Just some advice please!

[NIKKibailie]

Hey everyone. Happy new year. I’ve a clear cell adeneacarcinoma and have a hard month ahead waiting on last few chemo and scan results. I’m going slight mad with worry and trying so hard not to think about it. I’ve had a car crash of treatment at Ipswich my hospital and thank god am now under prof lederman at UCLH. The thing is, I had a scan after 2 Chemos as I pushed for it due to being neutrapenic for 3 weeks and they found a tumour on my diaphragm 3.4 cm and they are unsure about changes on my omentum. ( I had some removed after my hysterectomy (5cm then) but complete surgical removal so the diaphram was a shock and must have grown from sept 5th to nov 20th. I didn’t have a base line scan at chemo and also they’ve missed lots of my ca125. What I do know is that when I first had a cyst on ovary in April it was 24, in August after my cyst removal and diagnosis of stage 1c it was 40, they didn’t do a ca125 when I had my hysterectomy, in Oct after 1chemo ( no ca125 at start can you believe!) it was 79 and after 2 chemo is dropped to 21 and is now steady at 17. Do you think this is encouraging? I just want to imagine the tumour is shrinking? Has anyone had this with ca125 dropping and there tumours going away???? I just feel so alone and worried and usually can flip it but at the moment I’m feeling desperate. As I’m under UCLH Im thinking after I get results of scan at end of Jan I’ll have options of trials under lederman, either maintenance ( fingers crossed ) it patriot or more surgery but as I’m clear cell it’s a bit more limited. I’ve had some good support from some clear cell ladies on here. I’m 40 and just worry so much about leaving my young kids... Anyway, some advice, reassurance, coping methods?! Xxx

[lorraine71-Australia]

Hi Love, I can't give you much advice about clear cell but your 125 sound very encouraging and you have a good team with you and a lovely family to look forward to many many years ahead Take care Lorraine xx

[NIKKibailie in reply to lorraine71-Australia]

Thanks for taking time to respond. Xxx

[Artgreen]

I’m afraid I don’t have any experience of this particular type but your ca125 sounds good. Anything under 34 is good. I’ve seen on this forum where cysts and tumours have shrunk on their own and even disappeared sometimes.

Being in the now ( meditation, counselling ) and patience are the biggest lessons I’m learning with this disease. New treatments are emerging all the time too.

Very best wishes and take care of yourself

Alex x

[NIKKibailie in reply to Artgreen]

Thanks for all your advice! Being a yoga teacher you’d think this would all come naturally but In reality it’s hard!

[Artgreen in reply to NIKKibailie]

Ain’t that the truth. I’m a psychotherapist and instantly became a 3 year old when I was diagnosed. Xx

[Neona]

My ca125 was 67 at diagnosis and 9 after frontline chemo started but I had recurred by my end of chemo scan. I have clear cell stage 3C. I don’t think they bother much with my ca 125. I am on the Patriot trial at UCLH.

[NIKKibailie in reply to Neona]

Thanks neona. Did you get results from your scan? I think you were going before xmas? What was your ca125 at the end of your 1st chemo? When did it start to go up? Did you go straight on patriot? He’s mentioned he’ll put me on one in Jan but I’ve no idea which trial as it depends if I a evidence of disease. Sending love and best wishes and Thankyou for taking time to respond to me x

[Neona in reply to NIKKibailie]

I have never had another ca125 result as it is not a good marker for me- they just seem to go by scan results. My last scan was still stable although the largest mass had increased very sightly but the others, including liver, had reduced further. I reckon I am very close to a partial response. My next scan is on 16 th January so am quite anxious. Unfortunately have been pretty ill with chest infection, cold and now flu- seems no end to the misery.

[Neona in reply to NIKKibailie]

They tried to get me on an immunotherapy trial first but the sponsor didn’t want me so they put me on the Patriot trial last Christmas.

[Neona]

Don’t despair as you are already in the right place and hopefully the chemo is working. I was one if the unlucky ones but there are treatments out there.

[NIKKibailie in reply to Neona]

Thanks! It’s so good to know you’re at UCLH and had good experiences x

[Grace123]

Hi I also was diagnosed with clear cell stage 1c3 and transferred to Prof Ledermann at the end of my treatment. Prof Ledermann is amazing - it's so good you're under him - not only is he an amazing clinician with huge experience and a leading world researcher, but he's also a fantastic communicator. Let him know all your concerns, ask him to clarify what your current status is and what all your options are and the pros and cons for each, and ask him what he would recommend a member of his family if they were in your position. The fact that your CA125 is coming down seems like a good thing to me. I'm afraid I can't comment on your medical stuff - but being under Prof Led is fantastic news. When I've felt really concerned in the past, I have emailed all my concerns in bullet point form to Prof Led and sent it to his medical secretary to forward to him. The only time I've done this he's replied within a few days and set up diagnostic tests for me.

I completely understand your worry, especially when you have young children. I teach mindfulness, but really struggled psychologically through diagnosis and treatment - this is completely normal - it's traumatic - so get as much support as you can. I used to ring Ovacome and Macmillan regularly for support - and that was also really helpful.

I wish you the very best, and please know that you have one of the best Medical Oncologists in the country looking after you, and that you'll get the best treatment you need. Huge love & hugs xxx Sundra

[NIKKibailie in reply to Grace123]

Thanks so much for this. I am so lucky to be under him and so hopeful the chemo is working. Did chemo work for you? As in did you need anything treating as you’re 1c? That’s how I started. I got in early with lederman and he will be the man to tell me the results at the end of the month and it’s good to know about his communication skills as that’s been such a car crash at local hospital x

[Grace123]

Hi My pleasure. I had a total hysterectomy followed by 5 cycles of carbo-taxol. I was diagnosed in Nov 2015 and have been in remission ever since. I struggled through chemo, which is why I only did 5 cycles in the end. But recovered well from it & have been feeling well ever since. Great that you're getting your results, etc, from Prof Ledermann - you can trust him and know you're getting the best care you can. You're in safe hands - it really makes all the difference. Wishing you the very best xxxx