Letrozole - aches and pains continue
Last year I was switched from Tamoxifen to Letrozole. At first I was feeling okay on the Letrozole but then I had a post menopausal heavy bleed (thats a whole other story), so had a medication holid...
Forum Discussion
I started Letrozole 5 wks ago. Rheumatism is much worse but tolerable with a lot of walking & major increase in anti-inflammatories. I've had anxiety/depression for years but Letrazole seems to be making it much worse. I'm often very anxious in the mornings and this can sometimes go away with exercise or later in the day. However it seems this anxiety now continues into the evenings when previously I was able to switch off at night. I'm talking to my oncologist but I know his agenda is to keep me on hormone therapy. Is anyone else feeling this increase in anxiety? I've got other side effects (thrush in mouth, dry vagina) but it's the anxiety that might be the deal breaker. Living like this for 5-10 years is a horrible prospect and my GP said Letrozole has the least side effects so I'm reluctant to try others.
I did surgery & radiotherapy but refused chemo and I'm struggling with this decision. I was quite sure when I said no to chemo but this decision is harder to make. I'm sure my constant anxiety isn't helping me make this decision! (Grade 2 tumour that had spread to lymph nodes and Endopredict results said 5-10% chance it will return without chemo and endocrine therapy).
I'm new to forums so not sure if I've just made a new post or reply here.
Thanks Tri.
I really want to find others who've made the decision I have made to stop hormone blockers. I am still seeing and talking to my oncologist, keeping the door & communication open.
My oncologist started me on Exemestane and I had 3 very bad days of nausea and stopped. I'm waiting for him to respond and know he will suggest I try one more before he gives me his "blessing" to discontinue.
I'd really like to find other women who have decided not to proceed with hormone blockers. Is anyone out there? If so pls feel free to send me a private message. I was fine with my decision at first but anxiety is starting to rear it's ugly head and it would be so nice to find a support group of some sort. I have actually met at least 5 women who stopped hormone blocking therapy, one was 15 years ago and she is still cancer free. Many of these women don't actually want to talk a lot about their decision past their initial conversation. It triggers them and I understand this. They have made their decision and want to move on with their lives. Everyone makes their own decision and I'm 99% sure I'll stick with mine. I'm still in early days and I know I won't want to talk about this for ever...but right now I do.
I applaud those of you who want to continue and push past any side effects.... but I'm not in that camp. If it was 10 weeks or maybe even 10 months of treatment I would consider this but 10 years on something that has serious side effects to my quality of life is not an option for me.
I know the cancer may come back one day...but I also know from women I've met that it may not.
If anyone else has made (or is trying to make the choice I've made I'd really love to connect somehow.
HiJosephineB1 you raise issues that we really need to address. I agree whether or not to take endocrine therapy ((AIs) is such a personal choice.
One thing I feel a bit surprised about is the absence of qualitative data and even quantitative data - but if the data is there I’d like to understand it better, so I can make an informed decision.
I think there’s something we might be able to learn from this new initiative to record the data about people living with metastatic cancer (which BCNA has successfully advocated for).
It seems odd to me that the national data isn’t there to delve a bit deeper into the long term outcomes and success of treatment decisions - whether it’s radiation, chemo or AI - in preventing cancer recurrence or metastases beyond a five year survivorship benchmark.In my case I am staying on Letrozole for now and I have to accept that it’s actually no guarantee that I won’t have recurrence.
I understand what you’re saying about quality of life and the decision you’ll make and no doubt reassess from time to time. Go well.
Hi!
I was on letrazole from Feb this year and stopped taking it three weeks ago as I fell into a deep, deep depression (as in, I wanted to leave my husband and kids and was very , very low). I have no previous anxiety or depression. It took around 10/11 days to feel like myself - what a difference!!
I am now one week into Exemestane. So far so good - but it is early days.
oh and the joint pain is insane. In.Sane.
Your post came up in a reply toDianeD … I am sorry this sounds like the Aromatase Inhibitor (AI ) Letrozole has been a rough ride for you. My situation is a bit different as I have a slightly different breast cancer type (Triple Positive) and had chemo and immunotherap, but I am also taking Letrozole. The choice whether to continue is one that features in a very good BCNA webcast but if you want to continue I hope your oncologist can discuss the options of trying a different brand with you. With great respect to your GP, I imagine the oncologist will have a broader experience of different AI’s. From other posts by BCNA network members I have heard members say they’ve tried different ones and have found some suit them better than others, and there’s no real hierarchy, it just seems to depend on the individual.
I hope you can get in touch with the BCNA helpline who might also help direct you to some resources to manage the anxiety you’re experiencing. It seems more than a few people reflect back on their choices and wonder if they might do things differently so you are among friends on the network. Sending you positive vibes as you navigate this space.
