Letrozole: Hello ladies, I hope that you are all... - My Ovacome

My Ovacome

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Letrozole

Caleda4 profile image

Hello ladies,

I hope that you are all enjoying the great weather we are having this weekend.

Having seen my Oncologist last week, I asked if I would get a maintenance drug when my chemo finishes and if it works obviosly!!! He said yes I would be able to go onto letrozole.

So has anyone here had letrozole,and if so what were the results.

Thank you,x

30 Replies

Good morning Caleda

I have low grade serous and following surgery and chemo I have been taking letrozole since Feb 21. I’ve had some side effects but stuck with it and so far no recurrence 🤞🤞hope all goes well for you.

Happy Easter

Linda

Caleda4 profile image
Caleda4 in reply to Owenmeany

Thank you Linda,I have high grade serous, which was in one fallopian tube,now have raised lymph nodes in chest area. All these drugs are quite a challenge,but feel if they are offered then at least try them. I hope you continue to have success with it.

Hi Caleda: I did a year on letrazole as a maintenance drug, but ultimately found that for me the side effects seriously impacted my quality of life, specifically major joint pain beyond what I had already been experiencing with minor osteoarthritis, combined with fatigue and sleep disruption due to discomfort similar to what I had experienced during chemo, making it hard/impossible to be reasonably active. I was able to function but was frustrated and not enjoying life. I took a 4-month break and felt much better. My onc has now switched me to a different drug (anastrazole) with similar action and I am willing to give it a solid try since there is a possibility I won't be so negatively impacted. It's too early to tell yet since the side effects tend to build over the course of a few months and then MAY subside. Crossing my fingers... But in the end I may just have to choose quality of life as being the most important to me. Definitely have heard that others have had a more positive experience with letrozole than I, so do give it a shot and listen to your body! Deb in Colorado

Caleda4 profile image
Caleda4 in reply to mizpurple

I hope that Anastrasole does not give you the pain endured with letrozole.I had joint pain when I was on the parp Rubraca,but did not attribute it to the drug,but since being off of it the joint pain has gone.

Thank you for responding as it is always interesting how people get on with these drugs.

Hi ive been on letrozole since January 2018, been great for me, there is some side affects same as any drug, but nothing I can't handle, I love a very normal and active life. I hope you have the same results xx

Caleda4 profile image
Caleda4 in reply to wnicola31

Thank you, You have done really well on this and long may it continue that way.Take care.x

wnicola31 profile image
wnicola31 in reply to Caleda4

Thank you. Hoping the same for you. Take care x

Been on it for going on 2 years, so far so good .

That is really good news,and I hope that things continue that way.

Even with a few side affects if it keeps tumors from invading my body this is the remission I will be okay with. Be blessed and believe you are healthy.

Thank you.

Hi my wife was on it but ultimately the side effects...effected her. My understanding is it works better if someone is OR positive. But we have no idea if my wife was or not.That said I think maintenance chemo therapy is a great thing, if not only for some peace of mind....the feeling that you are still being kind of treated helped my wife, rather than everything just stopping. Good luck!

Caleda4 profile image
Caleda4 in reply to thehusband

Hi,I am sorry that your wife had bad side affects I believe you are right about people who are O.R. positive do better on this drug. Like your wife I have no idea whether I am or not. Definitely better to be treated with something,rather than nothing.

I think that could be a question for the Oncologist.

Thanks for responding. Good luck to your wife.

What is OR positive please, is it to do with oestrogen. I havent heard of this before

Caleda4 profile image
Caleda4 in reply to Lizzieanne

Hi Lizzieanne.It is to do with oestrogen. They seem to do tests regarding breast cancer patients regarding this, but not ovarian,from what i have read. I am high grade serous which can be affected by oestrogen levels. I believe this drug works better in in this case.

I hope that you are having a nice Easter. x

SarahBa profile image
SarahBa in reply to Caleda4

Hi, they do also test to see if ovarian cancer is oestrogen receptor positive too. Mine was tested and I am oestrogen receptor positive (ER+).

Caleda4 profile image
Caleda4 in reply to SarahBa

Hi SarahBa,Is this oestrogen receptor test done with a blood test ?

Thank you.

SarahBa profile image
SarahBa in reply to Caleda4

Hi, it should already be contained within your pathology report. Not only did my oncologist tell me my ovarian cancer was ER+ I also asked for a copy of my pathology report and it clearly shows it's ER+.

Perhaps ask your oncologist when you next speak to him or her if they could review your pathology report to see if your cancer is ER+.

Caleda4 profile image
Caleda4 in reply to SarahBa

Tahnk you so much for responding,I really appreciate it.

SarahBa profile image
SarahBa in reply to Caleda4

You're very welcome. Perhaps when you find out if you are ER+ or not you could post a new thread and we can help you again.

Maybe also ask for a copy of your pathology report and post on here as much information as you wish to share but the more information that you share the more we can help you.

This comment now is not related to you but I'm surprised how little some people say in their profile regarding their diagnosis as there are so many different types of ovarian cancer and different stages and grades but I appreciate we're all on our own personal journeys.

Lizzieanne profile image
Lizzieanne in reply to Caleda4

Thanks Caleda. First diagnosis 20 yrs ago they suggested I took HRT for my hot flushes and I didnt want to as I wasnt sure if this was what had triggered my OC. I was then told that it wasnt oestrogen postitive. This is just a vague memory as all these different mutations were not mentioned then. Have loved this glorious weather, done lots in garden. Hope you are enjoying Easter and this weather as well.

Caleda4 profile image
Caleda4 in reply to Lizzieanne

Hi Lizzieanne,Pleased you have enjoyed Easter,being outside and working in your garden. It has been the same for us,although we did take a short trip to the local nursery to get a couple of shrubs to fill gaps.

You have a good memory from 20 years ago,relating to oestrogen. I don't remember anyone mentioning this at that was only 61/2 years ago.

Take care,we must try and beat this cancer.x

Sorry meant to say ER positive, but yes to do with oestrogen.

Hi Caleda4,

I finished treatment October, 2021, CT Scan clear NED. I was put on Anastrozole after a few weeks I couldn't take the side effects I have degenerative arthritis also felt a little edgy I see my Gyno/Onc this week for my 3 month follow-up I am going to aske him about Letrozole

Caleda4 profile image
Caleda4 in reply to Saintgermain

Hi,I hope that you can try something else that works without bad side affects. Take care.

I’ve been on it for 4 years following breast cancer. The side effects were a bit grim at first, muscle and joint pain. I still have hot flushes, but the others did settle down. I have osteoarthritis too, so I’m not sure if that made the joint pain worse.

Caleda4 profile image
Caleda4 in reply to TeddyC

Thank you. I hope that this treatment continues to work for you,as you are doing really well.

Hello caleda I have been on letrozole for nearly 3 years for maintenance . I found the 1st couple of months not very pleasant with night sweats etc . I do have joint pain but manageable and problem with sleeping but take magnesium Citrate which is good for sleep and many other benefits including the heart . I recently had a dexa scan for my bones and waiting for results. SarahB was right in it should be in your pathology report if you are Estrogen positive , that would have been done at the time of your surgery . Good luck with it and hope it goes well lesley x

Hi Caleda4,

I've been on maintenance Letrozole for the past year and a half, following 6 cycles of chemo. I had IDC breast cancer as well as stage 1c ovarian cancer. The Letrozole was recommended to me by my breast oncologist as I was estrogen and progesterone positive. Initially, I found the side effects quite bothersome, especially the hot flashes and feelings of nausea. But those have passed...or I have gotten used to them! But, other than the first 3 months or so, I have had no other issues with the medication.

Wishing you all the very best!

Caleda4 profile image
Caleda4 in reply to Tizzy01

Thank you Tizzy for the information. I am pleased that you have now got over the initial problems with letrozole. Hopefully this drug will work for a long time for you.x

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