Lowered CA125 and a nugget of hope 🙏

[Kazzh]

After 2 chemo sessions of carbo & taxol plus Avastin, my blood test level has reduced from 750 to 586 which is the first positive news I have received since diagnosis mid December 👏 it has given me a huge boost! My CT scan is Tuesday 20 Feb to see if my huge mass has shrunk enough for surgery, if so, it will go ahead 7 March. Its such a rollercoaster of emotions isn't it. I have more times recently when I've thought more about my future, and almost forget at times that I may not be here to experience all I will miss in years to come. It makes me feel so sad. I had a troubled life for many years and in my 50's I was finally feeling like my life was taking off, and then this hit. I am strong, positive and do make sure I enjoy every day so its not a relection of my overall experience, just sadness at wanting to live a good, long life.

Still, new drug trials come about & there is always hope for that future, so for that I am grateful 🙏

[Emcee71]

Dear Kazzh

Just wanted to send you a big hug. I also have CCOC (provisional stage 2B) and in my 50s.

I had been single for most of my adult life and found life challenging due to undiagnosed ADHD. I had found the love of my life - an old friend - and we got together on my 50th birthday. I was becoming ill with symptoms as I turned 52 last year. Luckily he is still with me but it's incredibly hard while I'm in treatment, as we live in different cities and he has kids to look after full time. What I'm clumsily trying to say is that I share your sadness that your life has turned around only to have this hit you.

I join you in hope that new treatments are coming through. I had a chat with a nurse last week and she said how amazing it is that even 2 years ago we would not be on the phone talking about immunotherapy as a possible treatment. Keep hopeful and I think actually 'forgetting' is good. I feel happiest when I am distracted XX

[Kazzh in reply to Emcee71]

Thank you so much, you know how I feel. I am so pleased you have found a partner to share your journey with. I recently removed my profile from a dating sight as it would give a whole new meaning to 'looking nothing like my photos!' 😆 it's amazing the progress that has been made in medicine, and I hear there are various new drugs they are trialling too so I am hopeful we'll have more opportunity to stay well. I am busy watching football on TV, my passion, although stressful at times! 🙈 distraction definitely helps xxx

[Emcee71]

PS I forgot to say to you, I will be hoping fervently that your mass has shrunk, and please let us know how you get on because there are lots of people on here who will be gunning for you, including me X

[Saintgermain]

I agree it's a roller coaster of emotions and changes you. I wanted to share my recent journey it's a bit different from yours my CA125 went from 15 to 915 after being NED from frontline for 22 months recurrence was found I just finished 6 carbo/taxol/keytruda the CA125 dropped dramatically especially the first 3 treatments its now at 19 wishing the same for you.

[Kazzh in reply to Saintgermain]

Gosh, I have often wondered how people cope with a recurrence, it must make your heart sink. But so encouraging to see that chemo once again worked for you 🙏💗 not heard of Keytruda, interesting. Continued good health to you xxx

[Saintgermain in reply to Kazzh]

From the bottom of my heart, I pray you never have to experience it! I agree it was a challenge wrapping my head around it but glad I was platinum sensitive and my CA125 is a good indicator for me. I'm in the states Keytruda is an immunotherapy infusion their using for different types of cancer for OC its a bit up in the air endometrial good evidence they included it the 6 carbo/taxol supposed to protect your good cells and help them identify and destroy cancer cells that fly under the radar. I'll still continue with the 30-minute infusions every 6 weeks no side effects along with an estrogen inhibitor since my type is driven by it. Please keep me posted how you're doing. As Doggies221 commented second generation tumor sequencing test is a must.

[Kazzh in reply to Saintgermain]

Sorry you've had to experience this. Im just so glad your drugs are working 🙏 I will keep you posted. I only had one symptom, needing to pee more often, (tumour pressure on bladder) nothing else. Still dont have symptoms, its the chemo that's hitting me hard but I will keep going and stay hopeful 💗xx

[Saintgermain in reply to Kazzh]

If your having muscle aches and pains Claritin seems to help

[Doggies221]

so happy to hear that. Here’s to complete healing🍀. Make sure your tumor gets tested for molecular alterations/ mutations with next generation sequencing tests so that they know what drugs might be available to you in trials. Best of luck!

[Kazzh in reply to Doggies221]

Thankyou 👍 I will do that for sure! Xxx

[Mintybiscuit]

Hi Kazzh

I’m so glad to hear you’ve finally had some positive news. and fingers crossed the surgery can go ahead. It’s coming up to a year on March 3rd since I received my diagnosis. I’m now NED and on Nariparib. I hope you have some support around you. Xxx

[Kazzh]

So happy for you getting to this point & long may it continue 💗I am blessed with huge support around me and it sounds like I am going to need it especially around surgery time. Any tips on planning for this & how others can help the most is very welcome xx

[Bananasmoothie]

Hi Kazzh, sorry you've joined the CCOC club. I had just carbo & tax post op and found it really hard. It came as a big surprise as being what I thought of as young, fit and active, I thought I'd sail through it. You can find the regimen I followed for chemo in my previous posts. Being very proactive with drugs for pain, constipation and nausea would be the greatest lesson I learned. Also ginger biscuits!

Make sure you have clothes with no waistband for postop, and a pillow under the knees in bed really helps.

You've got this! Sending hugs x

[Schnauzer19]

It’s crap isn’t it, life just changes in an instant. I don’t have clear cell but I know how you’re feeling, we all do and it just seems so unfair but you must remember there are ladies on here with stage 4 that were diagnosed many many years ago. Treatments have come on in leaps and bounds. My advice to you is stay away from Google, I read way too much initially and it didn’t help me mentally at all. Most of the info is out of date, just listen to your doctor and joining sites like this is very helpful, you’ll get a lot of good advice on here from people who have or are walking in your shoes. I really hope your mass is shrinking and shrinking away, please let us know how you get on, sending hugs xxx

[Tulips66]

Hi Kazzh , I hope the chemo will have done its job & your surgery will go head in March. 🤞I had surgery first & then chemo . I hope the fact that I was diagnosed Jan 2019 at 52 will give you some encouragement. I won't lie the surgery is tough & I woke up with an ostomy bag, but like all the other women on here who have been lucky enough to be able to have surgery you will get through it . You seem to have a positive mindset & this will really help you going forward. I had recurrence in 2020 , more surgery,chemo & presently on a parp called Niraparib. I do often wander into negative thoughts, like will I ever see my daughter's marry or will I ever be a granny but I do still feel lucky that I have still been around to see them finish school & college,to see them graduate & start working . I find my long walks everyday with music blaring in my ears puts my fears & doubts to bed & I just move on again so if you have an interest in something try & keep it up as much as your treatment allows you to.I wish you all the best ,you deserve to get your new life back again . KEEP strong & let us know how your doing X

[Buster98]

I am thinking about you today. Hoping that your good news continues. I also have a large mass they are trying to shrink. My second chemo session is tomorrow. It is a difficult and scary journey, but the support on here really helps. Take care. You got this!