Silver6, I think you started this as a survey some time ago, and I gave my ideas about it ages ago. Have you managed to collate any information or results yet?
I am still on Letrozole and have another 4 and a half years to go. Still have the same side effects as I mentioned before, but intend to keep on taking the tablet in the hope it keeps the cancer away. Take care everyone. Hugs to all of you whether on Letrozole or not.
Sunshine21.
3 Likes
Brand ā¦Accord x2.5ā¦take at 6pm after dinner.
I have been taking Letrazole coming up for 20 months now, still another 5yrs to go.
My side effects include finger joint stiffness, aching shoulder, difficulty opening lids and not a lot of body strength. But the worst one is the soles of my feet ache after siting and I need to hobble until it comes ok. First thing in the morning is bad too ā¦stretching does help but comes back as soon as I sit, even for a short time.
I sleep ok some nights other nights not so good.
Iāve also gained a stone in weight and I now have high cholesterol tooā¦
Will continue to put up with all of the above in the hope it keeps Cancer awayšš» Going to ask my GP for a blood test to make sure Letrazole is doing its job.
1 Like
I have high blood pressure and high cholesterol as well now. That might be normal at 69 though.
Old bird Seagulls
1 Like
Hi Yvonne, I hope youāre well today.
I was diagnosed with Lobular Breast Cancer stage 4 earlier this year, it had spread to my bones sadly.
I take Letrozole & Ribociclib & the side effects are really tough arenāt they. The worst for me being the neck pain & jaw pain, just awful. Then thereās the exhaustion, severe hot flushes, joint pains, low mood, hair loss, eyelashes tooā¦I could go on but thankfully itās saving our lives! Which Iām so so thankful for š©·
1 Like
Iāve been on Letrozole for 18 months with a short break in the middle. I take two AdCal tablets every day to counteract the effects of Letrozole on the bones. A few days ago I had an annual check up at my surgery and asked if they would add a calcium check to the blood tests. Today they rang to say stop taking the Adcal and have another blood test in two weeks time. The calcium in my blood is too high and having too much calcium in your blood can be just as bad as not having enough.
I just thought Iād mention it in case other people like me are not being checked regularly.
Its so individual isnāt it? I found Sun Pharma Letrazole was better for me than other brands and it does say that on my notes but the pharmacist hasnāt been able to get hold of it for over a year and I now take whatever brand they can get.
Just taken a six week holiday from Letrazole during which the stiffness in my hands has reduced significantly but I am going back to it as of this week, I was offered a change to one of the other drugs but its clear there are no guarantees the alternative would suit me any better and after three and a half out of five years done Iāve decided to stick with what I know.
The biggest help with joint pain for me has been 3 PT sessions ( including weight training) and a physio session in the gym each week and very gradually losing weight ( I mean about a pound a month!)
1 Like
i have started suffering with the feet!! i have been on letrazole for 11 months and have joint pain in elbows and fingers being the worst. took a 4 week break and it didnt get better so carried on. wonder if anyone else suffers with the feet thing. mine are so painful all day and when i am driving, sitting etc they throb.
2 Likes
Hello, Iām new to this thread so many apologies if I am repeating anything already asked.
I have been prescribed Letrozole for 5 years starting in September. The first brand I had was Cipla which was okay, just bad night sweats. I was then given the Amarox brand when the prescription was renewed and the pharmacist insisted there would be no change. Well that was a load of rubbish! Within 2 days my hands started swelling and all joints hurt like crazy. By day 5 my back was in constant spasm and I was in a lot of pain. After a week I could barely move and needed help getting in and out of bed and even needed rescuing from the bath. The BCNs told me to keep taking the tablets but I refused as I was in so much pain so they recommended a short break to get them out of my system and start with a new brand. Iām finally out of pain and oncologist says that I really do need to take the tablets to reduce reoccurrence. I have been the Accord brand here already as the prescription had already been filled but Iām terrified of taking them in case it happens again.
Have any of you used any of these brands and if so were any of them more tolerable than the others? Oncologist is happy to request Cipla only on my notes but Iām so unsure of what to do.
Any advice will be greatly received! Thank you for taking the time to read the message.
Charlotte x
Hi Lottie 73, I stated on Letrazole back in September 2019 after a mastectomy, lymph node clearance, chemo and radiotheraphy. I think I have had most but not all brands and they all seem to have side effects. Different brands seem to suit and or affect people differently. My husband started checking all the ingredients of the different bands as I had them and because he loves his computer, made a spread sheet of brands and ingredients and how they affected me personally. I can only tell you that with the Cipla brand I had terrible side affects unlike you. However I find Accord, Amarox and Glenmark are best for me (although these brands do all affect my joints badly) these three brands also have the same ingredients which it may be helpful for you to know. The information leaflet in each pack tells you the ingredients. I have been put on Letrozole for 10 years. Six years so far, another four to go. I am so looking forward to finishing this little tablet in September 2029 but am continuing with it as I really hope it will keep my breast cancer away so I can continue seeing my four grandchildren grow up. I am 74. I really wish you well and hope you find a brand you can tolerate. Big hugs to all you wonderful ladies. Take care. Sunshine 21.
.
3 Likes
Hi @sunshine21 thank you so much for your reply. It was very interesting to find out that the ingredients were the same in the Amarox and the Accord so I decided against taking the Accord in case the same happened again. Just waiting for the new prescription to be fulfilled to see which one Iām given next! Many thank to your hubby for all his research too, that has come in very useful!!
I am just starting out on the Letrozole journey and will need to take it for 5 years so hopefully Iāll get into a routine soon 
I hope you have a lovely Christmas with your grandchildren. Iām 52 so not yet ready for grandkids but would be lovely to have them one day.
Sending love
Charlotte x
2 Likes
Hi, Glad I could help a bit. Hope your Letrozole journey goes well. You take care. Big hugs to all the wonderful people on this site. Hope everyone enjoys Christmas. Sending love to all. Sunshine 21.
Well done you for doing this.
a. I take Accord and have stuck with that brand.
b. Yes, had side effects. Mainly digestive (constipation which I manage with prescribed Fybogel) and osteoporosis for which I get yearly IV infusions of Zolondronic acid and daily Adcal. Also prescribed statins because it can raise your cholesterol. All monitored by regular GP blood tests.
c. Dose for everyone seems to be 2.5.
d. Will have been on it for 5 years in May 2025 and then will discuss coming off with oncologist although v. nervous about doing so as it gives 30% protection against it coming back. After 5 years that drops to 10%. Unfortunately now having tests for bowel/stomach cancer.
e. I take it sometime in the early evening after meal.
Hope this helps. It really is a personal choice. Xx
2 Likes
I changed from Tamoxifen mainly because of leg pain ( joints, ligaments, just like extreme stiffness after sport), but Letrozole isnāt any better, except now hot flushes much less. Legs cramps at night terrible, despite magnesium. As Iām 77, I donāt think my body would be producing much ostrogen in a natural state anyway. My doctor agrees to possibly stopping in the summer after 2 years.
1 Like
Dear Crete
I am sorry to hear about tests for stomach cancer. I hope they come out negative
Seagulls
1 Like
This is my 2nd time in this club no-one wants to be in so Iāve previously had chemo and done 10 years on Tamoxifen 2009-2019 aged 43-53 therefore had chemically induced menopause.
a. Accord
b. Yes; insomnia (magnesium butter on legs seems to be helping), v dry itchy skin (Epimax on prescription), slight hair loss, dry lady bits so loss of libido.
Mood was low and BP high hence surgeon suggested a 1 month break to see if it had any effect but I now think that was due to stress. Feel better in myself now apart from the niggles above.
c. 2.5mg
d. 7 months with a month break Nov 25
e. First thing
BTW Iāve just started on Indapamide for high BP which was making me nauseous. The pharmacist advised taking it with food which has worked for me so might be worth considering? X
1 Like
Update after 3 different brands and over 9 months
1st brand Sun Pharma - letrozole - 2.5mg - side effects NONE - didnāt know what all the fuss was about.
2nd Brand Accord - letrozole - 2.5mg side effects MASSIVE joint pain in my hips and nausea followed by severe sense of humour failure. Twigged what all the fuss was about.
Walked around 10 local pharmacies to see who stocked Sun Pharma brand - none did!
3rd Brand Cipla - Letrzole - 2.5mg - side effects, definitely not as bad as Accord but definitely not as good as Sun Pharma brand- still hip pain and nausea - sense of humour improving.
Main learning - its the Brand thatās key and if men had to go through this for years this would be a completely different story!
4 Likes
Hi Yvonne I hope youāre feeling okay today.
I just read your message from a little while ago now but just thought Iād type back regarding being on the awful Letrozole & Ribociclib for stage 4 breast cancer.
I was diagnosed last February just after my 52nd birthday with Lobular Breast Cancer & then in May/June I was told it had spread to my bones.
How do you cope/manage on the medications? Iām having to have a little break from them both because Iām just not coping with the sheer exhaustion & brain fog. Itās affecting my day to day life so much I just canāt function right. The other day I thought 5 was a lower number than 2!! I struggle to think straight & function normally. I know I have to take these medications to stay alive & Iām grateful for them but my goodness itās tough going!!
This is going to be one really tough ride sadly
I wish you all the very best.
2 Likes
Hi, I seem to be prescribed a different brand every month unfortunately. Iām just coming to the end of a box of Rudipharm Ltd Letrozole & the box I collected yesterday is SunPharma Letrozole. Iām sure it doesnāt help us with the excruciating side effects getting different brands every 28 days!! XX
2 Likes
That is a good point. Why canāt they prescribe 6 months or even 3 at the same time!
1 Like
Letrozole affects everyone differently, so gathering experiences on brand, dose, timing, and side effects could really help others make informed choices.