CA125.......JUST KEEPS ON RISING!!!

[thehusband]

Brief history. Wife diagnosed (stage 3c high grade serous OC) in Oct 10. Dec 10 hyster etc. Jan- May 11 Carbo/taxol. Nov-Dec 4 x weekly Taxol. Jan 12 - Jun 12 gem/carbo. In Jun 12 CA125 = 106 the lowest it had ever been.

Pains started again in Aug 12 & CA125 = 236.

Started caelyx late Nov and have had 3 sessions. CA125 has gone 2318, 2576 & now 3168.

Last figure is before 3rd Caelxy last week.

I know that CA125 isnt the be all and end all, but for us its always been a v good guide to what going on. My wife feels fine, well tired but fine. Nor does she know her CA125 levels, we had decided back in Aug not to ask for them, but i still got them and kept them from her cos not worth her worrying as well as me, she has enough to put up with anyway.

Have scan 1st week Feb and results 2nd week Feb. Obviously i am expecting bad news and of course my wife will then be party to it.

SO.....after all that my questions are:

1: Has anyone had Caelyx and found the CA125 levels took awhile to drop. Reason for this is Onc obviously knew levels were rising so wonder why they continued and gave 3rd one.

2: Anyone had carbo with caelyx?....heard thats had some results.

3: If my wife goes onto another chemo this will be her 5th line so we are kinda running out of chemos to try and will probably end up on a trial.......anyone on a trial that has given cause for optimism.

Really i am just trying to formulate some questions for Onc once we see them after scan.

Thanks and good luck to one and all.

[Hidden]

I am sorry I am not much help, but it is a good idea to get your questions ready, and try not to be side tracked from them, sometimes they answer a question with perhaps the one before, so then of course you can skip over it, but I find they do tend to not want to answer some questions, so I have learned to be persistent if you really want the answers I hope you will get clarity best wishes love x G x

[Hidden]

Hello again.

I have read many times on the Inspire forum that CA125 levels can rise with Caelyx/Doxil, particularly over the early treatments. That said, the scan will give you some definitive information. Are you still dealing with the same oncologist?

[Coco]

I feel so much for you and your wife. I too was diagnosed in Oct 2010 and and am just on my fourth line chemo, weekly taxol. I had Caelyx second time round but only had one dose, it didn't do it for me. I too have been about a trial but currently chemo is working so have put that aside for the time being.

I hope that the scan gives you better results than you are expecting. I heard of a lady at my hospital recently who knew her markers were rising and that she had to have more treatment but wanted to go travelling for some months. She did her travelling and is now back on ttreatment and her condition didn't worsen.

My very best to you. Not much help but its just nice to know others are in the same boat.

Coco xx

[thehusband]

Thanks ladies....

Bellabee, i am glad you mentioned about rising in early treatment, because i thought i had also seen that somewhere, of course it doesnt mean its working - but it may be. Yes, same Onc, well same one since Dec 11.

Coco you seem to be travelling a similar path to my wife......hope chemo keeps working for you

I guess its just a waiting game now for the results of the scan once she has had it ....and you all know the apprehension in doing that.

Ladies....i salute you.

[Hidden in reply to thehusband]

Hi there... I was sorry to hear about the CA125 results. I don't have a rise at all and my levels are normal, even though I'm Stage 4, which is one of the reasons my cancer wasn't detected. Doctors tend to track it to see how far it moves which is a better indicator than just finding out the initial number as it can be high even in people who haven't got the disease. Inflammation in the abdomen can cause the number to go up as can other benign conditions which can co-exist with cancer. I was wondering whether it might be worth calling the staff here to ask for some advice about levels rising at the beginning of treatment as this may be usual with this type of drug. Or, maybe you could ring your wife's Cancer Nurse Specialist who may know about the way this particular treatment pans out in terms of rises and dips of CA125. I know what the results appointment is like so my good wishes go out to both of you for good news ...

[thehusband in reply to Hidden]

Thanks, i know the nurses will just say its not a defining art, and i know they are right, but i also know with us (till now at least) it has always reflected growth, so i am thinking - yeah its growing. BUT, and its only a but, someone mentioned, and i thought i had heard, that in many cases with Caelyx it does take a few sessions for some.....cos the scan is next week i guess we will just have to wait and see and hope.....good luck to you.

[suzannehadenough]

Hello sorry im not much help either. But wanted to wish you and your wife all the very best and to say she will be in my thoughts when she goes for her scan.

Lots of love

suzanne.. xxx

[thehusband in reply to suzannehadenough]

Thanks and ditto.

[thehusband in reply to suzannehadenough]

Thanks.

[thehusband in reply to suzannehadenough]

Have to say i love your user name.

[suzannehadenough in reply to thehusband]

Thank you. I have had enough. Lol. X

[Lily-Anne]

I'm sorry to read you are having such a heart wrenching time, when I saw my oncologist she was talking about CA125 as mine had been normal, she said that it isn't really a good guide as she has seen levels of over 5000 with no cancer. Have you thought about a HE4 blood test?

LA

[thehusband in reply to Lily-Anne]

Thanks for responding, not thought about the HE4, guess we will just have the scan next week and see whats what....if the scan is positive ish, then nothing else (CA125) matters......if its not, well ..... its not, and we will deal with it....

[Hidden]

I am so sorry to hear this and think you are being such a great support for your wife. am sure there are some explanations for this which aren't simply about a linear progression of this horrible disease though can't contribute re caelyx, but:

This is a slight divergence from the main question but are you doing all you can in terms of the integrative treatment stuff including diet? I am reeling from reading the anti cancer book by Dr Servan-Schreiber right now as so many things it talks of resonate. Much if it is about helping body reduce inflammation (which is what ca125 measures in large part) through diet, plus stress management What struck me though were the tales of how some people on really difficult paths were able to improve things - not cure, obviously, am a lifelong sceptic of those stories, but to help their bodies out which slowed everything down generally and significantly. There are lots of approaches to this (Budwig protocol, etc) which sound a bit too aggressive to me but the principles of helping your body help itself sound so right.

Just thought worth mentioning in case it's one thing you haven't thought of

Love

Sue xxx

[thehusband in reply to Hidden]

Hi and thanks for responding. As far as diet etc goes, well yes and no. Yes in sofar as she has the anti-cancer book, and this was even before she was diagnosed. No is as much as she doesnt follow any particular 'regime'. She has tumeric & ginger supplements, her diet ever since we first met is way ahead of her time as far as healthy etc, always exercised, drinks in a year what i guess the average person may drink in a week etc etc

As i have said before i guess we will just wait to see what the scan shows next week, now its possible (I guess) that the 'acid reflux ish' symptoms she has had since Caelyx could mask CA125 results, as could 1 or 2 other iffy things.

But, because her levels have always risen and fallen in line with tumour growth, then i am only expecting bad news and a move onto another trial/chemo.

I will of course update this once we have results in a couple of weeks.

[Madz]

I really hope that your wife's results are good and that the rising levels are not indicative of a return. I can't help with any practical information because I am at the early stages of my treatment bit just want to offer support and hope for all the best luck in the world for you both.

Hugs Amanda

[thehusband]

Scan results today were as bad as we had feared and Caelyx chemo has been stopped for us. Back to see the Onc on Wed to discuss a phase 1 trial (not sure what yet) - unfortunately original tumours are now much larger, new ones around (but not on) her heart, up in her neck (throat) and throughout her abdomem.

Even though i expected bad news its always a bummer when you get it....my wife is naturally very scared (as am I) but thankfully, like all you ladies, she has the inner strength to give somethiing else a try....so onward and hopefully upward