanging on for a few extra months!

Hope all goes well for you and your husband. Please stay in contact. 

With love x

Hi Pompom,

I am glad to hear that you are so happy to have stopped having chemo. It is also good to hear that you have the backing of your family and friends.

I agree that there is a lot in quality of life, as opposed to having a little extra time along with the side-effects. Your advice to Carrol is spot on.

Please stay in touch and let us know how you are getting on. We are always here for you.

Kind regards,

Jolamine xx