Letrozole : I have been told I need to go on... - My Ovacome

My Ovacome

15,784 members18,347 posts

Letrozole

Bella12345678 profile image

I have been told I need to go on Letrozole for post op treatment of low grade serous ovarian cancer. All I can find online is scary reviews which seem to indicate horrible side effects. Anyone got any feedback for me on how you got on with Letrozole? Thanks

21 Replies

I found Letrozole to be a very easy treatment. I had some bone/limb aches when I started it which went away after a few weeks. I didn't have any hot flashes or sleep issues. Letrozole is nothing to be worried about. It's a fairly mild drug, nothing like chemo's. Good luck.

Hi Bella,

I'm low-grade as well, and have been on Letrozole for 10 months now. As I've had it together with continuing Avastin infusions (following surgery and chemo), I'm not entirely sure I can isolate Letrozole's side effects per se.

I'd say this: I've been very tired the past months & easily exhausted, which is exacerbated by trying to keep a fulltime job down (or maybe the other way round ;-) ). Which could or could not be due to Letrozole. Generally, I think I tolerate it quite well e.g. I'm not nauseous (as I had been on Tamoxifen) , and I have no pain. A recent dexa scan came back all clear / green, so my bones are doing fine (good for them). I used to have night sweats and hot flushes in the months following my first surgery. Those have mostly gone by now and occur only occasionally. So I'm happy to keep taking Letrozole, even if it did prove responsible for the tiredness (esp. seeing as my ca125 keeps dropping,, if slowly... last to down 69, from 77 in Mar this year, yay).

What are you specifically worried about? I guess side effects might differ from person to person...

All the best. Maus

Thanks so much for this feedback. The reviews I have read detail chronic joint pain, hot flushes, weight gain, hair thinning and extreme fatigue. So I am relieved to hear your experience!

If you don’t mind me asking what was your status when you started on Letrozole? Had you had surgery already? I have had major surgery and they have removed all cancer, so I guess this is to reduce the chance of it coming back?

Hi Bella. I started Letrozole 3 weeks after the last of 6 carboplatin/paclitaxel chemo doses, following surgery for a recurrence. And up until now, daily Letrozole ran in parallel with 3-weekly Avastin infusions. Avastin is on hold for now, but I continue with Letrozole. No pain, no weight gain, no hair thinning. Just tired. Hope it works well for you. xx. Maus

Hi I am also low grade and had major surgery and finished chemo in May and no evidence of disease. I saw oncologist this week and he would like me to start hormone therapy which I guess is Letrozole. Will find out in a few weeks. I asked him about side effects and he said it varies from person to person like everything so willing to try it . Lesley

Droomfles profile image
Droomfles in reply to Spirit22

Hi Lesley,

I'm also a 'low grader'. Stage 3a. Had my full debulking surgery and chemo. Now Ned and on Letrozole for a month or so..

I have no side effects at all. Maybe a bit more hot flushes but not sure. For the rest feel completely fine! So let's hope it will be the same for you! Good luck!

Spirit22 profile image
Spirit22 in reply to Droomfles

Thank you :) So glad you are doing well ! X

Droomfles profile image
Droomfles in reply to Spirit22

You will do great, I'm sure. Keep up the good spirit like your name ;)

It's not given me any side effects so you can do this! Not trying to worry is my best remedy since all this shit started. You can do it!! X :)

Hi Bella . Yes it’s all rather worrying isn’t it reading about side effects, but it seems some are far more bearable even if you get them !

I’m on month 2 of Letrozole; pains in knees legs shoulders come and go but are not too bad . Fatigue means I go to bed early and read for a couple of hours . My hair has started finally to grow after chemo and pneumonia but apparently hair “ thinning” is another which disappoints me to be honest! . I take lots of vitamins and supplements and have lots of Vega and salads . No dairy , low amounts of meat , and am enjoying life with friends and family so good luck with the Letrozole; I hope it does you good and you stay well.

Denise x

thomas62 profile image
thomas62 in reply to Denizt

Hi Denizt, May I ask what vitamins and supplements you take. Thanks. From another low grader Gwen Xx

Denizt profile image
Denizt in reply to thomas62

hi Thomas, first thing in am I take Turmeric high strength, calcium , vitamin d , Vitamins A B and E, biotin, omega fish oil, selenium and magnesium ! I try to be disciplined but do fail in v low red meat ( choosing fish and chicken ) no dairy, no sugar . I had stage 3 v large breast tumour followed by FEC and Paclitaxol .

Best wishes xx Denise

Reply More

thomas62 profile image
thomas62 in reply to Denizt

Hi Denise

Thanks for this info. It sounds much the same as what I am currently taking. Sugar is my downfall though - must try harder! Gwen Xx

Bella12345678 profile image
Bella12345678 in reply to Denizt

Thanks so much - this is great to hear. If you have time would love to know what supplements you take?

Denizt profile image
Denizt in reply to Bella12345678

Dear Bella , first thing in am I take Turmeric high strength, calcium , vitamin d , Vitamins A B and E, biotin, omega fish oil, selenium and magnesium ! I try to be disciplined but do fail in v low red meat ( choosing fish and chicken ) no dairy, no sugar . I had stage 3 v large breast tumour followed by FEC and Paclitaxol .

Best wishes xx Denise

I have been on Letrozole for 9 months and doing well on it. It is keeping the tumours at bay. The only side effect I have is hot flushes. They do interrupt my sleep but all in all I sleep for a long time. I hope you tolerate it as well as I do. I was a little concerned before I started it but was pleasantly surprised. Good luck with it Julia

Hi Bella, I was one Letrozole for abt. 15/18 months. I had mainly pain in my top left hand quadrant of my body which subsided the longer I was on it. I think my hair might have thinned somwhat but can't remember exactly. I would go on it again if prescribed. Bestwishes. Gwen Xx

I have been taking Letrozole for 14 months with little in the way of side effects. I get some tiredness, which may or may not be linked with it. I have a dexa scan next week to check my bones are still ok, followed by an oncology appointment. I will be very disappointed if they tell me I need to stop taking Letrozole. Di

Hi I’m finding it to be ok , nearly two years now. Slight joint pain but gets better x

I’m low Grade too Bella. Although I stopped Letrozole due to joint pain. Drenching Hot sweats, Low mood and nausea I do know that other women tolerate it better than me. You tend to hear more about those who it caused real issues because that’s what happens with us humans. We tend to voice more about what is affecting us detrimentally but when we are not affected that way we get on with life and not so vocal. Often the side effects improve over time.

I’m giving hormone blockers another chance as I was too ill to continue chemo for my third recurrence. I’m trying Exemestane and so far I’m doing ok.

Give Letrozole a chance is my advice. It is recommended by all the low Grade specialists . Xx

Thank you. I wish you all the best with your journey and really appreciate your comments. Sending positive vibes.

You may also like...