Recurrence update

[Barmycharm]

Hi lovely ladies

I saw my oncologist on Friday to get results of PET scan and update of first recurrence.

The scan showed another area of growth this time near my liver. Measuring 14mm same as those in diaphragm and cardio although these haven’t grown much since last scan. Extremely bright in velocity although not huge in size.

She feels it’s still not right to start chemo as yet but wants me to try Letrozole.

Can any of you that have tried or are on this please let me know if you’ve had any success with it helping to slow down spread or growth please.

I know it’s used and proven to work well for breast cancer but not proven with Ovarian. I’m slightly concerned that my oncologist is clutching at straws because I’m not presenting in normal way as she puts it as I have spread across chest heart and now liver areas but none showing in abdomen.

Also if anyone has any tips on best time to take it, all they’ve said is make sure it’s same time each day. Does it make you more tired in which case best to take at night and any experience of leg pain from it which I already have or extra headaches because I suffer with migraines.

Apologies for lots of questions but I know my teal sisters will have experience knowledge and advice to help me

Much love to you all

Claire xxx

[doodoolatrice]

Hi Claire, sorry that you're dealing with a recurrence. I was on Letrazole and it worked for me for 18 months. I used to take it first thing and didn't really have any side affects. Good luck xx

[Barmycharm in reply to doodoolatrice]

That’s good to hear, thank you so much xx

[win_56]

Hi ClaireI am on 2nd recurrence and deemed platinum resistant. I have been on Letrozole since beginning of September. Two cancerous lymph nodes in chest and two small tumours in abdomen and 1 small tumours in pelvis. I had a scan beginning of December and they have shrank a few millimetres and no new growths. I get the occasional hot flush and feel tired now and again and no joint pains. I take it in the morning. I also take melatonin 40mg before I go to bed. I am on a Facebook group"always hope" and many women take it as it is affective in inhibiting estrogen (sane as Letrozole). I am waiting for my next scan to come through shortly. All my bloods have been fine. I also exercise a lot and do a lot if walking and take Vit D3 high dose everyday, I personally think this is why I've had no joint aches and pains. All in all I get on with it fine and live a normal life....no comparison to being in chemo. If you need any more infomation please do not hesitate to contact me, June.x

[Barmycharm in reply to win_56]

Hi June

Thanks for your reply. That’s very reassuring.

I also take high strength Vitamin D3 have done fur 4 years ever since my first diagnosis and walk about 4 miles most days with my dog. I also try and do a couple of the exercise classes on line with Ovacome. A lot of the time though I’m fatigued with lots of aches and pains. I’ll look into the melatonin and maybe that will help.

I’m so glad to hear that the Letrozole seems to working for you and hope you continue to feel well

All the best xxx

[win_56 in reply to Barmycharm]

All the very best to you too Claire.xx

[Peony13]

Hi Claire,

Sorry to read that things are tough for you at the moment.

I read your post with interest as I am in a similar position and relate to your point about feeling your oncologist was clutching at straws.

I was prescribed Letrozole at the beginning of January after PET scan showed disease progression 8 weeks after finishing chemo. I was very disappointed as thought I was going in to be told I was NED and could start maintenance treatment. Instead they told me I have a new 2cm tumour in the pelvis - sited between the sites of 2 previous tumours which were removed in my first debulking.

Oncologist described me as chemo resistant and prescribed letrozole with the intention of doing more surgery asap. It has now been 6 weeks and I have had a biopsy and scan in the last 2 weeks. According to the biopsy doctor, the tumour hadn’t grown and the surgery scheduled for this Thursday would only go ahead if it hadn’t progressed a lot further. As they’re going ahead with surgery, I can assume it hasn’t grown significantly and letrozole has been a factor in that, so it looks like it can be effective for ovarian cancer patients. As you can imagine I am very very pleased about this.

I had a lot of aches and pains prior to being prescribed letrozole which I think has something to do with then new tumour pressing on a nerve, although I’m not sure. These aches have continued and got worse since I’ve been taking it. I have weekly acupuncture to help with this, which does help. I also take co-dydromol when it’s bad and use a hot water bottle/baths daily. Beyond the aches I have not experienced any other side effects. I take it at 7:30am every morning. I will investigate vitamin D if that helps with the aches and pains - thanks for the tip June.

I think letrozole can help and really hope it does for you. Wishing you all the very best.

Laura x

[Barmycharm]

Hi Laura

Sorry to hear you didn’t get any time NED. That’s tough. I did get 18 months but during that time my bowel got twisted in the scar tissue and I had emergency surgery, in hospital for 3 weeks right at the start of lockdown so wasn’t allowed any visitors. I also had thoracic surgery last year to remove a suspicious node near my lungs for biopsy and the surgeon found another mass inside my chest cavity which hadn’t shown on any scans!

This disease throws up so many different and difficult scenarios doesnt it that we have to get ourselves through?!

I have been taking vit D for four years but still suffer with lots of aches and pains particularly in my legs but would still recommend you taking it as it is supposed to be very good for boosting the immune system as well.

I’m glad to hear that Letrozole seems to be working for you and hope your surgery goes ahead. Hoping that it it’s successful for you and that they will be able to get you to NED further along and you will get some breathing space.

Very best wishes to you Let us know how you are afterwards xxx

I

[Lizz49]

Hi Claire,

Sorry I can’t give any advice regarding letrozole as don’t know much about it, but I believe the side effects are much less than chemo. And it’s good that your oncologist doesn’t feel that chemo is needed just yet. I hope the letrozole keeps things at bay for a very long time!

I’m also a bit in limbo now awaiting keyhole surgery to take biopsy, check extent of reverence and if viable, a second debulking will be scheduled. This is such an unpredictable disease and it seems each of us are affected so differently…the main thing is that we are able to advocate for ourselves, we trust our team and that we have lots of options. I hope the letrozole works so well for you and you keep enjoying those 4 mile daily dog walks! My labradoodle would be jealous as we don’t manage 4 miles a day with him!

Sending hugs

Liz Xx 💖

[Barmycharm in reply to Lizz49]

Thank you Liz and best wishes with your surgery and biopsy. You’re right it’s such an unpredictable disease xx

[Laz66]

hi, I have recently been px letrozole. No problems so far. 🤞. Hope it does its job for us OC ladies. I am pushing for biopsy as my understanding is that its effective for oestrogen positive but not progesterone fed tumours and I don’t want to take meds if not clear they will help. I get rescanned 3 months after starting it. Good luck x

[Barmycharm in reply to Laz66]

Thanks for your reply. That’s interesting to hear about the oestrogen. I’d be interested to hear if you do get a biopsy for it. Best wishes to you xx

[Laz66 in reply to Barmycharm]

I have surgeon appt. soon. Recurrence is single 1cm nodule in between liver and diaphragm. From my first op in 2019 my biopsies all high score for progesterone and very low for oestrogen, second op 2021 the opposite with no progesterone score . 🤔🤔… I also take vit d , do lots of exercise and take letrozole with the rest of my meds. Xx