Feeling desperate

Hi to everyone

Finished 1st line chemo in November last year for OC grade 3b.

Went for an nhs health check at gp 2 weeks ago and gamely asked if they would check my ca125 as hasn't been checked since end of February. It came back at 38 which was a shock as I've been ok apart from a bit of long standing backache. Had it rechecked 2 days ago in preparation for my next hospital appointment 30th June and result now 54. I'm obviously fearing the worst!

My amazing daughter has just got a 2:1in her psychology degree from uni and is home from Brighton for the weekend; my lovely hubby is watching tv downstairs and I'm up here crying as don't want to worry them at this stage. I've always tried to be so positive and can't believe if it's back it's only been 6 months!

Would love to hear some positive feedback from anyone - sorry to be so negative btw! X

23 Replies

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  • Hi Maz,

    Sorry you're going thru all this worry , I know how you feel. I know of ladies that have had a rising CA125 and it's turned out to be an infection of some sort , unfortunately my CA125 started to rise in dec last year(34.5) and then by feb was 82, I spent a week crying myself to sleep, lost loads of weight etc, had scan end of feb and it was back. I was devastated but ive been on 2nd line chemo since end of march and CA125 is now 14. I'm sorry I can't share more positive news just wanted to let you know you're not alone, hopefully it will be nothing but if unfortunately it is it's been caught early. Can you get your Onc to arrange a CT? That would help put your mind at rest.

    Just remember you're never in this alone, we all know how you feel. Please let me know how you get on

    Lisa x

  • Hi and thankyou for replying! Slept for about 5 hrs last night so could've been worse! I feel a bit more positive today - I have had a bout of infected eczema recently and just finished antibiotics and now have a cold so I guess I'm hoping that that's the cause! Spoke to the cns yesterday who feels sure they will do a ct when I'm next seen so I guess we'll know one way or the other! I'll keep you posted xx

  • There are a lot of us who know just how you feel.

    it's just horrible when that test seem to have a mind of its own.

    It confirms what a horrible disease this is and that's something we - and even more our families and friends - don't really appreciate until it comes back after treatment which seemed to be successful.

    I've a similar tale to Lisa, except my scan in February showed nothing. But my CA 125 has continued to rise and perhaps the latest scan last week will show the beast is back now.

    I'm keeping my fingers crossed for both of us now that the rise is due to something else.

    Didn't your daughter do well!

    I bet they both know you're worrying about something.....You'll still be positive, even if you share your worry.

    In the meantime, enjoy your weekend. xxx

  • Hi - your story Mac just reinforced to me how hideous and unfair this vile disease is! I guess that's my worry too if ct shows nothing and you're on a watch and wait scenario! I'm trying to think today that this cancer has taken enough out of my life already so I'm not prepared to give it any more! ! I think my husband suspects something is amiss but you're right - am going to try to enjoy this weekend and cancer can go screw itself lol!! Xx

  • It's early days Maz, of course it's worrying and you're allowed to have low days. My oncologist always says CA125 isn't the best guide to what's going on with OC as it can be so many other things - still, they do check it, so it's obviously useful for them to see and you're right not to ignore it. Mine went up to c.104, I was worried and she told me she's seen women in the high 1000s and not been too concerned. Can't help feeling that's a lie, but she's always been straight with me, so maybe not. When my CA125 started rising again, she said it looked like recurrence, but they wouldn't do anything until a scan showed something there: they don't like to do chemo when the disease is microscopic as it has little effect and makes the patient ill for no helpful reason, as I understand it. This did put a dampener on things but somehow I coped. It turned out it was back and I've just completed 2nd line chemo, I find out next week if it worked and what happens next. It may be devastating news, but having just finished the post chemo month, I feel fine in myself, so I plan to relax and enjoy that feeling for a bit. Hope you feel a bit better about things - and let your family treat you, you deserve some pampering.

  • Hi - it's been so lovely hearing from so many ladies and just reinforcing we're not alone! ! My cns said pretty much as you - that if you're asymptomatic they may decide to do nothing and just monitor. That scares me as meantime that little shit is growing and bedding in!

    Anyway my fingers are crossed for you and all of us on here xx

  • fingers crossed for next week xxxx

  • Thanks guys, and me for you too :) xx

  • I had a relapse like you 6 months after stopping chemo for stage 4a OC . I asked for surgery and more chemo that was 2008 . I am still here and battling . Do not let yourself freeze with fear . Do what is within your control ...Diet , exercise ...Supplements and badger drs for surgery !

  • That's good to hear! ! Do you follow a specific diet or just eat healthily? I chomped my way through a takeaway and a whole packet of jaffa cakes last night I felt so low - probably not the best! ! X

  • I am sorry to sound so stern but you have to be ruthless with your diet . Cancer cells feed on glucose and fructose so all carb pies pastries rice pasta fruit potato is out . Protein ( meat fish greek yogart cheese eggs preferably organic grass fed meat ) good fats ( nuts preferably raw coconuts coconut oil ) and good carbs (organic vegetables ) . To boost immunity i do intermittant fasting ( only eat between 11-7 no breakfast no food 3 hrs before bed )

    I also started a chinease medical chi gong exercise ( it is slow movements exercise coordinating deep breathing and focus ) .

    It works for me . Do what you can but be aware of what you are putting in your mouth ....do not eat for comfort ....it will make you feel lousy later !

  • Hi, try not to worry too much. I know that is easier said than done. Your consultant will most likely get you a scan. My CA125 showed a rise in Aug ust 14, 8 months after finishing first line chemo, they got me CT scan and told me in September that it was back.. I too am stage 3b. On a positive note though, the tumours were small so I didn't need to start chemo, I have been getting scanned every 3 months. They told me there was no benefit to rushing straight in with chemo. I still haven't started chemo. Feel well, have been living life, have gone to Spain and Italy this year and just getting on with life. I go on Tuesday for result of latest scan. Try to stay positive. When I posted to say mine was back last year, I heard from a lady who got a much longer remission after her second line treatment than her first. With regards wait and watch, you get used to it and learn to put it to the back of your mind.

    Big congratulations to your daughter on her 2:1 at University. Brilliant result. Have a wonderful day at her graduation ceremony.

    Good luck.

    Ann xo

  • Hi Ann - yes that's the impression i got from the cns - will probably have a ct and take from there. She did say like you have that they don't always rush into chemo straight away - especially if the recurrence is very small; seems to go more on how you're feeling!

    I have a holiday booked in Sept so lots to look forward to! Thanks for your wishes for Emily - we're so proud! !!! Xx

  • Psalms 46:10, ....be still and that he is God.

  • Hi Maz, I've just had a recurrence, four months after finishing first treatment, and it was spotted by abdominal pains, and a CA125 test (up to 121), and then a CT scan. I am 3c, by the way. I was hugely scared and depressed for a week, then saw my oncologist, and had a really good discussion. As people have already said, it's often better to do nothing. In my case, the cancer is still small, so we are trying hormonal treatment. I just wanted to offer you the knowledge that you will get through those awful feelings, and life will settle down, again, as much as it can, in our situation. The docs are really keen to keep us going, and there are several options.

    Great news about your daughter, and I hope she has exciting plans! Why not just tell them about your worries? It's not great for you to bottle them up, IMHO.

    Regarding diet, and this is just my opinion, I have read so much, and have plumped for a generally healthy, balanced diet, with little red meat, and not too much dairy. Really, you just have to find what works for you, I reckon, and beware the scare stories out there, which are often totally unscientific. I love a doughnut, now and then ;-)

    Sending love, Eileen x

  • Hi Eileen - I do have a much more positive outlook today - not letting it spoil my weekend and it's out of my hands anyway! I just hate the effect this hideous disease has on everything!

    You're right about the diet - I do eat pretty healthily but a little of what you fancy I don't think does any harm! Have chatted to hubby today so he kind of knows the score - unfortunate but it is what it is :-(.

    Sending love and prayers to all of us Xxx

  • Don't fear the worst, come share the positivity. My CA125 was 7, 12 and 14 now 47. Scan on Monday to see if it's back. Dreading knowing to be honest. I read some really interesting research which involved about 1m women to find out the usefulness of the CA125 test, one thing that came back was the CA125 is most likely to rise with serous cells. I had grade 1 serous and grade 3 clear cell, so if the slow grower is back then it's hardly a surprise I guess.

    Everything crossed for you, enjoy the weekend, it's raining here :(

    LA xx

  • Hi LA - do you know it's weird but after reading the replies I've had today from so many brave ladies the positivity has reached me and I'm feeling now - bugger this OC - it's had enough of my time and heartache! Have just come back from seeing Jurassic World - what a film! :-D:-D

    What will be will be - please share how you get on - much love Xxx

  • Maz, worring only makes things worst....try deep relaxation through guided imagery (you can find many on You Tube).

    Recommend the following "natural remedies"----1. The flaxseed oil and cottage cheese diet by Dr. Johanna Budwig. Sandra Olson has a good tutorial on You Tube. 2. Daily probiotics 3. Green tea ( Matcha tea very powerful) 4.cat's claw 4. Good multivitamin 5.ginger tea or ginger capsules 6. Turmeric tea or turmeric capsules 7.milk thistle capsules. 8. There are several great persons that give good info on You Tube, type "natural remedies" you get tons of info.

    -----excerse is very important. Read on "Bellacom mini trampolines" to clean your limphatic system. Bellacom is a good product, but very expensive, Amazon is selling something similar called Jumpsport pro fitness trampoline. Good luck

  • Thank you so much for those tips; I'll have a ferret on YouTube! Xx

  • HI Maz that is not a huge rise and best to wait and see what the scan shows. They do go by clinical assessment and it seems that there is no great benefit in starting chemo later rather than sooner. The ct scan could show stable and that is okay. I do feel your anxiety.. I have been down this road before, it isnt easy but this illness isnt easy. Thank god more drugs are coming on stream to send us back to the housework after four months. I am glad you took some time out and saw the film. It is nice and sunny here in Ireland Cork actually today. Was under the weather all week with a sinus infection and was too stubborn but had to give in so I am on antibiotics now and getting there. I was first diagnosed 2006 and am the road a long time. I am currently on Avastin which has actually shrunk the bits the onc was worried about, now they are not gone but that is good enough for me. My tip is to enjoy your daughters graduation, she has done you very proud in spite of all that was going on. Give yourself some treats now and again to take the focus off this dreaded beast. Wishing you the very best and keep in touch

  • Thank you suzuki - it's so good to hear from ladies who are still here years down the road! I agree it's not a massive hike and I haven't long finished antibiotics for a bout of infected eczema and now have a cold which I know can have an effect - will just have to sit tight until my appointment on the 30th - heyho! !!

    Keep well and sending love xx

  • Hi

    Just wanted to say I am in a similar position ,rising ca125a year out for first line completion fir 3 c. A recent Mri for bad hip pain showed fluid in my pelvis so I'm a bit more worried now. Just wanted to say thanks to everyone for sharing their stories and support. The isolation thus disease brings is truely hard

    Best of luck to everyone

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