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Anyone out there taking Letrozole for ovarian cancer?

HappyGoLucky66 profile image
11 Replies

I was diagnosed with clear cell ovarian cancer late stage 1 as of last year. Went through chemo and had a recurrence this last sept for a tumor found on my abdominal wall. I am now being treated with Letrozole to keep tumors at bay , Has anyone out there taken this drug if so what did you think?

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HappyGoLucky66
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mizpurple profile image
mizpurple

I've been on letrazole now as a maintenance treatment for 10 months (following three different courses of chemo, ultimately pretty successful). In terms of side effects, letrazole hasn't been too bad. In my case, I've had the typical joint pain and vaginal dryness (some also experience hot flashes and night sweats), and was told whatever symptoms you experience tend to peak about 6 months in and then sometimes taper down, and that was my experience. There are other drugs with similar mechanisms they could substitute if the side effects had been intolerable, so keep that in mind. Hope this is useful info for you! Deb in Colorado

HappyGoLucky66 profile image
HappyGoLucky66 in reply to mizpurple

Thank you Deb for the feed back, just started them yesterday.

bratspies profile image
bratspies

Did not help me at all for my ovarian cancer

HappyGoLucky66 profile image
HappyGoLucky66 in reply to bratspies

Well this sucks! all the emotional garb and night sweats. How long were you on it?

Tvam profile image
Tvam

Hi I've been on letrozole 2.5mg for 2 years now. Was initially diagnosed in June 2015 had surgery &chemo, unfortunately had recurrence in June 2017 so had more surgery & more chemo, difficult recovery post surgery, complicated by DVT among other things but started the letrozole as maintenance in September 2018 and thankfully things are good at the moment,scans and tumour markers stable. General aches n pains from the letrozole,especially in my hands and arms but I've no problem tolerating that as long as the cancer is controlled 😊

HappyGoLucky66 profile image
HappyGoLucky66 in reply to Tvam

I am happy to hear all is stable in you. Did you have ovarian or breast cancer?

Tvam profile image
Tvam

Hi sorry should have been clearer, I had stage 3 ovarian, frighteningly I had very few symptoms,was just very tired. Had bloods done and because I had previously worked as an oncology nurse I did tumour markers CA125 and they were raised,an ultrasound was very suspicious so a CT scan confirmed bilateral ovarian tumours and so the journey began!

HappyGoLucky66 profile image
HappyGoLucky66 in reply to Tvam

Thank you for sharing. I had felt tired as well but I lump I felt on my right side still I just thought I was irregular in my bowel movements. My ovarian cancer is inherited on fathers side, and after going through chemo last year and then had a reocurrence just this last Sept. So with no cancer showing in my blood throughout chemo. My oncologist believes I will have to have ct scans every 3 to 6 months to be able to detect if the cancer is still lingering.I have to be vigilant on staying in tune with my body. Keeps me a bit uptight. Can you offer any advice since you have been in the field?

Tvam profile image
Tvam in reply to HappyGoLucky66

To be honest I feel very like yourself, nervous for the future. At the time of my recurrence I was feeling better than I had in a long time and was due to go back to work. My Ca125 was never horrendously high (140 at diagnosis) and it didn't increase at time of recurrence, my recurrence was picked up on routine scan and that always makes me very nervous the fact that I didn't know I was sick if that makes sense. I too was having scans every 3 months initially now moved to every 6 months ( that too makes me nervous). As regards advice on how to manage I try my best not to worry based on the fact that worrying doesn't change a thing except make you miserable for longer. I don't look too far into the future it unsettles me a bit. I was 48 when I was diagnosed, 54 now,married with 2 children 21 and 18 both at home doing university remotely because of Covid so life is busy. Unfortunately I had to retire early so I do miss work. I guess you just fall back into a new routine, cancer does change you but I try to not let it define me. I was me before cancer and I'm still me. I mourn my pre cancer life for sure, cancer makes things uncertain and you begin to think about your mortality. Sorry a bit morbid now! I hope you'll keep well and start to enjoy life again. Be good to yourself xx

HappyGoLucky66 profile image
HappyGoLucky66 in reply to Tvam

We have a lot in common I am 54 as well, never had children never could. You are so right, we must just live in the moment. I still miss my long hair and my way at viewing life before this all happened. I have a wonderful supportive husband and so much to be Thankful for. My dear sister I will pray for the health of your body and mind and say I so much appreciate your honest and open conversation me. God bless .

Tvam profile image
Tvam

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