Stage 3 C ovarian cancer and treatment plan

Thank you, good luck.

I did get some gloves and socks from Amazon that take gel packs but to be honest ice from the supermarket worked just as well for my hands.  My nails got very ridged and brittle with some nails turning black.  I was told not to bother with the ice cap as I would lose my hair anyway. Ice on hands bad enough but everyone very brave that uses an ce cap. 
I had four sessions of chemo, extensive debulking and then a further three sessions of chemo.  They removed virtually everything and resected the bowel.  I am in a better place than 1 year ago and currently on parp inhibitor Rubraca which I have had to pay for.  
CT scan clear but it was clear in Dec prior to surgery when surgeon got a massive surprise and spent 8 hrs trying to remove as much as he could. 
CA 125 numbers which were initially 1800 down to single digits now doubling each month so doubt I will be on this drug any longer. I didn’t have the Braca 1/2 gene but did have Tumour HRD positive.  
My faith in the medical profession not very high although I cannot fault my surgeon.  I am alive because of his skill.  
I don’t as yet know the next step but it could be Avasin and chemo.  
Feel like screaming some days as you either don’t get answers to specific questions, are fobbed of or told to wait and see etc etc

Oncologist nurses have hearts of gold.

wishing you well xxxxxx

Thank you for sharing this Zander, it sounds like you've been through a lot but there have been positive outcomes too. My experience with doctors is that unfortunately they don't have all the answers, which can be frustrating. It's important to stay in tune with your body and chase people up when something doesn't feel right. I wish I had been more insistent and asked more questions at the start of all this but no one expects this outcome! So keep chasing.

I've done two chemos but thinking about surgery seems quite a leap so trying to take one step at a time. I'm also working on what I call mental hygiene and do, read and watch only uplifting things to help me through this process. It's hard though as we all know sad thoughts creep in all the time.

I agree the nurses are incredible, I'm impressed with their work and dedication.

Let us know how you get on with the new treatment.

T

I noticed you had mentioned travel insurance, I’m still getting treatment but have a terminal diagnosis and have struggled to get travel insurance- where did you manage to get your travel insurance from?

Hi

Managed to get travel insurance with All Clear 0800 640 4829, very expensive but went for 1 years cover.  My family do not live near me and I intend to keep travelling while health permits.  Like you tried so many different insurance companies, soul destroying. 
Good luck, keeping everything crossed you are successful.  

Hi Tabatha

i am starting my chemotherapy next Friday 29th December 2023. I’m also going to try the cooling cap.  Did you find it difficult to cope with the cooling cap?  Im told the carboplatin and paclitaxel can make you feel extremely cold, was this your experience and how did you cope? I’m dreading the chemotherapy !  I had my debulking surgery in October, it went extremely well, I was very well post op and continued with no problems whatsoever. Wishing you a very peaceful and happy Christmas. Big hugs x

Hi Annie, im sorry to jump on your post but I just wanted to wish you well with your chemo. I had mine from Feb to May of this year and honestly it wasnt as bad as I thought it was going to be. I didn't try the cooling cap, I had such long thick hair I couldn't face it coming out in bits, but mine started to come out a week or so after my first treatment, so I had to shave it, no-one tells you but it hurts when your hair falls out, it makes your head sore. I had the opposite with my chemo, I was always hot, I had a little hand held fan I took with me, everyone is so different how they react to chemo. I'm having a few issues at the moment, but I've been so lucky with my cancer, just a year on and I've been given the all-clear and I'm back at work full time. It's quite a whirlwind. 

I am sending you lots of virtual hugs and love for your treatment, the one thing I can say is stay positive, it kept me going, and remember to still live your life while having treatment, I didnt want to look back and think I'd spent 6 months just staying at home, when you never know what the future holds. 

Have a wonderful Christmas, lots of love xxxx 

Hi Woottof

Thank you so much for your email. I agree with everything you say. I intend living my life to the very best of my abilities. I was delighted to read how successful your treatment has been.  Also that you were able to tolerate it!  As a result of my surgery being such a breeze I feel I may well have used up all my good luck!  I am “A glass half full kinda girl’ and I hope throughout my treatment I will continue to be.  I was unsure about the scalp cooling but I decided if I didn’t try it on my first treatment, then that ship would have well and truly sailed!  May I ask you if you lost your eyebrows and eye lashes (please don’t feel obliged to answer if  you prefer not to) Congratulations and Well Done You !   Wishing many, many years of good health and happiness, you deserve it!

Wishing you a peaceful and happy Christmas and a health New Year  x

You sound to me like you have the right mindset, I went in to chemo thinking the worst so I am happy to say it wasn't to bad. I wouldn't hesitate to do it again if I ever have to.  I did loose most of my lashes and my brows thinned out alot, but that wasn't till the 3rd round of chemo. they grew back so fast once it all stopped. All your other hair falls out quite quick though, so don't be alarmed, by that. I definitely get the luck thing, my chemo was first and I had my surgery after the 6 rounds, so I was prepared for the worst, but honestly it was all manageable. I'm so grateful for having a relatively easy time it, but it does make it harder to process everything if that makes any sense. 

Xxxx

Hello, i used the cooling cap successfully and kept my head of hair. It thinned but didnt get patchy. I managed to keep my eyelashes and wyebrows thinned right up to end of chemo, then they fell out. But ro be honest they grew backnso quickly. Shading with makeup really helped with this for me. I am now a year post chemo. On Niraparib and feeling well. I am on the 100mgs dose though as platelets would not tolerate higher. Love and best wishes xx