Letrozole

[Robbo16]

Hello Ladies,

Looking for some advice and any feedback on your experience of Letrozole.

I am stage 3 HGS and have just finished my chemo and underwent debaulking surgery.

My Oncologist previously told me I would not eligible for any maintenance drugs but on my last call with him I questioned this again whereupon he looked at my records and said oh yes you are Estrogen Receptor Positive so would benefit from hormone therapy and we would discuss on our next call. I checked my GP records and he has sent them a letter saying as I had a 'Quick Score?' of 8 I would benefit from Letrozole. I would appreciate any feedback / knowledge of Letrozole, side effects etc. There is some information online but all in the context of Breast Cancer.

Additionally does anyone know what this Quick Score of 8 represents?

Thanks all and lots of love

Linda x

[Spirit22]

Hello Linda

I have been on letrozole for about 8 months now for maintenance. Previously was on tamoxifen for a year which is also a estrogen blocker , but found the the side effects difficult . I find letrozole easier . 1st few months I had bone pain , night sweats , hot flushes and oncologist said it will improve after 6 months which it has . Everyone is different however and think you have to find what suits you .

I am also estrogen positive . I don’t know what a quick score of 8 is , maybe one of the other ladies will know

Anyway I wish you luck with letrozole and hope you get on ok with it

Very best wishes take care Lesley Xx

[MaldivesFan]

Hi Linda, I am a patient but my expertise is also in cancer research. The Quick Score is the result from a laboratory test on a cancer sample. This type of test is called immunohistochemistry (IHC) which is used to look at which proteins are being expressed by the cancer cells. The assessment of hormone receptors called oestrogen receptor (ER) and progesterone receptor (PR) is important because a high level of one/both of these can make patients eligible for hormone therapy (anti-endocrine therapy) using targeted agents such as letrozole.

The test indicates how many cells in the cancer are expressing these hormones, but also indicates the level (strength) of expression. The Quick Score is a scale from 1-8 to describe that result. Without going into more detail, the key points of the scale are essentially:

If there are no cells detected that show any expression of a hormone receptor then the Quick Score would be 0.

If the majority of cells show expression of the receptors, AND the expression is at a high level, then the Quick Score would be 8.

So, a score of 8 is a result that would definitely allow the clinical team to consider the use of letrozole.

I hope that helps?

[Robbo16 in reply to MaldivesFan]

Thank you that is really helpful x

[thomas62 in reply to MaldivesFan]

Hi MaldivesFan,Thanks for the explanation of the Quick Score and it was very easy to understand.

[sticky3006 in reply to MaldivesFan]

Hi MaldivesFan. That’s a great explaination of something I’ve never heard of! Can I ask why this test isn’t carried out on all samples? Many thanks, sticky3006

[MaldivesFan in reply to sticky3006]

Hi sticky3006, for patients with breast cancer these are routine biomarker tests. The biopsy and/or surgical resection samples containing cancer tissue are tested in the Histopathology lab using immunohistochemistry (IHC) to detect the expression of ER, PR and HER2. These are all hormone receptors which may drive the “growth” of the cancer. In breast cancer the results of these 3 biomarkers are used to determine prognosis according to a “molecular subtype”. In addition the results can be used to determine the most appropriate targeted therapy for that particular patient. For example, breast cancer patients who have a tumour that is HER2 positive may be eligible for Herceptin treatment. If their tumour is ER positive then they could receive tamoxifen, letrozole, exemestane etc as these treatments target the ER pathway.

In ovarian cancer generally, I don’t think that IHC to detect the ER protein is a test that is used routinely. I have heard of it being used for low grade serous OC though, where ER-positivity would open up the use of letrozole etc. Perhaps in some cases these treatments are also used for high grade serous OC, if the cancer cells are ER-positive.

I hope that helps.

[sticky3006 in reply to MaldivesFan]

Yes really interesting thank you. You’re a mine of information! X

[mizpurple]

Hi Linda - I've been on letrozole for just over a year now. For me the side effects have been pretty mild - an increase in joint pain and some painful dryness of my private bits. I choose not to take any pain relievers for the joint pain as I already had some arthritic tendencies and the increase was minor. I use lubricating jelly for the dryness and it did improve after about six months. I was told that there are other estrogen blocking drugs that can be used if letrozole's side effects had been too miserable. So keep that in mind. I was fortunate not to revisit menopausal symptoms like hot flashes and night sweats. But every woman's experience is different. All the best to you! Deb in Colorado

[Robbo16 in reply to mizpurple]

Thank you Deb - I will keep this I mind x

[thomas62]

Hi Linda, I don't understand why your onc said you are not be eligible for maintenance drugs - I am oestrogen positive - Low Grade Ovarian - and I've been on a number of oestrogen inhibitors, namely Letrozole, Examestane and Tamoxifen, so when and if Letrozole stops working you have also got these other ones that you would be eligible for. Also as a High Grade Ovarian there are PARP inhibitors now although I don't know eligibility criteria. Then there might be Clinical Trials that you could be eligible for. I don't know what Quick Score 8 represents. If you're unhappy with what your onc telling you - ask the advice of the Nurse at Health Unlocked - you could also ask for a 2nd opinion with another onc at a different hospital - someone experienced in HGOC.

[Spirit22 in reply to thomas62]

Gwen Maldives Fans post above explains what a quick score 8 is 😊

Xx

[thomas62 in reply to Spirit22]

Thanks Spirit22, Yes I got Maldive Fans message. She made it very easy to understand.

[Robbo16 in reply to thomas62]

Thank you for this helpful information x

[Di16]

I had Letrozole for 2 years, without too many side effects. I was really disappointed when it stopped working a few months ago. Di

[Sherrym]

Wasn’t PARP INHIBITORS mentioned? Please research & ASK!!