Just to add, I have switched but too soon to update…
Just thought I’d mention regarding insurance, as it might be useful for others to know - I spoke to Howdens brokers as I’ve just bought a flat and wanted mortgage cover (Accident, sickness and unemployment (ASU) insurance).
I’m 2 years out of active treatment but as I’m on Exemestane the agent said I wouldn’t be covered for breast cancer by any insurers, as you are considered to still be undergoing treatment.
This was a bit upsetting! I said the insurance industry needs to catch up as this medication is meant to stop cancer coming back. I understand if I stopped taking it I would be able to get the insurance after a year. This is mad, surely?!
I think there’s some confusion among the insurance community as to what constitutes treatment and I think they are a bit out of date as you say.
I always get grilled about it when I ask for travel insurance . You say if you stopped it you would be able to get insurance after a year but some companies would consider that as refusing treatment . When I get travel insurance and we get to breast cancer I’m always asked if I’ve ever refused any treatment - I did stop hormone therapy after a few months but fortunately my surgeon had recorded in one of my GP letters that the perceived benefit to me was very low and that it would be reasonable for me to stop. Last time they only asked if I had refused surgery chemo or radiotherapy . Xx
Thank you for responding. I posted it but they stated they are located in the UK (no surprise there) and gave me some US resources that I have already tried. But at least they responded. I am glad to hear there is someone somewhere that is not suffering tremendously on it.
That’s because it is. I recently got travel insurance for a trip to Norway. When the invoice came the breakdown was 50/50 travel insurance cost and cancer additional price. I’m on Ribo and Letrozole and just have to have monitoring blood tests every 3 months, with the side effects managed by other tablets. I’m chewing the White Cliffs of Dover for the calcium but as I like igneous rocks more I’ll carry on. It’s annoying when there is so little knowledge about cancer within the insurance industry. There is a move afoot that cancer will not need to be mentioned after 5 years in the future as currently you have to mention it for ever. Not sure how long we will have to wait for that to be implemented. However, with the treatments being able to be refined so much now it should be sooner rather than later. The thing to remember is you are entitled to request a change of medication and if you get your GP being silly, advocate for yourself. I have until recently had the Accord brand of Letrozole. The latest batch was a different brand and the depression was horrible. I’ve swapped back and my gp doesn;t like it. Pity!!
I’ve changed from letrozole to anastrozole.had terrible joint pain with letrozole.we shall see what happens. I think they should look again at these sorts of medications and their side effects!.
I hate taking this stuff understand what people take tem for but it’s not good for your body you end p taking supplements to counteract all the side EFFECTS!
Hi Frances, I’ve been on Letrozole since surgery (September 2024) and have been coping with the list of side effects well. I always received the Accord brand. However, like you I had a different brand in a recent prescription (Sun Pharma) and experienced a dramatic fall in mood. I asked my GP to re-prescribe and state “Accord Brand” on the prescription which they did. However on collecting from the pharmacy I had the Sun again. On asking, the pharmacist said they had no control over the brand of the drug they received in an order, but advised I could take my prescription elsewhere. I did do this and so began the “hunt for Accord”. Fortunately having been on HRT I was used to this mad scramble and was able to source a supply of Accord, albeit by luck as the pharmacy told me the same reason of not being able to order a specific brand of drug. I think this is a complete bodge by the NHS in supplying drugs cheaply. However, if they don’t work well it’s just a waste of money and our time and effort having to source the brand correct for us. Pharmacists are professionals and should be allowed to order the drugs they need and report back adverse feedback by patients. Apparently they cannot do that as it’s the bureaucrats buying the drugs. I definitely feel better back on the Accord brand and once again would advise you to advocate for yourself to get the ones you need. Just another thing to add to the post cancer to do list, but we’re used to that aren’t we! Just get your GP to put the Letrozole on a single prescription order so that you can take it away from the pharmacist and try another: you won’t be able to if you have had other items on the same sheet.
Sorry to hear that you’ve had trouble getting your usual brand of Accord. I must say my local pharmacy have been brilliant and do supply Accord most of the time. On the few occasions they didn’t have it in, they have always ordered it in and just given me a small supply of another brand until they get it. It’s usually only 24 hours. It’s not acceptable to have to go traipsing around having to find your favoured brand and I’d go back to your usual pharmacist if I were you and insist they get the Accord in for you, especially as it’s on your prescription. Like you, Sun Pharma just didn’t work for me at all. I did stick on it just for a month as a bit of a trial to see how I felt, and the downturn was swift. I was back on my Accord the next month. I wish someone could explain why this is such a thing but different brands do suit people differently. Perhaps it’s additives or something, no idea. We just have to stick with what works for us. x
Hi there, I noted in your post you said you are taking calcium tablets. I’ve recently been given Adcal D3 tablets to chew, 1 twice a day but they are giving me awful constant indigestion. I only took them for 1 week & stopped a few days before Christmas. It’s now thankfully gone away.
Do you have digestive issues with the Calcium tablets?
Once we’re into the New Year I’ll try them again but I’ll have Gaviscon afterwards, see if that helps. I’ve read because of interaction, I have to leave 4 hours gap between Adcal & Gaviscon.
I’m currently taking Letrozole, Ribociclib & Denosumab Injections XX