Rotterdam

[2mini2]

Hi Ladies

So after 6 doses of weekly taxol my CA-125 is in the 7000s and clearly doing nothing !

Today the Rotterdam regimen has been mentioned - I just wondered what your experiences are of this regimen ?

X

[Lindaura]

I am so sorry that you are having these problems with treatment.

I have no experience with the Rotterdam Protocol, but found these in the net:

healthunlocked.com/ovacome/...

healthunlocked.com/ovacome/...

Hope this helps,

But try everything including COC, the Care Oncology Centre.

Best wishes,

Laura

[Lily-Anne]

Over the years there have been lots of members who have dabbled with the Rotterdam however I do believe it’s very tough. If you use the search facility on here it turns up quite a few. There was a woman Sandra whose husband used to post all the time about five years ago who tried. They provided lots of info

LA xx

[Hidden]

I'm on it at the moment.

Also after weekly Taxol. In my case the latter seemed to do a good job with "old" cancer, but nothing for new stuff which first appeared in June.

We're all different and react differently to different chemos. This isn't the worst I've had. And mentally I feel more like myself than I sometimes have.

The most troublesome side effects I'm having are low hGb and thus low energy, even with blood transfusions ( but this has been a problem on several regimes) and the runs, pretty much constantly. I'm managing this better than at the start, but it still makes me reluctant to leave the house. But it gives me an opportunity to catch up on all those things I haven't done when I've been out and about! I can't comment on whether this improves or not when you're just on the pills.

I'm on cycle 2 and my hair is thinning but not yet very dramatically. It's a nearly 20 years old combo. If they're still using it, it's because it works - for some of us at least.

Good luck

[harpist_UK in reply to Hidden]

Hope it works for you Mac. I felt better when just on the pills - was very sleepy on the Cisplatin.

[harpist_UK]

I did the Rotterdam during July and August and found it not as bad as I expected - the name is quite scary, isn't it? I had no delays, but needed a blood transfusion after the first 3 and the final cisplatin infusions, as it affects your haemoglobin. I didn't feel sick (was well covered with Emend and Ondansetron) but after the 3 days of steroids I was very tired and couldn't do much for 3 days - and then it was time for the next dose! The regime took about a third off the size of my tumours and knocked my CA125 from 17000 to 2500-ish. That was regarded as a 'good partial response'. You continue on Etoposide tablets after completing the cisplatin - these were not strong enough to hold down all the tumours, so I was taken off it at the end of October and am now on a break pending some further treatment to be approved. My hair thinned but didn't come out (they tell me if it had come out it would have been a sign of the Etoposide working well). I'd say I was only really wiped out for July and August. I've had four good months of payback time. Definitely worth a try! Good luck.

[Hidden in reply to harpist_UK]

Thanks for this encouragement . I had transfusion before I started, after cycle 1 and I'm sure I'll need another after cycle 2!

Enjoy your visit tomorrow - we await photos!

[harpist_UK in reply to Hidden]

Had a lovely time together! Photo up now!

[2mini2]

Thank you everyone. So I shouldn’t expect total hair loss then ?

But maybe a very low key Christmas!

[harpist_UK in reply to 2mini2]

Mine began to thin during the treatment - it's the Etoposide that does this, not the Cisplatin. I got quite thin on top eventually, but didn't lose my hair. The doctor said however that losing it totally is GOOD, because that means that the Etoposide is working for you. It was therefore the Cisplatin that did most of the work for me.