Ca125

Hi Diney and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I can't help with your question but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be more easily spotted.

While you're waiting for replies, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi Diney

When I was diagnosed Feb 21 my ca125 was 2580 after a long journey acities drains chest drain surgery more chemo, maintenance drug which I could tolerate  blood transfusions, a few months just being monitored 

I had routine bloods in Jan I saw a consultant who said my ca125 was 32 it had risen from 12, he said not to worry its still in range, I got home and something didn't sit right in my head sk I rang my specialist nurse had my bloods done again at the end of Feb and the result had doubled again, ct scan was had straight away and 2 weeks later a pet scan ct showed 2 tumors one was tiny pet scan showed 4 various sizes I think.

So I'm back on the treatment journey of life

How fast is your ca125 rising if your not happy discuss it with one of your team.

Hoping it's not recurrence for you. Good luck x

Hi Pam ela

Thanks so much for your message. 
My ca125 dropped to 15 then has gone 18,26,39,53 and last week 69 so it’s quite slow but  steady. I guess I mainly feel that after all the treatment last year then I’ve not been great on maintenance that I’m existing not living, I’ve just had 4 week break from maintenance and started to feel better in my self so the plan had been to reduce the maintenance drugs but then that’s obviously on hold until my scan results now. They suspect I have poly/fibromyalgia too so that’s not helping much either so my body feels battered most days. Goodness what a journey this is!!!!! I feel positively sick at the thought of all the chemo and surgery again and am certainly not in the same condition as last year although I didn’t feel in very good condition then!!!

It is what it is I guess, once I know I can come to terms it’s all the not knowing that i find really difficult.

Take care of yourself  and thank you for taking the time to post, let me know how you are getting on x

I'm very surprised you haven't had a ct scan straight away, got my blood results on the wed and I was having scan the nxt Monday  and a couple of weeks later a pet scan, I don't understand why they are making you wait, 

After your scan it has to go to mdt so more waiting, I had appt with surgical consultant last Thursday but cos its not a straightforward answer and has to be discussed with colarectal team I have to wait another week,  I can't fault my team and the NHS but the waiting is a head wreck.

Am I being rude asking your age, OK if you don't want to tell me, I'm 55 in June we have a fabulous holiday to Cyprus booked for  hubby's bday our anniversary  and my bday and I don't think I will be able to go now I'm so disappointed like I haven't been and going to be going through enough

I hope all goes well for you keep in touch x

Hi

I think they aren’t rushing to scan me because in January at my regular check up I was complaining about a pain under my ribs that I’ve had since the onset. After examining me and feeling something they ordered a scan which came back showing nothing and everywhere else was clear. I’ve read it can take three months of a raised ca125 before anything shows up on imaging so I’ll have waited about 4 weeks for this scan and then another two before I see them, like you say it’s the waiting thats hard!!!!

I am 61 btw:)

When i was in hospital at the beginning of this all with my bowel obstruction I was in the window bed and in the afternoon when the sun came around I used to lie thinking I was in Lindos (Rhodes) and plotting a holiday if I got thru that all. We are booked for mid July, there are 21 of us going, family and close friends and even my ex husband, we’ve holidayed a lot there over the years and it’s what’s kept me going. Like you I’m now feeling so upset thinking it’s not going to happen or at least not with me there. I’m grateful for all of the care and treatment I’ve received and feel i  wouldn’t be here now without having it but a life of feeling unwell all of the time and not being able to at least have my holiday starts to feel like no life:(

Off to stay with one of my cousins on Thursday for a few days so will be nice to be away somewhere and not just sitting at home waiting for a scan. Would love to be able to just sit and drink our usual copious glasses of wine but even that doesn’t do the same anymore!! Luckier than some I try to remember

Have a nice day today if you can

x

Morning 

I don't really go anywhere spend alot of time on my own, my husband works, I had to admit defeat and left my job as pub landlady in November last year.

After my surgery which lasted just short of 10 hrs I never got my core strength back, I have 3 children all born by c section so I have a love line and a life line ️ and not many core muscles, I also have lymphodema in my left leg, a stoma and 3 parastomal hernias, that cause back ache if I walk to far stand to long and I have no strength to lift anything but I don't actually feel poorly don't have any symptoms with this recurrence so I'm grateful of the monitoring blood tests I have.

Holidays are my favourite thing and all I have to look forward to, if I can't have surgery this time and it's chemo only I'm still going to Cyprus they can work my chemo round it, my nurse said if there is anyway of getting my there they will.

I have great support from my family I have 3 grandsons the youngest is 6 months and he is the happiest and smilies baby ever, I have him on a Wednesday as he is good for the heart and soul he can make any sad day a happy one.

Have the best day you can take care x

Hey

That's a lot to deal with, bless you!!!!! 
It’s all such a journey and coming to terms with a different way of living takes time to accept. I haven’t been back to work since last March, had dates to return but haven’t made anyof them and have now decided if I get to feel a bit better I want to go away and just spend time with my friends and family doing nice things. I had two jobs but my long term one was hairdressing so a bit physical for how I am!!!! I had my daughter at 43 so she is just coming up to 18 so just need to be around as long as I can for her!

Take care x