I’m 76 and neither targeted therapy nor Capecitabine have worked to slow progression of extensive mets in my spine My oncologist thinks I probably have a nasty cancer cell that’s not going to respond to anything .
However yesterday she suggested trying tamoxifen as third line treatment ( she discounted others ) as there is a small chance it might slow down symptoms . She said try it for two weeks and leaves it up to me if I can’t cope and stop it .
However I’m terrified of starting given the high incidence of fatigue and other issues .
My oncologist says she can’t extend life and doesn’t reckon it can slow progression either . I am effectively now just dealing with supportive care from gp and hospice . I have accepted my life is now limited .
Has anyone in similar position to me tried tamoxifen ?
I am able to do less and less even before starting it and only walk a third of a mile without being too tired and do very little . I already sleep badly . I accept as does the oncologist that I’m not on a winner but now I feel guilty and a wimp if I don’t try but too scared not to as she’s hoping it just might slow nerve involvement . I don’t have months left to ruin with side effects and just want as best quality as possible to get out if possible and see family and friends .
Oh dear . It’s one thing her telling me it’s up to me and I can stop any time but quite another for me to feel it’s ok not even to start .
Things are going downhill quite fast but having been taken off Capecitabine because it failed I now feel at least not unwell from side effects of drugs .
Of course no one can tell anyone what to do but reports I’ve read anywhere if tamoxifen are horrendous .
At least I see my lovely GP tomorrow who I know is married to an oncologist who works with my consultant !!!
Hi, I just wanted to say that I’ve taken tamoxifen twice: once when I was 45 for primary breast cancer. Then I was premenopausal and it caused ovarian cysts. I’m on it again now at nearly 65 because of a second primary ( changed from AI because of UTIs) I find tamoxifen much easier to tolerate now that I’m far past menopause and I think you might too. I have no real side effects apart from thinning eyebrows (!) and I reckon the AI got a start on those. Tam might hold back the nasties for you for a little and you might feel OK too. You can pace yourself but you might not feel more fatigued. Give it a try. I really wish you well! X
I just wanted to say I have never heard anyone sound LESS like a wimp than you. I salute your brave courageous attitude and would trust in your judgment to make the right choices. You are amazing.
Hi Gillmary
I cannot comment on your situation I am on letrozole myself and lots of side effects
However I just wanted to say the same as the other lady you are anything but a wimp!!
You sound like an extremely strong person who is giving as much as you can. You should be so proud of yourself. Keep doing what you are doing
Wishing you all the luck in the world
Please look after yourself
Lynn x
Hi Gillmary
So sorry to hear what you are going through. I completely understand that you are looking for best quality of life. I went on tamoxifen after 5 years on anastrazole and found it MUCH easier to tolerate. Can’t say I noticed any side effects at all.
I can’t comment on its use in your situation, but if you don’t try it you might always be wondering if you should have. You can always stop if you don’t get on with it, and the tablets would be out of your system pretty quickly. But that is just how I would feel and we all make our own decisions. And, as someone else said, you should NOT be considering yourself in the wimp category.
Sending lots of hugs
Eily
Hello @Gillmary
I am so sorry to hear of you situation and I hope that talking it though with your GP will help you to come to a decision. I understand that you are appreciating not having side effects from therapies and don’t want to start again with new ones. I’m not sure what I would do in your situation but maybe I can give some perspective on the whole hormone therapy / side effects debate.
We complain a lot on here about our hormone therapy - I am one of the worst culprits but many women take it without many side effects. From what I understand about Tamoxifen many of the potential problems it can cause tend to develop when taken long term. I refused it and later my Oncologist agreed I shouldn’t have it because of my medical history - but this was based on long term risk by which I mean at least one year. The potential problems that might stop some of us taking it or potentially needing to stop after a year / few years may not be significant to you in your situation.
I later stopped Anastrozole due mainly to joint pains. For what it’s worth from talking to people in my support groups there are far more complaints about aromatase inhibitors than Tamoxifen and a couple of people have changed from an AI onto Tamoxifen and are sticking with it. One lady said she has no side effects from it at all which surprised me as I thought she would have some hot flashes at the very least as these are the most common side effect of all the hormone therapies. I would say it took a month for my hot flashes to settle to a manageable level on Anastrozole.
I don’t envy you your decision . You are a very brave lady who has stated her case with clarity and dignity - definitely not a wimp .
Sending love xx
So sorry to hear of your journey with breast cancer. I’m currently taking tamoxifen and have done so for the last 5 years with no side effects. I’m 64yrs old and was diagnosed with grade 3 breast cancer in 2018 & opted for the mastectomy followed by 3months of chemo opting out of radiation.