After three wonderful weeks on Dartmoor ,walking more miles than I ever thought I'd be able to ,scrambling through rocky streams and climbing tors its back to reality. Blood test Monday, oncology phone call this morning . Not the news I was hoping for, my ca125 has risen from 17 last June to 100 , awaiting a scan ,see my oncologist in three weeks. I'd hoped for a longer remission , my last treatment was nine months ago ,nine months isn't long, the first three were taken getting over chemo, I feel devastated ,angry and scared ,all the things I was planning to do , so my lovely overcome friends where do I go from here ,what can I expect .xx
Cheryl.
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I’m so sorry to read your CA has gone up because it’s something many of us fear on here. However, it is possible that there could be some underlying infection that has caused this?
When I had suspected Covid ( I’m certain it was) my CA doubled and I was worried sick.
However, as I got over the Covid, it went back to normal again . ( 17-18 ).
Once you’ve had a scan, you’ll have more of an idea about what’s going on.
Hi Cheryl. Sorry to hear about the rise in your CA125. A rise does not always mean a recurrence. However, after my diagnosis and a trial of Avastin I achieved a long remission of just under 4.5 years. After my first recurrence I got less than a year. My remission this time is now just over 7 years (albeit on a trial for Olaparib). The point I am trying to make is that if you are facing a recurrence and your current remission might be shorter than you hoped for but that does not mean your next one cannot be a lot longer. IF something shows on the scan I would imagine you will either go on watch and wait or be offered chemo. I've aways started on chemo within a week as going on watch and wait would seriously do my head in! Might be worth you asking about a trial if you would be willing. I have been on three and survived to tell the tale. I wish you well, big hug xx Kathy xx
Thank you Kathy , waiting would do my head in too , I would be willing to go on a trial , I've enjoyed life this last six months so I'd be willing to try anything.x
If you are facing a recurrence, it maybe that the side effects of whatever chemo is chosen may not be so restrictive that you find you can continue to do all the things you planned to do. Hope you get good news in three weeks though.
Hi Cheryl, fingers crossed there is another reason for the rise in your CA 125 & that you won't be waiting too long for a CT scan. The waiting to find out is so hard, I know how you feel at the moment, I had a CT scan nearly 2 weeks ago , got a phonecall last week to say i am finished the Avastin Infusions & now have to wait another 2 weeks to receive a phonecall from my oncologist for the results & to find out if I need anymore treatment . I am a nervous wreck & trying hard not to worry & like you I would prefer to know now ! This dreadful covid seems to make everything slower & not actually having face to face consultations doesn't help. I will be thinking of you & hoping you will get good news . Please let me know how you get on . Hugs Xx🌸
Thank you Tulip ,like you say the waiting is hard ,going to try and keep busy , plan to decorate our living room ,couldn't face it last year ,trying to carry on as normal .I hope your results are good ,sending hugs .
Hi, I've only just started my remission, having it maintained with PARP. There are so many positive posts on here, that have given me hope. Your Oncologist will not give up on you, so don't give up on yourself through this anxious time. Sending you a hug 🤗😘
First of all I'm really jealous of your trip, sounds great and I only wish I had the energy. I finished 1st line chemo in May and am on Avastin currently but my CA125 is shooting up so I have been sent for a scan today with consultation next week. We need to keep everything tightly crossed that the news is not bad. CA125 can go up for many reasons. All the best and keep positive, it's the only thing that works. Sue xx
It took me six months to feel anything like 'normal' after my last chemo , sorry to hear you numbers are increasing ,looks like we're in the same boat ,I agree we need to be positive , I'm trying ,going to keep busy . good luck next week .xx
I was Hospitalised 3 days after my 6th chemo with pneumonia and pluerisy, needless to say in a bad place. They took scans of my lung and told me there was something on the scan they weren't sure of maybe the cancer had spread, I'd have to wait 3 months for next scan. It was fine, after that I decided I have to get used to living on a knife edge and try not to dwell on it just enjoy life. Hope this helps. Sue xx
Hi. Your holiday sounds wonderful! I hope it’s not a recurrence but if it is the chemo shouldn’t be as harsh as frontline. I had my first recurrence at 9 months and felt I had only been really healthy feeling for three months. However I went on carbo caelyx once every four weeks and found it quite livable. I had three good weeks each cycle. Since finishing that in March I have been on Olaparib for maintenance. Although I get tired I am living as normal a life as possible considering Covid. 🌻🌻🌻
Thank you Delia, I'm sorry you had a recurrence so soon , 9 months like me ,but you sound positive ,its good to know treatment won't be as harsh as frontline, you've given me hope ,thank you. Xx
Sending you a big virtual hug Cheryl and hoping this is not a reoccurrence. It sounds like you have really got your life back after first line treatment. Keep on living and having walks in the countryside. Do whatever makes your soul sing 😊
Thank you Jackie, I struggled for three months after treatment ended,then suddenly I was happy ,gaining strength and energy ,I almost forgot it could come back ,but I will fight on and try to keep enjoying life.
I know what you mean Cheryl, I’m six months NED and just had a week in Derbyshire. We walked for miles in the beautiful countryside and I was carefree and happy. It did me a world of good. I have made a plan to have more ‘me me ‘ days as I call them and do whatever makes my soul smile 😊
I find being out in the country side takes my mind off it , decided that instead of sitting around worrying for three weeks I'm going to decorate the sitting room .xx
Glad you had a good break. I have booked myself 3 days glamping (October I kn0w) just me and the dog, Even if Im stuck inside for three days it will be a different set o f walls!
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