Caelyx not worked

[Teresa_K]

Found out on Friday that my two rounds of Caelyx have not worked. My CA125 is now a little over 23,000. So glad I pushed for a review before I had the 3rd infusion.

Have had carbo/taxol and then weekly taxol over last 2 years with regrowth happening quickly or in case of taxol before the cycle had finished.

Had to ask for Caelyx and was offered letrozole as kinder option in November. I chose chemo in hope it might work and then could revert to hormone if not. Imagine my surprise when I was only offered best palliative care. I asked for letrozole and (I paraphrase) was told well you could do it is well tolerated. You might as well take it as not. We will try and keep you out of hospital for as long as possible.

Came out of that meeting very depressed haven been given no hope. My husband was furious at the delivery and lack of options.

He starts his second round of chemo on Wed for stage 4 prostate cancer. Gulp.

I have already been to RM for second opinion last year and was told no trial suitable, in fact they were more depressing than local onc.

It is all so depressing

Tx

[Lyndy]

Sending big hugs T..... I can’t offer advice but you are right about it being a hard journey xx

[Teresa_K in reply to Lyndy]

Thank you for the hugs

Txx

[Kryssy]

Hi Teresa. I'm so sorry to read your post. I can only send big love and hugs to you at a very upsetting and stressful time. Your hubby too!!! Life absolutely sucks sometimes. xxxxx

[ssjmichael]

I'm sorry to hear this. I heave heard some on hear say that it does take at least 3 rounds of Caelyx before you start to see changes, and the numbers may go up before then, but I'm not sure.

There are other drugs, and combinations available, so I really hope you can find something that does work for you.

[Teresa_K in reply to ssjmichael]

I had heard the same but my numbers went from 8,800 to 14,500 and then to 23,350. So not a small rise and sufficiently high enough each time to indicate it wad good working. Sadly I wasn’t offered any other options, aside from palliative care. I had to ask for hormone treatment, but currently no back up plan or formal follow up.

Txx

[Teresa_K in reply to Teresa_K]

Sorry that should have said sufficient to show it wasn’t working

Txx

[lorraine71-Australia]

Hi Teresa, I'm sorry to hear Caelyx has not help that is the problem with this beast finding the right treatment, I feel they have not given you many options there are other treatments out there being single or combs.

If it take a 3rd opinion I would go for it don't take this laying down, I do hope a treatment can be available...my best wishes to you and hubby.. tare care Lorraine xx

[thehusband]

As has been mentioned before Caelyx is known as a chemo that takes a few infusions before working. In the case of my wife it was stopped after CA125 readings had risen after two lots, which was taken on the day of the 3rd lot. Many weeks later we found out that the CA125 had fallen nearly 25%, after the third infusion, and way below the starting point, but our Onc didn't tell us. We only found out ten weeks later after it had been stopped. I am 100% convinced that had they told us at the time of the big drop, we would have continued to have Caelyx.

Of course as with everything there is no guarantees, but given another chance I would in the blink of an eye have continued with Caelyx.....in your shoes that is what I would do if only for one more.

I wish you the best of luck.

[Teresa_K in reply to thehusband]

Oh dear sorry to hear that. How much had they gone up by? We all expected the increase to have slowed down but there was no change at all and rise still exponential. Slow rise we would have carried on for sure.

What treatment is your wife on now!

Very good luck for your future treatment.

Txx

[thehusband in reply to Teresa_K]

Hi, they had risen a couple of thousand when checked on the day of the third infusion...... then after the third lot, but without any CA125 reading from the 3rd one, they stopped it on the basis of the rise mentioned. Then they were going to put her on a trial but bloods were not ok, well just the sodium really. So they said to start letrozole without knowing or checking if she was ER positive, the day we started letrozole, which was 4 or so weeks after the third Caelyx, they did a CA125 test and it had dropped a few thousand, and was well below the level we had started Caelyx, but our Onc didn't tell us.....we found out six weeks later by chance, which was then ten or so weeks since the third one.

The Onc refused to give any treatment still, we found a professor who said he would treat, our Onc wouldn't refer us..... My wife went into a major depression, unsurprisingly, and the upshot was she died a couple of months later without ever having more treatment. This was 54 months ago, I still poke my nose onto this site and feel compelled to mention Caelyx if it crops up about not working.

As I said, and of course you know, there are no guarantees, but one more infusion 'just in case' would maybe give you a better feel about its true results....

Nothing ventured etc...

[Stephgrey in reply to thehusband]

I’m sorry to butt in my sister has had one caelyx and feels awful. Her bloods are coming back as low sodium but we are not sure what that means. If her sodium is low will she not get anymore treatment?

[thehusband in reply to Stephgrey]

No sorry I don't mean that. My wife was testing for a trial, and every blood test result had to be perfect. Because her sodium was low, she couldn't have the trial. But her sodium had always been low and that never stopped regular treatment. Good luck.