This is my first post but ive actively read lots of posts on here during my treatment.
I have just had my 5th annual mammogram & it was thankfully all clear. I have been advised that my treatment team are stopping my Letrozole as i have completed 5 years.
I feel rather emotional although relieved by this news. Can anyone advise me what its like coming off? Ive been advised no need to taper i can just stop. Have the side effects such as, bone aches, fatigue, thinning hair, anxiety, vaginal dryness improved at all on stopping. Im hoping they will . Im 58 years old.
Thank you for this forum its been a great support to me through my treatment to know im not alone with this cancer journey and i wish everyone the very best with their treatment.
Congratulations @Alfiesgrandma on completing the five years on Letrozole, it’s more than I could do. I did three and a half years and gained agreement from the head of oncology to stop due to side effects. I luckily did not have the joint and muscle pain and had good DEXA scans but mine were cognitive - brain fog, low mood, no concentration and poor sleep. I was concerned that I may slip in to dementia as I am now 70 even though there is no proven causal like between the two, mainly due to the lack of research. I have been off Letrozole for about four months now and feel much more like my old self. I don’t have the smarts that I used to have but everything is much less fatiguing and gloomy so I’d say the SE do diminish over time. I hope others who did have the joint pain are along to reassure you soon but I’m here to say I’m glad I’m off it and to wish you a long, happy and cancer-free life.
Thank you so much for asking these questions. I’m in exactly the same position and it’s a bitter sweet moment. I’m also thinking about paying privately for a yearly mammogram rather than wait another 3 years for my next one.
You must be having mixed feelings and huge congratulations on finishing your treatment. This will be me this time next year and I’m already wondering how it will feel. I’ve had a mix, 2 years Tamoxifen, 3 Letrozole, one year to go! I actually want to take Letrozole for longer but that’s a conversation for next year.
Thank you for taking time to reply & for your kind wishes, i also have brain fog & low mood but i wasnt sure if this was the Letrozole or general menopause. Its hard to know but hopefully once im off the meds i will know one way or the other.
I was 13 years past menopause when I started Letrozole so I have absolutely no doubt that’s what caused mine cognitive decline. As you say, you’ll soon know and I hope it clears up for you. I forgot to say I just stopped it, didn’t do a phase out at all and the oncologist never suggested it when we spoke.
@Alfiesgrandma, Congratulations to you, a great achievement for getting this far together with 5 years on Letrazole…. I only managed 3 years.
I think when our treatment comes to a close, we lose our comfort blanket, and start to worry what’s next, however this site is always available to unload and worries you may have. Also I found my breast cancer nurse was still be available to me, if I had any concerns.
Wishing you, well with health and happiness going forward.
Thank you Tili, i agree i feel relieved but also my safety net has now gone . I just need to trust that it’s over & look forwards positively! Just easier said than done x
Thank you for posting this question. I am in the same position, as have just completed five years on Letrozole and have just been advised as of last week that I no longer have to take it. I am therefore hoping that the brain fog and other side effects will start to disappear over time, so has been interesting reading these replies and also congratulations to @Alfiesgrandma for completing the five years. I hope the side effects do indeed improve.
Well done to you AMWG for completing 5 years too! I know from this forum that quite a few ladies dont manage it as the side effects can affect some more severely than others.
I wish you well going forwards and lets hope we see some improvement
Hello Frances, this is Frances! I’m just at the start of my Letrozole journey, so no reallyclear view on side effects yet. Interested to see you want to stay on it. Does that mean you haven’t had serious side effects, or have been able to manage them well?
Hope you’re feeling okay on Letrozole. I’ve been on it a while and yes, I do have side affects, but they’ve been manageable and I try not to dwell on them too much. I don’t sleep well now, usually have to get up a couple of times a night to use the loo, have joint pain, dry itchy skin, hair loss, heart palpitations, weight gain and all the other well documented symptoms that we get in menopause. I’ve been pretty tired for two years and some side affects have really impacted.
Despite this I never miss a dose because I see them as my safety net. My BC was found early and I’m forever grateful. They told me originally that taking hormone therapy wasn’t going to change my outcomes much. My Predict score offered up stats of about 2% benefit over 10 years which was pretty low. It was still beneficial and protective to take them so I always do.
I started on Tamoxifen for 2 years and they gave me Letrozole for 3. I want to try to take it for longer just to feel safe. They probably won’t let me and say there’s no need as five years of hormone therapy is very protective but I’m going to find it tough to finish. I had a mastectomy but that’s it. No other treatment so, as I say, it’s my safety net.
It’s a bit unnerving reading about so many people who don’t finish the prescribed course because of side effects, especially for people just starting. Everyone is different but many of us tolerate it well. Of course it’s right to stop for some people if they are miserable, but I feel as in so many things in life, being positive and pressing on can be very beneficial. I just take a view that my oncoplastic breast surgeon told me to take them, so I do. I trust their advice.
I have also been prescribed Letrozol and after almost 6 months on it I can say that there are only minor side effects so far, mainly headaches in the morning and numbness in my hands/fingers also in the mornings. I can deal with these issues as long as the treatment is working well and killing the cancer cells, which it is! I have mets in my spine so I take a calcium/Vit D pill everyday as well, and I have infusions of Zometa once every 3 months to strengthen my bones, which also caused headaches but I again can handle that if it prevents bone breakage. I think a positive attitude as you mentioned is one of the most important things. I have read very positive stories on the forums about survival rates, with people being fit and well 20 or more years after diagnosis. A woman I am friendly with was diagnosed 16 years ago and is doing very well to this day. I hope to stay on Letrozol for as long as necessary, my oncologist has mentioned 5 years, and I will have CT scans every 3 months presently to check how its working, but there has been significant shrinkage of the tumour and the bone mets so far which is great.
. Im 58 years old.
