Hi Ladies.
I’ve reached the point where I have just stopped taking the tamoxifen. I’ve only been on it a month and a half but even then there were a few days I didn’t take it. I feel so bad. I’ve not eaten dinner in a week, just snacking on fruit and things that I can easily digest, part of this is because I had whole brain radiotherapy 4 weeks ago and it’s left me exhausted right now but not eating is not helping that and my OH observed that every time I start the tamoxifen again my appetite crashes 4 days later and I’m nauseous as hell. Worse than I ever was on chemo, even when I took the anti emetics late.
I figure at this rate the lack of eating is going to kill me long before my brain mets. So I’ve just stopped. I’m going to see my GP on Tuesday and if my OH is correct I should be eating properly by then again. I stopped the pills 2 days ago and this morning I wasn’t quite so bad already.
Did any of you have this? did you stick it out? Did it pass?
I’m not even 100% convinced I need it as I had 2 tumors originally, 1 larger triple neg one and one smaller slightly hormone responsive one. They don’t know which is in my brain and they’d have to take a biopsy to find out.
I’m going to see what the GP says (and she’s good) but this is ridiculous.
When I had radiotherapy last november it affected my appetite too so it’s really hard to be sure what’s doing it. Quite possibly both.
If there’s anyone the other side of this I’d love your stories.
Lots of love
Angie
Munching dried oatcakes again, at least they’re energy.
Angie,
I sympathise with your loss of appetite and nausea. For me that has been one of the most miserable things about this b***** secondaries business. Like you I sometimes can’t figure out what is causing it, sometimes I think it is the cancer mets (in partic I think my meningeal mets has coincided with loss of appetite and weight). Also the various chemos seem to have almost completely messed up my taste buds.
However to-day the doctor described me as ‘slim’ which is not what I was 18 months ago… and my daughter dragged me into H&M to get skinny tops. I never thought that would happen. Still I’d rather have more weight and enjoy my food!
The only advice I would give is to talk to your onc as well as the GP, although you do say your GP is good it seems to me this is significant for your overall treatment.
Hope you have a good week-end,
Lottie
The other thought is to swap from Tamoxifen to a different hormone inhibitor??
Hello
If you have had chemo then perhaps you are post menopausal?
I’ve noticed plenty of ladies on here who are but are still on Tamoxifen when they could (and mayne should) be changed to an A.I. It could make a lot of difference to you.
Best wishes and try ice cream as oat cakes are filing and too “good” for you!
Hi Angie,
So sorry to read of your eating problems…and constant nausea is horrible.
Do you have a hospice or MacMillan nurse? I find that mine is a resource of information and real helpful advice on all kinds of symptom related things. In my area the hospice nurses work brilliantly with my GP…its a ‘partnerhsip’ which seems so far to be working really well-the hospice nurse advises me and GP on drugs, things that will help and the GP to responds to that advice.
Also talk to your oncologist about the nausea and lack of appetite…there might be a cancer related reason.
Thinking of you.
Jane
Hi Angie,
one of the ladies that had rads for brain mets lost her apetie and went on the fortisip drinks they are full of all the nutients that you need.
I had them when I couldn’t eat a few weeks ago, not that bad if you chill them.
Love Debsxxx
I’ve found that regardless of the reason for my lack of appetite (& I’ve experienced this throughout all 3 of my treatments), medical cannabis restores it. Sometimes it takes an hour ir two, but my appetite does return and I’m able to enjoy my food too. Without it, I can’t stand the thought of food. I’ve been able to maintain my weight for almost a year now.