Hello Chick 1
Thank you for your advice, that I shall definitely take on board - I had Accord on discharge from the hospital, and am inclined to thinking this seemed better than the Crescent. I have had a couple of 'light-headed' days, a bit like vertigo, that I made a point of ignoring, in case I started panicking about going out, and sometimes a bit of a queasy feeling lately, and these are new 'things' for me : definitely a lot more clicking in the neck too . . .
And thank you for your lovely words xx
I started letrozole in June... the first month was the Crescent brand. I had a really dry mouth, but could partly have been due to stress pre op. When I got the next 2 months supply from my local pharmacy, it was the Accord brand and I’ve been ok on that. So that’s the brand I’m going to stick with come hell or high water. I’ve got cranky joints normally but haven’t noted any major changes. I’ve not had GI problems. I started taking them at night but I’m gradually changing to morning so I take all my meds at the same time and I’m less likely to forget.
Hi I've been on letrozole for 15 months now and have tried different brands. Finally I found a brand that suits me better than others (Dr reddys). I do have SE with this, but can get on day to day much better than with other brands. I recently asked my onchologist to write to my doctor requesting this be written on my prescription. I now get 3 months supply too. So this month I had a mini victory when told by the pharmacy Dr reddys are a special order, as they are expensive, but I can have them thanks to my oncologists letter to my doctor. Its so wrong that we should have to almost fight for a brand that suits us. Friends who have not experienced bc cant believe this happens. So my message is dont be told no or that all brands are the same. They are not 🤔 good luck finding a brand you can cope with. X
My oncologist recommended sage tablets and a cooling pillow (chillow) to help with hot flushes brought on by Letrozole in my case, maybe worth a try? She also mentioned the possibility of very low dose Venlafaxine, but I'm going to try sage and chillow first!
Sorry to hear you are having a bad time. Good on you for "stomaching" it for 10 weeks and trying to give it time as sometimes side effects can resolve or reduce after a few months
Any advice or suggestions? Yes - educate your BCN and send her a copy of the Patient Information leaflet (PIL) with the bit highlighted where it says common side effects are gastrointestinal disorders such as nausea, vomiting, indigestion, constipation, diaharea blah blah. Well I am assuming that is what it will say on the PIL for your brand of letrozole.
Disturbed sleep and night sweats are well known possible oestrogen depleted side effects.
Out of interest, when you take it, do you take it with food? I know it may say on the PIL that you can take with or without food, but it may prevent the gastrointestinal problems if you try with food . Do you take it at night by any chance? If so, maybe a switch to morning after breakfast for example. (I take Anastrazole which is similar and noticed I can feel more nausea when I take it without food).
If no change perhaps discuss with GP and check that there isn't an unrelated stomach condition or discuss ways of managing the side effects including use of other medicines if that is acceptable to you.
As for your Oncologist - well she is right in that it is an unkind drug and it may be what you need to reduce recurrence - but it's not much help just saying that to someone if their quality of life has gone down the pan as well.
If you are still suffering, then try and arrange an earlier appointment or meet with BCN to discuss the issues you are having , possible use of alternative AIs or using Tamoxifen (unless you have been down this road already).
You could also discuss having a short break to see if any problems resolve and then retry as some people do. Some people have discussed taking half a dose/tablet per day for a time to see if effects resolve/for a gradual transition. Anything may be better than nothing.
If your Onco or BCN is just unhelpful and won't listen/discuss alternatives, well just ask for a second opinion from another medical oncologist as is your right.
Hope you are feeling better soon and matters resolve.
All the best to you, 🐣 Chick X
Irrespective of the information from your pharmacist, or even the view that all generic brands of the same drug are the same, I just want to stick with one brand. The main ingredient may be the same but fillers and constitution of them are not otherwise all brands of, for example, Letrozole, would display the same product licence number, which they don't.
If different brands are no problem for you, and I hope that is the case, then that is brilliant. If you do find one brand better for you than another, then ask your GP to specify it on the prescription. The pharmacist should then have to order it in for you if they don't have it in stock. I have found Boots have been excellent with ordering the Teva brand of my AI for me. I went in this week with a script and bless they had 2 packs already set aside with my name on them.
I know what you mean about not knowing what is a side effect of anything anymore. That's how I felt, especially after chemo and with a number of other treatments going on. With the AI (I am on Anastrazole) now, after a year of it, I just think it just makes my body cramp more easily and makes it harder to go up and down from the knees!! Basically, it is emphasising what the menopause has already put into action!
However, I did accept the Bishphosphonate treatment, initially for a small possible reduction in recurrence but also because it would hopefully reduce the impact of the AI on depleting bone mineral density. I thought a 6 monthly infusion was worth it.
Best Wishes to you, 🐣 Chick X
PS. Have noticed how supportive you have been to people in helping them to locate local resources where relevant. How nice of you to make that extra effort. X
This is a difficult one, I am given Crescent brand by my GP's really excellent pharmacist, and when I spoke to him about the possibility of asking for a specific brand, he said that they have to accept what is given, as the NHS does deals with the most cost effective brand at any particular point? He is a really helpful pharmacist who wouldn't fob me off unnecessarily, so I'm a bit stuck with Crescent - at the moment. I don't know what is a side effect of anything anymore, lol, whether it's delayed R/T ( finished 20 zaps on 7 August ) or the letrozole or aches and pains I had before this diagnosis 6 months ago, when I went regularly to a chiropractor for back/leg/neck/shoulder issues that came up from time to time. I'm 63 so age is probably a factor for me - I have refused bisphosophonates.
Just read your info with interest. I have just been given Crescent, never had it before, only taken it for a week but am in bed today feeling unwell with sore muscles, nausea, ultra dry mouth and no energy. The only other tab was Cipla which I have said I don't want anymore, it was painful to walk.
We were thinking I had some bug as it's only been a week. If it continues I will have to see the doc. Problem is you never know what you're going to get from the pharmacy, they said all they can do is put on the list ones I don't get on with, think this one will be added. I was fine on the previous one, Manx.
I hope you got yours sorted out
I've put in a new request, so hopefully will get a new prescription in a couple of days. Xx
Hi Sue different brands of letrozole are a nightmare arnt they. I not sure they will change that pack for you, I once left the chemist then realised when I got in my car they had give me a new brand. The pharmacist was really reluctant to change them and I had to go back to doctor. Only this morning I went to chemist with my prescription and was told I may not get Dr reddys which doctor wrote on prescription for me and onchologist agreed I should stay on. Apparently these are too expensive. I'm waiting to hear from doctor now. Who'd have known there could be so may problems with the meds that follow breast cancer? Good luck, hope you sort it out. 😊🤞
Have been on letrozole for almost 2 years, and have always had the accord brand.
This time, I stupidly didn't check and have been given Crescent. Not sure if this is a consequence, but have not felt very well this week......warm face, hot flushes, stuff joints and generally feeling run down.
Had anyone experienced this brand? Can I go back to the pharmacy and change what I have left?