Hi. I haven't posted for some time now. I have had my bilateral mastectomy and finished my chemo. (Thank goodness) I picked up a chest infection in my third round of chemo and ended up in hospital for a week. They thought I had Corona-19 first of all so I was quarantined. It was a very overwhelming experience. I got through it all still with a sense of humour and just pleased to be able to ring that bell. I now face the Hormone therapy - Letrozole and it is the first time I am feeling fearful; I am back at work part time so I am not sure if it is just tiredness but I am feeling very low and really don't want to face any further side effects from anything else. I wonder if it is worth it. I am prepared to give it a go but if I suffer the side effects that I have read you can get I don't think I could do it. Am I the only one who feels like they have had enough? n

Sometimes it’s best not to read the list of side effects when you begin a drug - it just terrifies you and most of them you will probably never get. I started tamoxifen 3 weeks ago and other than being hungrier I don’t feel any different yet. No doubt in time I will but I was already having awful hot flushes and headaches, night sweats, muscle aches etc from the chemo and so it has all just blended in 😊 I don’t know what is causing what anymore. Then there is the afternoon energy collapse where I don’t know how I will get through the evening meal followed by being wide awake for hours during the night. It’s all FUN! I can’t blame any of that on the tamoxifen - I have just had a big year and now 15 radiation treatments in I can add that too. My mother has just finished her 10 years on letrozole and while her bone density has suffered she has always said it didn’t bother her at all as far as side effects go.

Yes, please remember that those of us who have the side effects make the noise, if only to compare notes - those who don't have a problem, mostly don't need to talk about it. And there's no-one saying that you have to continue if you can't manage it. Even with the side effects, I know this is my best defence at the moment and so I am trying what I can to manage it.

What @sister said! Many of us whinge and moan about the side effects of these drugs. It all seems like insult loaded on injury and how much can a koala bear? (Scuse me, my mum says that) Those most impacted have the most to complain about.You won't know how you will cope until you try, and only you can determine what you are prepared to tolerate.Chemo side effects do not just disappear after your last treatment. I've done this twice now, with an without AIs, and the recovery period can be much tougher than you expected. The message from that is not to confuse cause and effect and automatically blame fresh woes on a new drug. Two years ago I was going to give them the flick and let nature take it's course, but have found it possible to continue. For now. Give it a go. Tinker with brands and variations. These things are supposed to give us the best chance of survival. Mxx

The prospect of taking medication that may have unpleasant side effects, for years, is perfectly rational. Your oncologist should explain why it is being recommended and the benefits he/she believes that treatment will provide. You should also ask about their willingness to change medication (different brand or type) if the side effects are severe. Some people get particular side effects from Letrozole, some get different ones, some get almost none. Unfortunately you have to start to find out which category you are in. Never underestimate the impact of what you have been through - tiredness is often a symptom of just being tired of it all. Not necessarily depressed, but definitely not as cheery as you may act. Keep an eye on it, it’s a side effect not often discussed. Best option for letrozole is to get as much information as you can, check your baseline (such as your bone density), start and see how you go. Best wishes.

@Sister you’re absolutely right about that, people who are ok with it don’t need to say anything, so we need to remember that there’s lots of ladies out there who are fine with it. This is a good reminder. You’re also right about trying to manage symptoms as much as possible as it’s pretty much all we have to keep this b*stard disease away. Mon Xx

Fearful of Letrozole - side effects

Afraser
Member
5 years ago
The prospect of taking medication that may have unpleasant side effects, for years, is perfectly rational. Your oncologist should explain why it is being recommended and the benefits he/she believes that treatment will provide. You should also ask about their willingness to change medication (different brand or type) if the side effects are severe. Some people get particular side effects from Letrozole, some get different ones, some get almost none. Unfortunately you have to start to find out which category you are in. Never underestimate the impact of what you have been through - tiredness is often a symptom of just being tired of it all. Not necessarily depressed, but definitely not as cheery as you may act. Keep an eye on it, it’s a side effect not often discussed. Best option for letrozole is to get as much information as you can, check your baseline (such as your bone density), start and see how you go. Best wishes.
Karma03
Member
5 years ago
Thank you Afraser for your encouraging words. I think l am expecting too much of myself and l need to remember as you said that my body has been through a lot over the past 6 months and it will take time to recover.
FLClover
Member
5 years ago
Hello, you are def not the only one who feels like that. I’ve also had a double mastectomy, had a Zoladex injection, going through radiation and need to start Letrozole soon. I’m terrified of the side effects too but trying to stay positive. As others have said, maybe you won’t get severe ones, and if you do, you can always ask to change. That’s my plan anyway. But I’m def feeling more tired than I used to. Good luck xx
arpie
Member
5 years ago
Be gentle on yourself @Karma03 ... and keep a diary on any side effects you feel. As @Afraser said .. not everyone gets all the side effects - some get none!

Sorry to hear you were so crook during chemo! Definitely No fun in isolation.

Any AIs that we take are to reduce the chance of recurrence, so your Onc should have given you the percentages re the benefits of taking them. My own percentages were pretty low but I still chose to go with the AIs as “insurance”. And you CAN swap between the different AIs as well. I started on Letrozole and now on Arimidex.

take care, all the best xxx
ddon
Member
5 years ago
Sometimes it’s best not to read the list of side effects when you begin a drug - it just terrifies you and most of them you will probably never get. I started tamoxifen 3 weeks ago and other than being hungrier I don’t feel any different yet. No doubt in time I will but I was already having awful hot flushes and headaches, night sweats, muscle aches etc from the chemo and so it has all just blended in 😊 I don’t know what is causing what anymore. Then there is the afternoon energy collapse where I don’t know how I will get through the evening meal followed by being wide awake for hours during the night. It’s all FUN! I can’t blame any of that on the tamoxifen - I have just had a big year and now 15 radiation treatments in I can add that too.
My mother has just finished her 10 years on letrozole and while her bone density has suffered she has always said it didn’t bother her at all as far as side effects go.
FLClover
Member
5 years ago
@ddon that sounds very promising about your mother! It’s good to read about stories like that. And you’re right that we shouldn’t be thinking about side effects too much before we start. As for the arvo energy collapse then the peak during the night, it’s my life story 🙄😆 xx
Sister
Member
5 years ago
Yes, please remember that those of us who have the side effects make the noise, if only to compare notes - those who don't have a problem, mostly don't need to talk about it. And there's no-one saying that you have to continue if you can't manage it. Even with the side effects, I know this is my best defence at the moment and so I am trying what I can to manage it.
FLClover
Member
5 years ago
@Sister you’re absolutely right about that, people who are ok with it don’t need to say anything, so we need to remember that there’s lots of ladies out there who are fine with it. This is a good reminder. You’re also right about trying to manage symptoms as much as possible as it’s pretty much all we have to keep this b*stard disease away.
Mon Xx
iserbrown
Member
5 years ago
@Karma03
Please don't be fearful of side effects.
At present your body is in fatigue mode after all the treatment to date, not unusual! Fatigue was a major factor for me and it is only as time has passed that my body has adjusted and I am in a better place mentally and physically along with making a few changes along the way.
It is not always wise to read the side effects prior to taking as that is where the fear builds and as mentioned above those with side effects make noise as they look for others with similar and look for support on how to combat them.
You maybe one of those that has minimal and maybe none and just sail through.
The options are there with consultation with your Oncologist to change medications if the side effects are a problem.
Have you seen the BCNA booklet on Hormone Therapy?
There are links within this link that hopefully can give you a better understanding of this next phase of treatment

https://www.bcna.org.au/understanding-breast-cancer/treatment/hormone-therapy/

Best wishes
Take care
Karma03
Member
5 years ago
Such very wise words. Thankyou