Hi
I’m sorry but need to rant. I was on letrozole from Sun pharma, no issues, so I wanted to keep this brand but only accord is available everywhere. They told me just to take it and see. I feel like guinea pig. Anyone can help? Is accord as bad as it looks like on Internet?
I am on 150mg abemaciclib twice a day and had a breakdown before starting it because of all horror stories online. I have no side effects - two months in.
Thank you if you can help
K
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Hi,
I also found that various brands suited me better…Accord being one of them the Sun brand and another (can’t remember which) made me feel really odd, but I was ok with Accord and Teva.
There were times when I was told that ‘we can’t get your preferred brand, so you’ll have to have this one. They’re all the same’! They’re not…to me anyway.
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Accord seems to be a preferred brand of some people- I’m ok with both that and Sun pharma, but I think Amarox gives me sore mouth, cracked lips etc…
I agree with what you said about abemaciclib, I was dreading it, but once the diarrhoea settled I was ok.
I’m not completely symptom free, but also I’m not sure what’s due to Letrozole and what to abemaciclib. A bit tired but no really difficult symptoms and blood tests ok.
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Hi
Strange isn’t it….I have amarox and not really had noticeable side effects!
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@suebond88 @cynoptimistic @bigpickle
Thank you all
I guess I have no other option but try it. Unless I can find sun pharma in 5 days😏
What makes me angry is dismissive approach of doctors. Yes, I know - they are saving our lives but I must say - I never meet such cold and “Dr. House” type of doctors as oncologists. I feel I’m being talked at, not talk to.
The same dismissal I had about tinnitus. Answer I’ve got was “It is not on side effects list”. I went to gp and requested referral to specialist and actually she said that majority of her patients are cancer patients, as it is very common due to hormonal rapid change /drop.
Tbh I have not a clue what is letrozole, what is abemaciclib or maybe - metastatis. I am slowly losing my mind. I am stage 3 C ILC ,grade 2, with 19 lymph nodes with metastatis and extranodal spread. I am more than scared and oncologist told me I’ll have no more scans or even blood tests of cancer markers until I will get new symptoms… But when I went with suspicious spot close to mastectomy scar - he just ignored it. He didn’t even examined it. I had to go through cancer nurse to get appointment with oncology surgeon. Time is ticking - I have appointment after 3 months of finding this spot!!!
I think brand of letrozole should be on the bottom of my worry list😢
I’m so done with all of it.
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I’ve been on letrozole for over a year now, the first six months a variety of brands (I didn’t know different brands caused different side effects). I had every side effect going and seriously wanted to stop but then I realised the only time I felt fine was when I was on Sun brand for a month. For the next four months I was only dispensed Sun brand and I was absolutely fine, then in January I couldn’t get Sun and have been on Accord since. Lots of the side effects are back and I feel I am existing not living. As I’m 79 tomorrow I’m not prepared to continue with them, my GP has contacted Oncology and I have an appointment on the 27th to discuss this. Oncology originally discharged me to my GP’s care at my one and only appointment, which my GP says is wrong, they are the knowledgeable ones and should check on their patients. If you have also been discharged by oncology I’d suggest you either contact your breast cancer nurse or preferably see your GP and get them to sort this out for you. We shouldn’t be just left. Hope you can get it sorted out x
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I am toss around all the time. From onco to gp. Gp is saying that I should go to oncologist as it is cancer treatment. Oncology is sending me back to GP. It is a joke. I will try to contact gp again tomorrow. If this won’t work, I will have no choice but take accord one. From what I gather it is Russian roulette game - might be OK. Lady I know she couldn’t tolerate sun at all.
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I started on sun approx 2 years ago and read on these chats about the side effects and staying to one brand. With the chats I was reading Accord seemed the better - so I asked my pharmacy for them as I suited them better. After about 3 months they were a bit funny and said we can’t get them and I said I can’t take others as have side effects. Ok they said we will have to order these in. But you will have to get your GP to state you can only have that brand. So I did and ever since don’t have a problem (touch wood) getting them. Hope this helps re brands x
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Thank you for replying😊
I am on Sun for few months and I have no major side effects. Tinnitus, morning stiffness and a bit of shoulder problem.
I don’t know if I should try Accord or just stick with what I know?
Problem is that I’m a bit of coward 
Afraid to try new brand, silly me - and that means I don’t have a frame of reference. I simply don’t know - maybe Accord will be OK for me???
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Hi, My pharmacy has said 28 Accord not available in the short term but 14 pack is. So they are trying to get it in for me. I keep a month in reserve as never guaranteed!
I found sticking to one brand was helpful…even though lots of aches and pains…but guess I’d have them anyway as Stage 4 metastatic breast cancer in spine, neck, shoulder, femur and lungs.
I attend a mobility/ exercise class as I had to give up pilates as cannot put pressure on my wrists/hands. Sadly badminton and running around in team sports is out due to the fact I can’t afford to fall over and break anything.
Speaking to a physio today about knee pain ( had to stop line dancing for fun) he recommended a series of exercises to strengthen supporting muscles. Certainly fighting through any pain barrier ((excruciating at times) and exercising is my goal to keep mobile and do fun things whilst I can.
Keep going and get physio, oncology advice…is my suggestion/ aim. Go with what ever brand suits you as we all react differently.
Thanks for sharing though as it helps others.
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I’ve rather given up on trying to sort out what is letrozole and what is down to abemaciclib. I have tinnitus but not badly and I’m pretty sure I didn’t in the 5 months i was taking letrozole before the abemaciclib. I did have bad tinnitus particularly in the week after each E/C chemo, but fairly constantly but not quite so bad in the period of the 12 weekly paclitaxels. I was free of it from late November 2023 through to end April 2024 while I had lymph node clearance, started letrozole and had my radiotherapy.
I’m a year into abemaciclib now, so in a year’s time will take more interest in the detail of how I feel as the letrozole will go on beyond that for some years and be my only prescription. At present I’m sort of glad to feel fairly ok/not too bad/a bit tired. I am free of chronic aches and could be doing more exercise than I currently do. Aching that wouldn’t go away after a bit of rest/movement/pain relief would certainly get me down.
Since becoming aware of issues that people have with different brands of letrozole I am taking some interest in how I feel with different brands, but after 16 months I haven’t found any dramatic difference. At least there’s only one brand of abemaciclib - until it comes out of patent in 2029! Then there’ll be decisions about both brand and dosage! 
All the best xx
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Hi, I’ve been on Anastrozole for 5 months and have had two brands in this time - Amarox and Mylan. I can’t say Ive noticed any difference but now have a prescription for Sun. Never had Accord. It seems chemists just get the cheapest brand and I don’t fancy getting a different brand every month. I only get prescribed a month at a time - is that the norm ? Best wishes to you all.
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Hi
I’m on Letrozole and I only get a month at a time, which seems strange when I’m on it for 10years, surely this just causes more admin for the drs:woman_shrugging:
Hope your doing well
Xx
I get 2 months at a time…same brand.
My Gp practice just sends the prescription to my Pharmacy and they message me when ready for pickup.
Hi, I’m on it for 10 years as well and agree it seems strange just to get one month at a time, especially when I can get 2 months of my blood pressure tablets - between me and my husband we always seem to be ordering/collecting medication ! . I think I’ll have a word at Drs to see if I can get 2 months to bring it all in some order.
Doing OK so far thank you and hope you are on yours.
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Thanks for your reply. I think I will ask at Drs for 2 months as I already get 2 months for other long-term medication. Hopefully will also get 2 months of the same brand as well!
Best wishes to you.
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Im on anastrazole. Accord made me feel generally unwell. Sun is ok, so are Amorex, Crescent. I found a helpful pharmacy who told me they can’t order a specific brand from the warehouse, but they have just kept ordering over a few days then hopefully one that suits me comes in. Talk to all your local pharmacies until you find an understanding one.
Thanks for your reply. So many different brands ! I’ll certainly be more aware of what is being prescribed from now on.
After seeing my oncologist I’m even more confused😁 she suggested anastrozole instead of letrozole. Apparently anastrozole is more gentle on joints. I’m not sure if I am up for more experimenting in medication area. My poor brain can’t keep up with hormones anymore.
I’m very indecisive by nature, choosing toilet paper in a shop can take me more than 5 minutes. How can I decide on medical nuances?
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My letrozole prescription is for two months at a time. Plus because of the difficulties in getting the brand that suits me best (sun) she gave me an extra 2 months worth so I can give my extremely helpful pharmacy a chance to get that brand without a panic. It still doesn’t always help, currently Sun brand is proving very difficult to get but it certainly has made my life easier. You can only ask your gp, they can’t shoot you for asking.
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