carbo/ caelyx rising ca125

Hi all. Looking for some reassurance. My mum has had 3 lots of carbo/caelyx and her ca125 is still rising. It is now 398, from 298 at the start of this course of chemo. The nurses don't seem to be concerned by this but we have always thought of the ca125 as a really good indication of how mum's treatment is going. This is the fourth different treatment mum had had for stage 3c OC.

Has anybody else had a similar pattern with their ca125 rising, but have otherwise had a good response overall from the carbo/caelyx combination?

Thanks in advance.

[Whippit]

Hi Beth

I think this is something you should discuss with the oncologist. I've just completed my third line of chemotherapy and my CA125 dropped nicely but started going up as soon as I'd finished treatment which my hospital view to be platinum resistance.

I'm assuming this being the case if I have another line of chemotherapy, a fourth, I might expect the same pattern as your Mum with a rising CA125 despite treatment but that the treatment might be doing some good at the same time by controlling the rate of growth of tumours. These are just my thoughts and something I shall be asking about. I hope sharing my experience and thoughts are helpful. Your post has certainly been thought-provoking for me as I will now ask whether this is what I should expect as Caelyx with another drug has been suggested next time as part of a trial.

I really hope you get an answer from your clinician on this. xxxx Annie

[LesleyGreengran in reply to Whippit]

Sorry to hear that Annie. I hope you find something effective that's not too hard on your system x

[Whippit in reply to LesleyGreengran]

I going out with defiance Lesley. I'm determined to enjoy every moment of life and to have no regrets at the end of the day. I'm not going to be sad about something that was always going to happen and will do what I can to make the most of life's various challenges.

xx Annie

[LesleyGreengran in reply to Whippit]

Good to hear that and hope I'll be the same when my time comes. But are they not suggesting the alternative you mentioned might work?

[Whippit in reply to LesleyGreengran]

Having more of what doesn't work doesn't appeal. I'm not sure it's a good idea for me to accept therapies just because they're available if they don't work. They've mentioned two trials already but I've just had 18 weeks' treatment with no remission and I question the wisdom of spending another 18 weeks having treatment if I have no remission at the end of that - or worse still the tumours grow despite being on treatment. Of course this is a very personal 'take' on things but something I've been mulling over for some time with a lot of help and information from women on this site and how they think. It's why I'm so very grateful to have this resource and such wonderful honest friendships. x

[peanut2]

Hi,

I had Caelyx Carbo finished end Sept. My Ca125 started rising after the third and continued . My end scan did show deminished disease so although not what I wanted it did some good . Hope that helps xx

[Hidden in reply to peanut2]

That's just what we wanted to hear, thank you. We're only concerned about the ca125 if it is indicative of the drugs not working, but it sounds like that's not necessarily what it means.

[maz54 in reply to Hidden]

Hi beth - I'm on caelyx only as 2nd line - just completed 4th cycle. My ca125 didn't start to come down until after the 3rd cycle - was told this is a very slow acting drug so hang on in there. Can't really comment about it in conjunction with carboplatinum as not an option for me. Keep fighting xxx

[trix70]

Hi Beth,

I'm the same as Peanut , ca started to go up after three cycles. My ca is a good indicator and was very high. I finished the six , and was told it's more like maintainence, but now carboplatin resistant as it has not worked as well as two years ago. Now going onto weekly taxol as some of the tumours have grown.

But look at Maz's post, it works very well for some.

Best wishes x

[Hidden in reply to trix70]

Thanks for sharing your experience Trix. Hope the weekly taxol has the desired effect for you. Out of interest did you have a break between caelyx and then starting on your weekly regime or did you start straight away on taxol?

[trix70 in reply to Hidden]

Hi, More or less straight on to it. Had my last 4 weekly chemo on 26th Oct and today when I start again is five weeks. This was mainly my decision I think, when I was told the liver ones were bigger, ca still rising and I had started to get some pain, I wanted to start ASAP. If things had been stable I may have said lets have a couple of months off. But watch and wait in a trial last year did me no good, things spread and I want to be more pro active now.

[Hidden in reply to trix70]

I agree that it was the right decision to start ASAP. They've suggested that my mum will go on watch and wait after this course of chemo, but I don't think any of us like the idea of that. Like you, my mum always wants to feel that she's taking control of the disease. Good luck with your new treatment, I hope it is has the best outcome for you 😀.

[LesleyGreengran]

I've read somewhere that CA 125 can go up initially as the cancer cells get damaged and die off, so the nurses may think it's too soon to tell whether it will work in the end. Good luck.

[Hidden in reply to LesleyGreengran]

Really encouraging, thank you.

[Juejue]

Hi Im on my second line treatment carbo /caelyx , I had just Carboplatin for first one and my numbers rose to 800 then caelyx was added for no 2 ca rose to 1600 , no 3 up to 2654 ! So I'm getting very worried and I'm having awful tummy pains and digestive problems , I'm trying to hold my nerve, as sometimes ca doesn't drop till later on in cycle I have been told. . I'm so hoping that's the case for myself and your mum . Best wishes jue x

[Hidden in reply to Juejue]

I'm sorry to hear that Jue. Have you got a scan booked? I hope that your ca comes down soon. Xxx

[Juejue]

Hi Beth thankyou , had blood tests today and next treatment 3rd dec think that may depend on ca result , have fingers n toes crossed . Onc says she has a plan b and c so I've just gotta trust her judgement , have scan next couple of weeks waiting for app . Jue

[Hidden in reply to Juejue]

I wouldn't be too despondent about it. What I've learnt going through this process with my very precious mum is that cancer treatment is not a one size fits all approach. Sometimes it just takes some tweaking. Mum has just had the dosage of caelyx reduced as the side effects were unbearable, hopefully it will make a difference. But having a positive doctor who doesn't write you off is a fantastic positive, focus on that and good luck!!!

[Juejue]

Thanks again Beth will do , your mum is lucky having a great and positive daughter in her corner , hoping lowing the dose gives great relief to your mum . Jue x

[JPTjpt123]

Hi. After my 1st Caelyx my CA125 rose to 3000. The Specialist said this is not a true indication and I have to complete at least two more before they get a true indication. Anyway my second chemo my CA125 came down to 2000, which is a reduction of 1,000 which I am happy with. I am due to have my third in a weeks time and hopefully it will go down even further. At the moment I am having horrible side effects, i.e. diarrohea, stomach pains, back pains, some vomiting and a real loss of appetite. I don't feel like anything at all but have to force myself to eat at least something. Will talk to my nurse tomorrow to see if there is anything I can do to make me feel better. If you have any advice, please let me know.

I started my ovarian cancer journey 18 months ago when my CA125 was 5200. I had 2 litres of fluid taken from my stomach at the beginning then huge surgery then 5 months of chemo which helped a bit. Then I went on to tablets which did no good and made my CA go up again so they is why I am on the Caelyx. I have the Caelyx monthly so 3 down 3 to go, that's if it goes well. Anyway any thoughts and I wish you al the very best.

Kindest regards

Maria

[Hidden in reply to JPTjpt123]

Hi Maria. Thanks for your response. Apparently the standard caelyx dosage is by no means an exact science and lots of people have to have the dosage reduced as a result of the side effects. My mum's side effects were awful too so her dose has just been reduced by 20% on her fourth session, two more to go and the dosage is likely to be reduced further again. Mum's side effects were severe exhaustion, blistered hands and feet and ulcers all over her mouth. Her chemo was on Thursday so the side effects should start kicking in any time now, I will let you know if the reduced dosage makes any difference.

Mum presented in the same way with her OC in October 2013. She had 12 litres of fluid on her tummy and was misdiagnosed with IBS by her GP and A&E for 6 months.

Hope the caelyx continues to have the positive effect it is currently having 😀.