Hi, New to this Forum so hope you don’t find my question a little naive.
My diagnosis is Stage 4 metastatic Breast cancer HERpos. I am currently on Palbociclib and Letrazole. The Letrazole is causing a loss of quality of life.
My question is would losing a significant amount of weight reduce my need for Letrazole.
Look forward to your advice.
Cheers,
Hi, sorry to hear you’re struggling. I came off letrozole because it made me very depressed and caused me pain. I’ve not heard of losing weight to reduce the need for letrozole. Letrozole works to reduce the hormones that the cancer feeds off. I’m now on exemestane and will continue it for another 6 years.
Please, if anyone knows different, post on here. Xxx
No. Letrazole makes you put on weight as I understand things. I did not tolerate this drug at all well and for me quality of life is everything BUT I am Stage 3 so more willing to play the odds. Losing weight is always beneficial but my experience is that you will find it very hard on Letrazole. A bit like going on a SlimFast diet topped up with 6 doughnuts! I am early seventies with an active life and the woebegone lifeless creature I became on Letrazole was not who I am so I gave it up. Suggest you confide in oncologist. Mine had difficulty understanding my choice of quality over longevity so I ended up writing to him.
Hi maybe get some advice from the nurses on the forum either by posting in the Ask our Nurses your questions section or ringing the helpline number to talk to them . Sorry you are finding things so difficult .
0808 800 6000
Hi,
I agree with Jill. Talk with the nurses and/or with your team. Letrozole is a very effective little tablet particularly for hormone positive cancers. I know it has drawbacks/side effects but please don’t give up on it without talking it through. I have been stage 4 for 13 years and Letrozole has kept me basically stable for all of those years. There are probably alternatives if you are suffering. I wish you well
Thank you for your reply.
Losing weight reduces your estrogen, so I am just investigating further.
How are you feeling on exemestane?
Cheers
Hi Julie,
Thank you for your reply. Wow 13 years, that’s fantastic, so happy for you.
Waiting on my next telehealth appt with my Oncologist to see what alternatives there are.
Cheers
Hi Teddy,
Not having trouble with weight gain just looking at the benefits of reducing my estrogen by weight loss.
Cheers,
Apologies. My mistake
Hi susie2cute
I didn’t know this! Thanks for the info. I still find it surprising that I’m still finding new info after my surgery in 2019. Definitely
a further incentive to lose weight!
I’m better on exemestane, especially on Aromasin. The joint pain has fluctuated wildly but I started taking omega-3 oil capsules (vegan ones) about six weeks ago and the improvement is huge.
Please let us know how you get on. Xxx
Hi JulieD
So good to hear that letrozole is keeping you going strong. It underlines how important it is to have options - what suits one may not suit another and vice versa. I agree how important it is to talk to the Breast Care team before making any changes. Xxx
Hi
I am taking Letrozole and tolerating it well only side effects I get is sore joints and obviously feeling tied but is that Letrozole or the ongoing effects of having breast cancer. I have lost a few pounds but I put on weight during chemotherapy l am 63 years old I do some pilates and walk at least 3 miles aday with my spaniel dog. The other thing I do is drink water . Don’t stop taking this tablet until you speak to your oncologist we need these tablets to keep this cancer away.
Hi Susie2cute so sorry to hear you are suffering. Letrozole is usually well tolerated. Its role is to reduce the estrogen your body produces. A lot of the side effects can happen naturally through aging and going through the menopause. Please do talk to the nurses on this forum and your hospital team. You should have a secondary BC clinical nurse specialist (CNS) assigned to you as well as your oncologist.
I had the same diagnosis as you 18 months ago and I’m on a clinical trial (BO41843). So I’m on Palbociclib and the trial is to see if a new drug or Letrozole works better with Palbociclib. I don’t know which I’m taking is the placebo- the new drug or Letrozole. However it’s going well and I’m mostly living my normal life. I’m monitored closely and have regularly appointments and scans. The cancer initially reduced in size and now remains stable. I just thought I’d mention this trial in case of interest to you and if it’s something your hospital offers. It is a big commitment as my appointments are every 4 weeks with scans every 3 months but travel expenses are paid.
I do hope you find a way to improve your quality of life as that’s so important x
Thank you for replying and so glad to hear everything is stable.
I have done a lot of research on this issue and it seems just about all hormone blockers come with side effects. Also obesity seems to be a big no no, so will be putting more effort into my weight loss to see if the side effects lessen plus give me a greater survival percentage. Well this is what my research tells me.
I live in Far North Queensland, Australia so all my accommodation and flights are paid for when I travel to our main city for scans. All my Oncology appointments are by telehealth. It would seem that the Palbociclib/Letrazole combo has met with a lot of success.
Wishing you all the best. xxx
Hi Janey,
Very impressed with the walking. You have just spurred me onto join the gym. Where I live it is Equatorial and way too hot to walk.
I hear what you say about talking to the oncologist and BCN but know what they will say.
My research also tells me to make improving my immune system a top priority along with exercise.
Take care and all the best.
That’s ok Teddy, i loved your addition of the 6 doughnuts.
I turned 76 last month so perhaps I am becoming more conscious of having a quality of life. Wishing you the best of outcomes. xxx
Thank you and wishing you all the best too x
Hi Susie2cute
I understand your comment of quality of life.
I am glad you are joining the gym when I’m out walking or exercises it takes my mind off cancer and talking and meeting other people helps.
All the best for 2024 xxx
Hi Susie2cute
You could always try another AI - Anastrazole or Exemestane which do the same job, Or try a different brand of Letrozole that can change things as well. I did the rounds of all 3 AIs because of the SE’s and because of a change of brand of the Letrozole (my final drug) I had a certain brand specified on my repeat prescription.
So my adv ice is to speak to your oncologist as you have several options instead of just stopping the Letrozole. Cheers