anyone had positive results with Letrozole?

Hello, I'm new to the community, so had better introduce myself! I was diagnosed with stage 2c Fallopian tube cancer in feb 2015. After surgery (hysterectomy, removal of both ovaries, Fallopian tubes and grapefruit sized tumour) I had carboplatin and taxol for about 5 months.

This bought me a great and healthy 2016 - unfortunately my ca125 levels started to rise and now pt and ct scans show a number of tumours. Much harder to cope emotionally with the recurrence compared to initial diagnosis.

I'm still feeling very well, so rather than rush into second line chemo, I am taking an oestrogen suppressant Letrozole. HAs anyone had any positive results from it? I'm not getting any side effects so there's certainly nothing to lose.

WIshing you a positive thoughts for the new year from sunny oz.

Dawn

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  • Hello. I had Letrozole after first recurrence. At the same time I made a few changes to my diet, cutting down radically on dairy and sugar, and taking turmeric and another couple of supplements. My consultant estimated at that time that I'd be back on chemo in 6 months but in fact it was a good 18months before I needed further treatment. Who knows whether it was the Letrozole brought this about - I think it must have contributed and I would certainly take it or similar again. The only side effects were hot flushes, but as my very best friend reminded me , ' that's why cardigans were invented!'. Good luck. Beth x

  • Great to know the Letrozole may have helped. I haven't had any side effects from the Letrozole at all, and after a month feel like I have more energy. I'm also taking turmeric, I grow it in my garden, and don't have much dairy or added sugars. Fingers crossed.

    Best wishes Dawn

  • Hello there ,Sorry that you find yourself in this community,but welcome you,& hope that you will find the answers you are looking for.

    I had a hysterectomy,Nov 2015,& my diagnosis was stage2a grade 3 as unfortunately the cancer had gone into one fallopian tube & I have the serous type. Like you I was offered carbo & taxol which I accepted,& had 4 cycles over 3months,followed by brachytherapy. In March this year my 1st year will be up & hopefully all will be ok. I have never found many ladies who have had cancer in the fallopian tubes so it will be interesting for me to follow your progress with the drug you are on. My concern is if or should I say when this returns as it is like sitting on the edge all the time & I know most ladies are the same.

    How did you manage to get your blood test with CA125,as I have never been offered this, but will mention it next time I see the Oncologist. I was told watch & wait but this does of course create anxiety,not all the time,but somehow it lurks in the back of my brain's filing system.

    I wish you well, & hope that you have a peaceful 2017.

    Love,Caleda xxx

  • Thanks Caleda. When I finished chemo in September 2015 I had 3- monthly ca125 blood tests and meeting with my oncologist. Ca125 remained less than 15 until September 2016 when it increased rapidly.

    Yes watch and wait is very difficult, always nagging away in your head and I find every little twinge or ache increases the anxiety.

    Best wishes Dawn x

  • Thank you for your reply,I will be asking about the CA125 blood test when I next see the Oncologist. Happy New Yearxx

  • Hi Dawn - I was diagnosed with Fallopian Tube cancer Stage 2 in January 2014, followed by carbo/taxol, finishing in June 2014. When my CA215 began rising in March 2016 I was offered Letrozole as it works at an early stage in terms of stemming tumour growth and extending quality of life, without chemo.

    I was on Letrozole for 3 months but unfortunately my CA125 continued to rise. I had high hopes and felt let down, as it had worked so well for others.

    I know my own experience isn't what you want to hear right now, yet you've got to remember that our cancers are all different. I do think you have every right to expect Letrozole to work for you, as one of a number of newer treatment options which are being offered. It simply wouldn't be suggested if it wasn't a good option and I'm all for it rather than the standard chemo. Wishing you the very best for 2017 x

  • Thank you for your encouraging words. My oncologist said there was about a 1 in 5 chance of it helping. Ct scan soon, so will let you know the result. What chemo regime are you on now? If the Letrozole doesn't work I will be on Carboplatin and gemcidebin (sorry can't spell these drug names!)

    All the best to you too for 2017. Dawn

  • Hi Dawn - I'm just back from my 1st chemo of 2017 today. I'm on Carbo/Caelyx this time round. I questioned this combo again with my consultant but was strongly advised as best option for 2nd line in my case. I like to understand why treatments are put in place, and next time round will specifically ask about gemcidebin.

    Caroline x

  • Sorry - just googled it and it's gemcitabine

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