Ca125 rising again even though I am on weekly taxol

[nikki9]

Went for 16th taxol was told my ca125 had risen from 650 to over 1000 really disappointed. My ca 125 started at 12000 so was really pleased it has dropped to 650 , now really scared the OC is fighting back again as I have been getting a uncomfortable tummy and I am sure tummy has got bigger, what is going on any ideas see my onc next Thursday thanks for this wonderful site it has been my saviour xx

[Hidden]

Hi Nikki,

I've no idea what's going on, but roll on Thursday...

Sending you my love and best wishes x G x

[Hidden]

Must be distressing Nikki, I am so sorry to hear that - try not to jump to conclusions. If taxol is not cutting it there will be a next treatment to try, different things work for different people. All you can do is wait and see what the onc says. Stay determined. Big virtual hug...

Love

Sue xxx

[Hidden]

Ask about rotterdam regimen, it gave us our longest period of remission to date. Love Paul xx

[nikki9]

Thank you all so much will ask about the Rotterdam regime cx

[wendydee]

Hi Nikki, the waiting us the worst, hope Thursday comes quickly for you. Just wanted to send you a big cyberhug (((xxx))) Will be keeping it all crossed for Thursday. Good luck.

Love Wendy

[nikki9]

Thanks so much Wendy I have quite a few questions to ask my onc . One is whether it would have any advantages in going to barts in London. Life is very precious hugs nikki x

[lisarm5]

Hi Nikki, sorry to hear your news but fingers crossed for Thursday. I see you're not too far from me,I live in romford. I am under barts, had my op there and they were wonderful, had my Chemo at my local hosp tho. Where were you treated? I'll keep my fingers crossed for you. Lots of love and stuff, Lisa xx

[nikki9 in reply to lisarm5]

I am being treated at southend hospital and I am sure they follow the same procedures , barts sound more advanced. My onc actually works two days at barts. I understand they have a new state of the art cancer unit with the latest ideas. Lots love nikki x

[lisarm5]

Hi Nikki, yes they have a new cancer centre there, in fact my surgeon is one of the guest speakers at the forthcoming members day. Lisa xx

[nikki9 in reply to lisarm5]

thank you for the information you sound that you were in very good hands good luck to you love nikkixx

[Whippit]

Dear Nikki

I'm sorry to hear the CA125 is on the rise and you've got uncomfortable feelings. I think you're right to ask for a second opinion and explore all the options. Barts sounds an excellent place to try.

I'll be keeping my fingers crossed for you for next Thursday. I hope you can find something really enjoyable to distract yourself while you're waiting.

This site is brilliant isn't it. Are you going to Members' Day?

Loads of love xxx Annie

[Niobe]

Hi Nikki,

I do not know on which treatment you are just now.

I needed to decide about my 3nd treatment (within two years) and I know how you are feeling. I heard good reports about the combination of carboplatin and caelyx from two professors. I also heard this combination mentioned in a conference organised by Ovarian Cancer Women in the USA . I opted for this combination. It has worked for me so far. Now I am on the 6th dose and I have to wait for the results of both a CT scan and further blood tests. When the moment of the reversal of good results comes it is frightening as to what the next choice in treatment should be.

Good luck!

It is a difficult moment.

Big warm hugs

from Niobe

[Jane]

It could be tumour die off raising the CA125, worth asking your oncologist about.

[Suzy]

Same thing happened to me. Weekly taxol worked really well for first 3 months , then it stall, then ca125 started to increase rapidly ,while still being treated.now have to decide between calyx or Rotterdam Regimen for next treatment. Best wishes Sue

[rmvf]

Hi Nikki,

Sorry to hear your news. Sadly I am in exactly the same position. Weekly taxol worked well for 12 treatments but after that my markers began to rise . CT scan confirmed that it was active again.

I am due to start GemCarbo shortly. Not sure how well this will work as it is only 10 months since I last had Carboplatin. My understanding is that the next option is Caelyx.

Good luck tomorrow.

Best wishes

Veronica

[nikki9]

My husband has written a letter to my onc and also went to see the oncologist nurse who was very helpful. She explained that my ca125 will never be 35 or lower but I will have my own marker relative to my OC and this is used in conjunction with the scan. She said that I will never be cured but controlled. It looks like I might have to have a few more weeks of taxol as I seem to tolerate it quite well. I still think that the OC has become more active as my tummy has got bigger. But see my onc next Thursday and do feel more positive. Thanks hugs to all xx

[Hidden]

Hi everyone, we have to hope that the next treatment is the one that works. We have been on this road since 09. Starting with carbo/taxol, followed by rotterdam, followed by caelyx/carbo, followed by weekly taxol, followed by gem/carbo. In every case the CA dropped but unfortunately the disease returns. The current treatment gem/carbo is at the halfway point but we anticipate a return within 6 mths. Trying to be positive is extremely hard but its all about control of the disease and it seems to be working. Love Paul xx

[nikki9]

Thank you paul it is such a hard road I really hoped at the start of this journey we would get a couple of years respite, but I suppose we have got to come to terms with it coming back and having more treatment. I don't know if you find the same but it has changed our way of life as everything seems to revolve about the hospital and side effects of OC.when will they discover some longer remission treatment. Sorry to moan I know we should be happy we are still alive. Hugs to you and your wife xx

[Hidden in reply to nikki9]

It changed our lives forever, having just met Sandra 12 mths before diagnosis, she was a fit and active person now she has difficulty climbing stairs or walking round shops before being out of breath. The one window of decent health we had in 2011 we got married, she had been single for more than 30 yrs. I am now her nurse, her doctor, her cook, her housekeeper, her driver etc etc.. it seems every week we are at clinic or treatment but we hope for a respite. Love Paul xx