CA125 static but not good

[minard]

Hello everyone

Having had 4 rounds of carboplatin with caelyx, I was told that it wasn't working in March and since then have been on watch-and-wait with ongoing discussions about potential trials etc.

My CA125 levels rose to around 700 in February but stayed the same level in March during the chemo. Obviously not good but I have just had blood results done through my GP as I was curious as to how bad things were getting (!) and the reading is roughly the same (at 666).

I've not been convinced somehow about the lack of response to the carbo/caelyx treatment and the fact that I'm now supposed to be platinum resistant. Does the fact that my CA125 numbers are static for 3 months mean anything at all? I know that my last CT scan did show some slight disease progression but I really feel that perhaps we gave up too soon.

What do you all think? I'm no fan of chemo but it doesn't make sense to me that 2 months later without any treatment it's no worse - and indeed I still feel fine...

I'm not looking for reassurance - just to find out if this sounds like anyone else's experience. Thank you x

[Lily-Anne]

I think stable is good and that is the outcome they look for in chemo. I think they are often reluctant if the change is not a significant one, but it is your body and if you would like another dose then I would push for it, or at least ask for some real reasons as to why they do not want to proceed. Sometimes their hands are tied by NICE guidelines so I would have a quick flick through the manual so you are armed with answers.

LA xx

[Hidden in reply to Lily-Anne]

Yes stable is good and as long as there is very little progession you are okay. I do wonder why they stopped at no 4 though. Sometimes we tend not to question the specialists and we actually should as its our lives

[minard in reply to Hidden]

Thanks Suzuki. I guess that I hadn't really viewed this as "stable" - but of course it is!

[minard in reply to Lily-Anne]

Thanks - I may well be in a state of denial just now, but I do want to know what's going on!

[dryden1]

I with Suzuki and Lily Anne , I am no expert but to me stable is good. I don,t know about you but I have also been told that Calyx is a slow burner and the optimal result takes time. I had my second dose of Carbo and calyx yesterday.So I think I would question why it has been finished.

[minard]

Thanks. I've got my next oncologist appointment on Wednesday so will ask again

[Hidden]

I too was on carbo/caelyx & I too have heard that Caelyx takes a while to do its duty. It got me into a good remission. My understanding of platinum resistant is that it's declared if your cancer returns within 6 months of completing 6 months of chemo. Good luck. Pauline.

[minard in reply to Hidden]

Thanks Pauline. I've heard there's another term "platinum refractory" which means the cancer progresses whilst on carboplatin. I'd like to understand at what point this is decided - the disease did stop progressing...

[lorraine71-Australia]

Hi Minard I had caylx on it's own and after 5 month was told my 125 would not go down further but a month after I finished it drop 10 pints more, I feel should have continue with the Caelyx.

My 125 is going up so now I'm on Carbo/Caelyx be course I had some success with both. I've just had my first treatment. but it is good that it's no worse over the 2 month for you, if you are platinum resistant may be single Caelyx is the go, you could ask if only to set your mind at rest. Cheers sending you my best wishes ..Lorraine xx

[minard in reply to lorraine71-Australia]

Thanks Lorraine. This is interesting to read. It's difficult to understand why treatments are sometimes halted when they appear to be "doing" something, isn't it? I think your idea of single Caelyx is a good one. I'm going to ask next week at my appointment - good luck to you too! Caroline x

[lorraine71-Australia in reply to minard]

Hi Caroline, I was thinking about you to day, How did you go with asking about the single Caelyx ?

I hope you have a treatment plain in place..Best wishes Lorraine 💙

[minard in reply to lorraine71-Australia]

Hi Lorraine. Thanks for asking. I'm currently experiencing cancer related pain and a build up of ascites which unfortunately started during my long awaited holiday to Italy. I am waiting for Monday morning to call the medics for advice as I haven't started my trial yet. It's looking at Olaparib for platinum resistant patients amongst other things. I'm very scared that I won't meet the criteria now....

How are you doing in the Blue Mountains? I checked out your profile!

Caroline x

[lorraine71-Australia in reply to minard]

Hi Caroline, Sorry about the pain hope the medics get it under control as soon as possible. My husband is Italian and we went to Italy just before I was diagnose what a great holiday, I would love to go again.

I have looked into Olaparib and it seems to be very interesting so also hope you get the chance to try it.

As for the mountains we are having the wettest June in years. but the garden is loving it...sending you my best wishes Lorraine 💙

[Tracex]

Hi im starting single caeylx on 24th hopeing my bloods drop they are 900 but have bein told probably take 3 cycles to show any drop in bloods xxx

[Julie40]

Hi. I had carbo/caleyx and it was definitely a slow burner. It was rough going too as my last 2 treatments were a bit of a struggle but I seen them through. After it was finished my scan showed only 30% reduction and I was gutted but it was enough to get me on another trial.

On a positive note when I was upset about the slight reduction my Onc was really encouraging and reinforcing how good stable was and any reduction was really positive so hopefully this makes you feel a bit better. I've had the same 2 active cancer sites that were there when I finished caleyx and that was 16 months ago. Well actually there's 4 now but I'm still classed as stable. I'm happy with that xo

[minard in reply to Julie40]

Thanks for this Julie. Some days I feel completely at ease with the situation, and other days I go off into the usual "what ifs..." I guess you've just got to get on with life, don't you? It's reassuring to read your story - long may your stability last!

Caroline x

[Julie40 in reply to minard]

I get those days too but I'm too stubborn if nothing else to let them take hold. Not easy sometimes but this might sound awful but it is something that I always remind myself and my children when we feel sorry for ourselves and the "why us" happens - I could have walked out the door and been involved in a tragic accident or died instantly from another condition. Pretty grim I know but it makes me and them realise how precious our lives are here on earth every day.

Thank goodness for this forum as we can shield our loved ones from the deep dark feeling hopeless days xo