Advice needed please

[Tay100]

Hello this is a bit of a long post, so thank you for reading it.

On the 13th March 2018 I was diagnosed with Ovarian cancer. I later found out that it was High Grade 3C.

I was put on Carboplatin and Pacataxol and had my De Bulking operation on the 22nd July 2018

I was then NED for 2 years but as it came back Dec 2020 in some pelvic lymph nodes and was tiny was just monitored.

Scan showed some growth so I was Started on Rucaperib Jan 2023

It Didn’t work and cancer started growing more in my pelvis.

Then had Carboplatin only in May 2023. End scan showed it hadn’t worked and the Cancer was still growing.

November given Caylex ( Red Devil)

March 2024 Didn’t work either but the side effects were rough.

I was then given weekly Pacataxol, this worked for the first 3 months then stoped working. New growths in my lungs appeared.

Then had Carboplatin only, and then they added Gemcitabine. I had a huge reaction to this and ended up in hospital for a week.

I also had Cellulitis. In my leg and then three weeks later I was in hospital again with Sepsis.

I was then put on Carboplatin only, which at the half way scan seemed to be working

End scan showed mixed results. Although the cancer in my pelvis has shrank in all but one place, and this has grown by 1mm. In my lungs there has been a small 2mm growth in the mets there.

I’m now on Letrozole, a hormone blocker, as I’ve just found out that my cancer is hormone receptive. So fingers crossed that it works.

So that’s my history and I was wondering if anyone had any advice for me. Especially around the Letrozole xx

[candyapplegrey]

Hi there, I am at second recurrence and haven't been through everything you have. I remember meeting a lady at my hospital who had had been told she would get the 'red devil' next. I am not a huge fan of chemo. Anyway, that's just waffle. I wanted to say that I know lots of people on here have had Letrozole so am sure someone will reply soon - and to commend your courage. What an ordeal. You can also search for Letrozole on this site and you will find other posts. Lots of love xx

[Tay100 in reply to candyapplegrey]

Thank you so much, I appreciate you replying xx

[Haeh]

letrozole has kept me steady for over four years, unfortunately a lymph node started to grow and last August I had stereotactic radiotherapy and the lymph node shrank. Keeping my fingers crossed. Was told to take Letrozole before bed to sleep through any side effects. Best wishes

[Tay100]

Thank you so much for your reply and help. Its great to hear how long the Letrozole kept you steady for. That gives me so much hope.

I’m so glad that the lymph node shrank for you, that must have been such a relief. I’ll keep my fingers and toes crossed for you as well.

Hugs Tracey xx

[Rosado22]

Hi, that is some journey but you have made it through. I’ve been on Letrozole since February after second line carbo taxol, as a maintenance. I get morning stiffness but a bit of gentle movement does ease it. I find it helpful to do some simple stretches. I’ve also been doing wrist and hand strengthening exercises daily which I find relaxing - I think movement is key if you can do done simple Pilates or yoga moves and short walks. Had hot flushes at the start. And some irritability which can be a good excuse for being stroppy! Doc had added in calcium and vitamin D tablets recently which I am not keen on. I was happier with the supermarket ones. Not sure what is happening currently inside my body as awaiting scan results blood test etc. three months ago I was stable.

[Tay100 in reply to Rosado22]

Hello, thank you for you reply. It’s good to know that the hot flushes ease as time goes on. It’s also good to know that keeping moving is the key to easing any stiffness. .i do hope that your scan shows that your still stable, I’ll keep everything crossed for you!

Hugs

Tracey

[Rosado22 in reply to Tay100]

Check out the Royal Marsden website for simple strengthening exercises for ladies who have aromatase inhibitors such as Letrozole for Breast cancer. I find them v relaxing.

[Tay100 in reply to Rosado22]

Thank you so much, I’ll definitely check out those exercises. Especially if they’re relaxing

Take care

Tracey xx

[Owenmeany]

Hi, I’m sorry to hear what a tough time you are going through. I was diagnosed in June 2020 with low grade serous OC and following surgery and chemo I started taking letrozole in April 2021 and it appears to be keeping it at bay, no recurrence so far 😀. the main side effects I had were muscle and joint pain, quite bad foot pain, hot flushes ( despite having gone through menopause years earlier) these lasted about 6- 9 months and gradually improved they never stopped me doing anything although the foot pain was worse after walking but I took pain relief and kept exercising as much as possible. I hope you it works for you and the side effects are manageable. best wishes Linda

[Tay100 in reply to Owenmeany]

Hi Linda, thank you for your advice, I do appreciate it.

I’m already having hot flushes despite going through the change and having surgery. The side effects you’ve mentioned do seem manageable, and as you say the can decline with time.

Thanks again and best wishes

Tracey

[Tay100 in reply to Owenmeany]

Hi, thank you for your reply and advice.

It seems that movement is key to easing any side effects, and it’s something I’ll definitely do .

I’m glad to hear that the Letrozole is helping to keep it at bay, long may that continue for you!

Hugs Tracey xx

[Saintgermain]

Hello, I'm the states second recurrence I'm in the states my OC is also estrogen positive which I knew when diagnosed my onc recommended saving Letrozole until possible recurrence looking back, I should have taken it following frontline however I was 22 months NED before recurrence. I had carbo/taxol/keytruda followed by letrozole it shows best benefit when started following frontline post treatment pet scan was clear 3-month checkup CA125 was elevated was taken off the letrozole however, there are survivors that started letrozole at recurrence and it's kept it at bay praying that's the case with you. I'm currently on Avastin/Doxil CA125 has went down 4 points so at this point its stable I have a very tiny recurrence in my clavicle lymph node if pet scan in September shows its gone, I'll have targeted radiation. A tip that really helped me with the joint pain from Letrozole was tart cherry juice, had my primary prescribe cellebrex

[Tay100 in reply to Saintgermain]

Hello, thank you so much for your reply and advice. I really appreciate it.

It’s great to hear that your CA 125 has dropped, and that your stable I’ll keep my fingers crossed that you remain stable for a very long time

I’ll definitely get some tart cherry juice and see if that helps.

Take care

Tracey

[Leniko]

Dear Tay- sounds like you are a real Trooper, being bombarded by all these meds! I’m glad you are seeing some results with Carbo. I’ve had similar treatments for reoccurrence including radiation and targeted therapy. I agree re Gemzar, I had to stop it, it was brutal on my system. I am now on immunotherapy (opdivo) which is actually lowering my CA125. I’m glad you are going to a place with many treatment options and hope you will be able to find the right one to keep you in maintenance. Sending you many hugs and healing prayers. 🙏❤️

[Tay100 in reply to Leniko]

Hi, thank you for your reply, I really appreciate it.

Gemzar really is brutal, is it! It’s great to hear that your numbers are dropping and the immunotherapy is working. Long may it continue for you.

Take care

Hugs

Tracey

[Leniko]

I forgot to add that I was on Avastin for 2+ years, which kept me in maintenance. Maybe you can ask your Onco about it.

[Pawpaw22]

Hello Tay100. You are going through some serious stuff there. I send you my support and wishes for some peace through it all. The drugs are great but the side effects not so much. Peace.

[Tay100 in reply to Pawpaw22]

Thank you so much for your kind reply.

Your right about the side effects, but we do whatever it takes, don’t we.

I appreciate your support and best wishes.

Take care

Hugs

Tracey