Caelyx and RISING ca-125

Anybody has any idea about Caelyx? My Mom took her first cycle of Caelyx last month and her CA-125 has tripled since then (from 74-250).  Is this normal?  I've heard that Caelyx usually kicks in late, but I mean such an increase is rather alarming...  I would appreciate any feedback.  She has her second cycle of Caelyx tomorrow.  We are hoping for the best and praying of course...
Thank you all for being so supportive,
Nayiri

[Barney22]

Hello there - I was on Caelyx October and November and my CA125 also went up very smartly - doubled in under 4 weeks and my symptoms seemed to get worse if anything.  It continued going up during the 2nd cycle so my oncologist took me off the CAelyx after 2 cycles.  I was a bit surprised as I also had heard about it kicking in late from other women but I took his advice.  However, to my astonishment my CA125 has dropped quite a lot since then so I don't know what to think!  I will be having another blood test in a fortnight to see if the fall is confirmed and then we'll have to think again.  I sympathise with you and your mother as it was pretty frightening having the CA125 rising whilst on chemo.  Jenny

[Nayiri]

Dear Jenny,
Thank you SO much for writing!! If I understood correctly, you stopped the Caelyx after the second time, and that's when your CA started coming down, right? Are you on another medication now? I really wish you the best of luck. My Mom has been having a horrible week, with a lot of naseau, vomitting and just feeling lethargic really... I will tell her about you. Over here, there are NO support groups of the sort. And reaching out is so important... Our prayers and thoughts are with you!  
Nayiri

[Nayiri]

Hi all,
My Mom has Ovarian CA stage 3c.  She had a surgery and was on Taxol and Carboplatin, then on Carboplatin Management therapy until in August her body stopped responding to these medications.  Now that she is on Caelyx (she took it only once in December) her CA-125 has tripled to my dismay!!  Her doctor has told me that once a person stops responding to a firt-line treatment, the chances for her to respond to another medicine are very slim!! I want to be hopeful and I also want her to stay positive.  I am doing my best, although it is tough when she has more bad days. I read something about Ginger, and even an abdominal ginger wash; how feasible is that?  Would ginger supplements help? Have any of you had any experience with Ginger Capsules?  How about supplements, or things to up the immunity?  I read about macrobiotics; I'm ready to help her try it. But she is not convinced about macrobiotics...  Please share your ideas with me.  I feel so lonely and down. My Mom is not ONLY my Mom, she is my best-friend and my sister and it hurts so much!! Do any mushrooms help?
My prayers are with you all,
Love,
Nayiri

[Nayiri]

I don't know how to address this letter to you. I'm still new in this forum and I read several entries you've written about your Mom.  I cried when I read them. My Mom also has Overian Cancer Stage 3c, and she has stopped responding to Carboplatin and Taxol. Now she is on Doxil, but her CA has gone up high (tripled) since last month. I am so scared of what will come next... If only our love could give them hope and health. Please write to me.
Nayiri

[unmai]

Dear Naiyiri,
I know how you feel.  Trust me, I can relate.  My mom is in the exact same situation.  She was diagnosed 3 yrs back and has had 2 remissions for about a year each with taxol carbo.  After that she became resistant to carbo.  They tried gemzar - it failed.  Now she is on doxil.  She has had 2 rounds so far.  After the first round of doxil her ca125 doubled!!!  After the 2nd round, it fell a little. The side effects she has are not fun either - she can't swallow solids and she has ulcers (it burnt her GI tract!).  We are now trying to decide if she should take the 3rd cycle or try some other drug. I am syaing all this to let you know you are not alone. If i can help you in anyway, please do let meknow. We too are praying and trying to figure out what to do next.  Surely your family is in my prayers.  With God, all things are possible.  
Take care and keep your faith,
Unmai

[Barney22]

It's important I think not to assume your mothers won't respond to 2nd or even later treatments.  If you go to ovca.net you will find a host of women who have been surviving on regular chemos of different kinds for quite a few years.  It doesn't work for everyone but it does work for many.  Don't get too down hearted if the Caelyx (Doxil) doesn't work at first - some women have said it took 3-4 cycles to see any improvement in their CA125s.  Even if Caelyx doesn't work there are other regimes to try - one journalist who has cancer here in the UK compared it to having oncologists throwing different apples to her until she managed to catch one of them!  That is they have to experiment in a way with us as there is no real test to see which one will work for individuals.  Jatoo on this site and Helmar are real mines of information about recurrence chemo - see if they can help.

[Helmar]

Hi All...I had 4 treatments of Caelyx, and my CA.125 went 'through the roof' during the first couple of treatments. It actually took 4 before I got great results.. and the CA.125 kept on dropping for 3 months after I stopped taking the Caelyx. The only reason my Oncol. stopped was that it's quite harsh on the heart, and although I don't have heart problems, he wanted to 'keep it up his sleeve' for a later date, if needed, as we know that this works for me. The only bad side affect I had was terrible large mouth ulcers, which were very painful, but I'll tolerate the pain, if I'm getting some gain. I can't understand why the Oncol. would stop after only two treatments, as it's a recognised fact that this drug doesn't 'kick in' until at least 3 or maybe 4 treatments.
Some ladies get very sore hands and feet, but I was lucky in that respect, so I hope the side affects are not too harsh for your Mum.
Wishing everyone all the best... and hoping for low CA.125's for all.... best wishes..Helmar...

[Barney22]

Hi there - I've been thinking about your comments (and Jatoo's also I think) about stopping Caelyx after only 2 cycles.  I suspect my oncologist's decision and those of others rest on a couple of important factors - evidence based medicine and the Hippocratic oath (first principle - physician do no harm).  Whilst you say it is well known that Caelyx can kick in late, I asked another medic involved in cancer differently and he said there is no data or report from clinical trials to back this up.  In other words, there is good anecdotal evidence as seen on this and other patient websites but no real hard clinical evidence.  Some oncologists will have seen this happening (ie late effectiveness) but others may not and its a risky choice to make.  The main problem is Caelyx only works for approx 20% of women anyway - that is evidenced from the original trials.  Oncologists have a choice therefore - do they risk continuing with Caelyx for a patient when there is no sign of it working knowing those statistics or do they call it a day earlier in order to halt  disease progression by transferring the patient to something which might work better?  If they have seen it work early with other patients then they well not want to take the risk of continuing especially where patients can say they feel their disease is still progressing whilst on the drug and they have evidence of CA125s rising rapidly.  I suspect the drug company should do some proper research on this!  I don't think they will not least because new drugs are coming along all the time which oncologists are turning to earlier.  What do other people think?

[Helmar]

Hi... I guess Caelyx is like most other chemos.... it works for some, and not others. It's more or less 'trial and error' with any of them, as we are all individuals. I didn't have any success with Topotecan or Gemzar, but did try them, although they work for other women. My Oncol. wanted to stop the Caelyx after 3 treatments as he felt it wasn't working for me either, but after reading a lot about it, and hearing other opinions from ladies who had been on it, I pleaded with him to let me have 4 treatments, and it was after the 4th. that the results came along. My CA.125 dropped dramatically, and kept coming down for 3 months after I'd stopped the treatments, so we are keeping this one for a 'rainy day'. It's apparently quite harsh on the heart, and so it seems that's one reason why Oncols. don't like to prescribe it for too long.
You are right.. there are many other drugs coming along, and at the present time there is a Phase 3 trial taking place for one called Phenoxodiol. The trials are in the U.S. Europe, and Australia, and it's looking really good. They've had good feed-back for Phases 1 and 2, and if Phase 3 is successful, then they say it will be available in 12-18 months. My Oncol. offered me a go at this trial, but there was no guarantee that I wouldn't get Placebo and Carbo instead, and with a CA.125 of over 7000, I didn't want to take any risk.
I hope everyone is feeling well, and the treatments, (whatever you are all on) are working fine too.
Best wishes...Helmar..

[Nayiri]

Dear unmai,
Thank you SO much for writing. It is comforting to know that we are not alone in this. You and your family will also be in my prayers. Mom has been feeling rather tired these days--more tired than before. We are waiting for the next Caelyx cycle which is in almost 20 days. That's all we can do I guess--wait and hope, hope and wait. My sister is coming to visit us with the kids (two beautiful boys) so I'm hoping that they will change her mood.
God Bless,
Nayiri

[chemoqueen]

Hi,
i have advanced Ovarian Cancer stage 3.

My very first treatment was Carboplatin and Taxol which unfortunately my tumors did not respond, infact they had grown after 3 sessions.

My second treatment which i am currently on now is Caelyx, i am close to having my 10th session.

Luckily for me i have had no side effects other than tiredness during and on the day of having treatment.

My CA 125 has dropped from 1198 since November and is now 388. Last month it had dropped to 265 but since then i have had a urine infection and hopefully that is the only reason my CA 125 went up slightly.

Also my tumors have not grown and have stayed stable.

I know not all treatments are right for everyone, but so far this treatment has been more positive for me than anyone ever thought it could be.

Stay strong and be positive

XX

[chemoqueen]

Hi Everyone,
                   just to update whoever is interested.

I had my 10th Caelyx yesterday and i am pleased to say that my CA 125 has dropped again.
Last month it went up slightly as i had a urine infection and was just a couple of days short of finishing the course of antibiotics and my CA 125 was 388, this months CA125 is 351...

[MAMMYSBOY]

Hi everyone

My Mother was diagnosed with ovarian cancer last November.
She had a leg clot and huge stomach bloating. She was imediately started on taxol and carboplatin and drained of 11 litres of fluid. On the second session of chemo she had a very bad reaction to the taxol and she nearly died so they decided to continue with the carboplatin on its own. She had 6 sessions in total followed by a full hysterectomy in May of this year. Her bloods were perfect and the doctors were delighted with her. Then 2 weeks ago she filled up with fluid again and a scan has shown a tumor on her intestine. Now they have decided to start her on CAELYX next tuesday and We are hoping and praying that it will work and send this evil disease into remission so that My Mother can have some quality of life . She is only 60years old.
I hope that everyone who reads this is fighting this and defying all the statistics.
slan go foill
Eddie