CT scan spread but CA125 down?

[fishtrombone]

Hello you lovely lot,

just joined and wanted to say Hello.

I'm a recurring clear cell ovarian now peritoneum sufferer whose cells maybe spreading even during chemotherapy treatment.

Just wanted to ask has anyone else managed to have a CT scan which shows that there may have been some spread of the disease but at the same time has managed to lower their CA125?

It seems to have left my Onc team baffled which in turn has left me asking why they are baffled. I'd have greater confidence if they had gone...Oh yes that happens all the time!

[Lyndy]

Hello and welcome! I don’t know a whole lot about clear cell but there are some fellow sufferers on here... weekends can be a bit quiet.

The ca125 is an interesting measure... for some it is an absolute guide but for the rest of us it is a bit like interpretive dance.. it may mean something but no one is quite sure what that is!

The best thing an oncologist told me is that OC does not play by the rules... so it is not unusual for oncologists to be surprised or even baffled....

You don’t say if you have any symptoms but they may ask you to go on watch and wait to see what happens. This may not be a bad thing because what ever is going on may become clear once they can compare results over say 3 months.

Best of luck... let’s hope it’s nothing to worry about xx

[fishtrombone in reply to Lyndy]

Hello Lyndy,

thank you for replying.

I was bobbing along quite nicely last year having finished my first chemo Dec 18. By June 19 I was getting sharp pain in the lower abdomen.

2 check ups later and I finally get someone to take it seriously and give me a CT scan last Oct which revealed a peppering of cancer in various places across the peritoneum. The latest CT shows a spread but the CA 125 has come right down. Totally contradictory but I think your Onc is right, there are no rules so we shall have to see how it develops.

Going to do a bit more bobbing along and see where it takes me. At least the pain is under control so everything is bearable at the moment.

Thanks again

Fishy xx🐟

[Flamingobeef18 in reply to fishtrombone]

Hi

Just wanted to second what Lyndy has said and add that my Oncologist reckons that Clear Cell is even more unpredictable and capable of very “weird “ things.

Juliax

[fishtrombone in reply to Flamingobeef18]

Thank you Julia, Its been really good meeting all the clear cell tribe as it gives a much clearer picture what an erratic and odd behavioural cancer it is. I had only met one other patient with clear cell o/c.

It's been really helpful finding out things I was unaware of. Not sure my Onc knows either.

[lesleysage]

Hello Fishy,

Lovely abbreviation for fishtrombone...made me smile as did your paintings on your profile page (assume your work?). Peripheral Neuropathy is a side effect you can certainly do without but so far I've found nothing to help, only taking every action slowly, thoughtfully and carefully....but 'life' gets in the way of doing this consistently for me.

Listening to what you've experienced, I suggest three things: 1. seek a second opinion at one of the major centres; where do you live?

2. Ring the Ovacome helpline 0800 008 7054 who will help you with second opinion if you feel that would help but also they maybe able to guide you on helpingyou support your son.

3. There is a research trial just on recurrent clear cell carcinoma at five different hospitals: Western General in Edinburgh for those living in Scotland, Christie near Manchester, Mount Vernon in Northwood (Hertfordshire?), Churchill in Oxford and UCL. It is trialling Pembrolizumab, the immunotherapy drug which has shown success in a few other cancers. If you want to know more about the trial, come back to me as to which of the centres running the trial is nearest to you and I'll do what I can to get the detail of the person best to contact at that site.

Warmest wishes and long may your pain be under control.

Lesley

[fishtrombone in reply to lesleysage]

Lesley, Hello!

This if fabulously useful information thank you so much. I'm in north Hampshire so have a direct train to London (about 40mins) or about the same to Oxford via Reading from my local station.

I'd be really interested in finding out more about the trials. Thank you. Have you participated yourself?

The neuropathy has brought me to a standstill on some days but rapid onset of heavy nose bleeds have been getting worse. I wouldn't mind if I thought that some progress was being made but the taxol so far hasn't cut the mustard and I have have become allergic to carbo.

The Avastin of which has been prescribed for 18 months hasn't produced any alarming symptoms so far other than adding to the neuropathy. We shall see. It is hard to know whether any of this is working.

And yes, that is one of my paintings haha. Just a bit of fun. Can't wait to get going again in the studio as soon as I'm not so clumsy.

Thank you for your help Lesley

[lesleysage in reply to fishtrombone]

Oh, thank you. the link to the trial detail:-

ctc.ucl.ac.uk/TrialDetails.... and the contact email is given in the box on the right-hand-side of the page.

I'm not on the trial as I had an amazingly lucky break at my second occurrence in 2013 and took a second opinion with Professor Christina Fotopoulou at Queen Charlotte/West London Gynae Cancer Centre & she and her team were able to remove all my clear cell tumours, and so far, no further recurrence -

imperial.nhs.uk/consultant-...

If you Google her there are video clips of her at Ovacome.

Nose-bleeds: I had these with Avastin. One of the devasting things about clear cell, and the reason the clinicians are doing this trial, is that it is known to be particularly resistent to carbo/taxol. While you are well, please follow up all these leads I'm sharing as there maybe a chink of help in them.

Warmest wishes and please let me know if my contacts are abel to help, even a little. Lx

[fishtrombone in reply to lesleysage]

Yes I had the feeling that I was just having treatment for the sake of it without gain. Especially as it is known to be resistant to those treatments. It is just wasted energy.

Thank you so much for your help Lesley. It's opened up more options and that's brilliant.

I will keep you up to date

[lesleysage in reply to fishtrombone]

The only other thing I've thought of is that my GP, very wisely, focussed my attention on 'growing healthy cells' by which he defined as "eating well, exercising well and resting well". He knew me well enough to know the last part would be hardest for me, but have, and continue to perserve with this. Your painting is, I imagine, a good hobby for 'resting well'.

He was really keen I took the 'best possible body condition' to clinicians - if I presented them with a healthy body, they had better options to consider how best to help me.

WW, L x

[fishtrombone in reply to lesleysage]

That's a good point. I will bear that in mind.

All of those things are dependent on how well I feel at the time and I'm sure when I am no longer getting treated by taxol I will feel a lot better. Rest is pretty good but exercise has proved tricky with numb feet. And my appetite is variable.

[lesleysage in reply to fishtrombone]

Just an add-on to my GP's advice...by 'exercise well' he did NOT mean to the point of feeling exhausted, but 'being tired' by exercise was ok...then rest well.

L

[fishtrombone in reply to lesleysage]

Thank you Lesley you're a star

[annmary12]

HI and welcome I have stage 4b OC with the disease in the lung and bowel my CA125 is down to 9 but I still have cancer

[fishtrombone in reply to annmary12]

Hi annmary12,

it is a contrary thing for sure. I'm going to ask on Tuesday how it is spreading at the same time as the tumour marker drops. If I get an answer I will let you know!

[Grace123]

Hi I echo what Lesley recommends in her first response particularly. I was diagnosed with clear cell stage 1c3 in 2015 and had a recurrence in Sept last year. I'm under Prof Ledermann at UCH and am very happy with him and my team. I'm waiting to start on the immunotherapy trial Lesley mentioned that UCH is leading on - still waiting outcome of third biopsy - long story .... I strongly recommend you get a second opinion with UCH - your oncologist should be happy to make the referral for you - or speak to your CNS about it. Wishing you the best of luck with all this xx Sundra

[fishtrombone in reply to Grace123]

Thank you Sundra,

I'm hearing some good things that are happening and it's such a relief to not only have found the clear cell tribe but to have found those who have experience of the various trials that are available at the moment. I must admit I had no clue that such a rare form of cancer would have so much research happening.

I'm seeing the onc tomorrow and shall see what he says.

Thank you

xx

[Grace123]

Great - we're lucky for this trial. I've heard that Pembrolizumab, the trial drug, is the "champagne of immunotherapies"! It's already licensed for other cancers and has less side effects, etc. I think Dr Kristeleit at UCH is leading on this trial.

[fishtrombone in reply to Grace123]

And I do like a bit of champange! I have some good messages concerning this trial Sundra. Going to do some digging. Thank you for your help! Sheila xx

[Cropcrop]

Hi, welcome to our lovely gang, you’re really welcome and I hope we’re able to help and support you here.

I was diagnosed clear cell in 2014, my CA125 was never really high so it isn’t a good indicator for me, but I was really symptomatic. Clear cell is a funny one though and we’re all individual so don’t always present in an expected and recognised way.

I guess the good thing is that a scan has shown the recurrence and a treatment plan can be arranged.

I hope your team are able to sort this for you speedily. Take care ❤️Xx Jane

[fishtrombone in reply to Cropcrop]

Thank you Jane,

this really is a lovely gang! I've had a fabulous welcome and lots of really good advice.

I think our collective experience alone is priceless.

I am definitely having a jolly good chin wag with my oncologist tomorrow. There are options and other avenues which I didn't even know were available.

I shall keep you all informed where this takes me. As the newest clear cell gang member...thanks chaps!

Fishy xx🐟

[shortfriends]

Hello Fishy I sent you a reply to welcome you to this forum but is has disappeared, I am away to look in the macmillan forum!! Hope everybody is as well as can be on both forums. Lovely people in both! xxpat

[fishtrombone in reply to shortfriends]

Hello Pat! 🖐

Thank you for the lovely welcome. Roobarb1 found me on here too haha.

So nice to find the ova crew. It's been really helpful with the really specific medical questions. Especially when you have a really tricky cancer like clear cell!

Been really lovely meeting everyone on here too. I've had so many questions answered and you know I do like asking questions lol.

Look forward to chatting to you on here too

Fishy xx

🐟😃

[susras]

Hi I have stage 4 clear cell ovarian cancer and my CA125 has never been that high. Last count it was 37. Fortunately my doctors just use ar as a guide. When in remission last year it was 9. On a routine check in December it jumped to 28 so alarm bells rang and I had a ct scan. This showed the cancer had returned to my periterneum liver and I think lung . I am actually not particularly I'll at present but the diagnosis is not good. A question of keeping me going as long as possible. I am currently trying to get on the peacocc trial in London. As chemo clearly didn't get rid of it although it did suppress the cancer for some time. Have you looked at any trials?