CA125 count risen after 3 months remission

Some positive support needed please! Just had CA125 results and its risen to 500 in 3 months since finished first chemo (was 20 at end of carbo/taxol). Am feeling very down, had CT scan today and waiting for consultants appointment next week. Trying to keep it together for my two little girls but such a shock, scared what they will say next week?

Any advise?

20 Replies

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  • Hi Ella

    I,m so sorry that you have had this setback. Of course you are scared....what a worry to have.

    It may be that your ca125 numbers are raised for another reason ?

    What I do when I am very worried about anything is keep very very busy , try to have the odd treat and best of all to spend as much time as possible with loved ones. I also try to get some exercise in and , personally, I avoid alcohol as it makes things worse.

    I do hope that you get through the next week and that your appointment will be really helpful and insightful.

    Lots of love

    Charlie xxxx

  • Hi Ella

    I do know how you feel as the same happened to me. My chemo finished in May, my remission was confirmed in June, in September my CA125 started to rise and a ct scan confirmed it had returned. As I have felt so well I've got by just trying to put it to the back of my mind. I saw my Oncologist today and she has said that I will eventually need chemo again, I have to have another scan at the end of January then she will decide in February whether the chemo needs to start or I can wait for another 3 months. I'm just so relieved that I don't have to worry about it until the new year, and can enjoy Christmas.

    It is scarey when it returns after such a short time, but keep fighting and try to stay positive. There is always so much support on this site. Good luck for next week. Let us know how you get on.

    Love LInda xx

  • Hi Ella

    A lot of the oncologists do not use the CA125 as a first test now, because it can be so variable. How do you feel? Do you have any other symptoms? I know you are scared and this can give rise to all sorts of feelings that may or may not be there really. I convinced myself I had growths in my diaphragm shortly after my op and was told by my oncologist that he would open me up to look if I REALLY wanted him to, but there would be no guarantee that I would be able to live as normal a life as I was, up to then. He advised looking for more definite signs. Is there a specialist nurse you can ring to discuss this with. If not, give the Ovacome helpline a ring. It's 0845 371 0554, weekdays, 10 till 5. It's really helpful.

    If there is a recurrence, there are many options and I know that all the friends on here will have advice and suggestions. For now, though, try to stay positive, busy and plan for getting the best kind of news next week. If it is reassuring news, it will be worth a celebration, if not, you will have support all along the way. I hope it is good news. You've done so well so far.

    Sending you hugs (((xxx)))

    Love Wendy xx

  • I do know how you feel.my CA125 started to rise in march and ct scan confirmed that C returned. My oncologist said that I will eventually need chemo again, another CT scan in January then will decide if i need second line of chemo or i could go for another 3 months without it.

    im feeling very well, working as part time, swimming and do aerobic, walking a dog and looking after young family...i do ignore this unwanted visitor and living my life as normal as possible.

    keep fighting,try to stay positive and enjoy every good day xxx

  • I can't add much here to what's been said other than empathy. I think this is something we all have as a spectre in our minds; my count is still dropping and I hang onto that thought much of the time. I can imagine how I would feel if it reverses.

    One thing all the docs agree on is that there are lots of things driving CA 125. It's reflecting anything 'active' and that includes your body doing any healing and other natural things. It is worrying but shouldn't be the focus.

    Stay strong and let the docs really check it out

    Sue

    X

  • Hi Ella

    Just sending you very best wishes and keeping fingers and toes crossed for you.

    Linda xx

  • Hi Ella,

    keep strong, and fingers crossed you won't need anymore treatment for a while. xx

  • Hi Ella,

    I am in the same situation as you. My cancer returned in August after just 3 months remission and my CA125 has continued to rise, it is now at 590. I've been told I will have chemo again, possibly the Rotterdam Regimen, but because I am still feeling well my consultant is happy to leave me for a bit longer, I'm just hoping I'll get to enjoy Christmas. Hang on in there and try to stay positive, keep busy and active - and pray for that miracle we all want!

    Love Liz XXX

  • Hi there Ella ,

    Thinking about you and sending you positive thoughts xx

    Love Jan xx

  • Hi Ella so sorry it is such a scary time. I had a second line chemo which finished in Aug but the damn disease is back and I am waiting for an assessment at my hospital for draining fluid from my tummy, I look about 8 months pregnant (not I should add) All I can say is keep strong and positive I dont know what they will do this time had carbo/taxol first line, carbo/gem second time. I am sure there are lots of different drugs they can give hugs to you nikki xx

  • Thanks to everyone, just getting so much support back had helped enormously. I have calmed down a bit now, and will focus on keeping busy and fun with the kids,we are christmas shopping at the weekend. I don't feel ill, but I didn't last time when I was first diagnosed till I bloated up. I think that's what so scary about this disease! The thought of chemo again :(

    Take care everyone and good luck to you all too x

  • Hi Ella Rose

    Just joined and having read your questions and the answer I really am finding comments very positive and informative. I have had several recurrences and as positive as we try to remain. it really floor's you and then all your positivity takes a big knock . Then II get a grip, and build yourself up again it it such a difficult unseen disease. Take hope though as my onc says there are still plenty of tools in the box I was diagnosed 3c so I try not to go into depression,I just give myself a very good talking too. I know it is easy said than done.The ca125 is a pain I must admit I tend us this as a guide, but then it does depend it is just one the 3measures my onc uses 1 how you look and fell in yourself 2 what the scan reveals and 3 markers provided by the ca 125 the trouble is we can look well but we dont have a visible

    picture we can check what is going on inside. This is all I can offer try to stay strong.

    take care.X

  • Hi Passenger

    Thanks for the reply. I must admit I thought this horrid disease may come back, but not so quick. Everyone's replies have helped me pick myself up and give myself that talking to you were mentioning :) I was also 3c. My worst time is when I think of my two little girls ( 3 and 5) I always cry when I think of having to tell them but I will have to say something especially to the older one if I have chemo again as she is clever and will want to know why I'm losing my hair and so tired again. I try and be positive, just want to get my onc appointment over with so I know what I'm facing this time - then I can get ready for battle - its the unknown again that's hard.

    Thanks for the support, take care as well x

  • Hi Ella

    thanks for the reply it may sound strange but its nice to meet someone with 3c I was diagnosed in Oct. 2009 and very frightened. Something I would not have wanted, and as usual I has no symptoms. Just had some bloating in the tummy, and then all hell broke loose. my ca was 2000.and the 2 tumours were .5 and 6cms so it was 6 chemo and then the debulking.which was in the June2010 these were removed it was unlikly to be a cure but It would be a chronic illness having had a chronic rheumatiod/arthritis for 32 years I thought that will do I settle for chronic..I had read about having further chemo after the op I think the onc thought I was balmy asking for more chemo anyway I had 3 more again carbo/plat. this finished in Jan 2011 then recurrence in the May2011 then onc was suprised and thought I should have had a bit longer. Anyway went on a trial Icon 6 carbo/gem my ca was 900 and it only went down to 230 anyway but you dont lose your hair on this combination, I came off it due to 1 lung filled with fluid thought I had a chest infection that what I know. this was due to the body reacting to to the presence of new tumours in my chest cavity via the lymph system. Anyway that was a big shock mind you a good way to lose weight about 5 ib of fluid. So now my scans include the chest and throat as well as the tummy now, so it did me a favour. So now I have started another trial from Aug until next week 24 taxol weekly followed by a scan then we shall discuss the possibility of a break ca was 990 to start with and has been down to 11 for the past 4 weeks.

    so everyone is very pleased. I did ask the dreaded question how long should this last about 3months!! was the answer, I dont suppose they can say anything else Compensation and all that anyway we shall have to wait and see! We are very lucky to have so many skilled people fighting for us. I do like the trials as you do get monitored a lot more and scans which suits me as not knowing what is going on inside.Let me know how you go on. I hate the results because I rather be in my own world. Hope I havent bored you too much I keep moving my sell by date! The bonus is I havent had to give my husband my pin number yet!!

    Good luck and remember lots of combinations.

    XX

  • Dear Ella Rose

    I was so sad reading your post to think of you having to keep strong for your little girls. This is such a burden on top of everything else you're coping with.

    I think it's worth contacting Ovacome. I read some while back that there was a support group or meeting especially for younger women with OC. You all have things you can share to help and support one another in addition to the group of friends here on the site.

    Sending my love xxx Annie

  • Hello just wanted to say stay strong you can get through anything that is thrown at you. Your two girls will make sure you do.

    You will be in my prayers. Good luck hunni,

    love suzanne.. xxx

  • Thanks Suzanne. I've kept really busy this weekend, lots of xmas shopping, bought the tree, carol service. We are all so worn out we sleep at night at least! Just want to get tomorrow over and see whats going on. I don't feel as negative as I did after all of the positive feedback from this site.

  • So Glad to hear that. You hold your head high and fight like hell hun you can do it i know you can.

    I hope you have a wonderful xmas.

    lots of love and all the support and prayers in the world.

    love suzanne. xxxxx

  • Just to thank everyone for their support and good wishes. Good news - my scan was all clear. They have found diverticular disease and I am on antibiotics. Not sure if the chemo has made this worse? I did not know I had it . This may (?) account for the rise in my count, they are not sure, so keeping close eye and regular blood tests - best Christmas present ever.

  • Hi Ella ---I checked back in on this as I was wondering... That's wonderful news!!!!

    I am so glad for you, and how great to have it all clear in time to make this a wonderful Christmas for you and the kids. You need to manage a new thing but, hey, it's not cancer!

    Just goes to show that ca125 isn't just a straight indicator of OC... I know we all know this in theory but still, a good lesson not to over vector on it...

    Sue

    xxx

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