Rotterdam regime and clinical trials

My mum has just been taken of weekly taxol because after having 7 lots the doctors have decided it's not working for her, as they have seen some deterioration in her disease from her latest scan (despite ca125 dropping significantly and consistently).

They want to start her on the Rotterdam regime within a week or two and we've struggled to find much new information about it online. Does anybody have any positive stories to tell about their time on Rotterdam i.e. are the side effects as debilitating as they say, did the treatment have a positive outcome?

I'd also be interested to know if anybody has been successfully placed on a clinical trial despite having a bowel obstruction or restriction? We are extremely disappointed that mum has previously been told she's eligible for a trial drug which effectively stops the progression of the disease for up to a year, but they are now saying because she has some restriction to her intestine, as the disease has started to grow around it, she will no longer be allowed to access this drug. This seems highly unfair to be told yes there is a drug that we know scientifically will help you, but the rules mean we're not allowed to give it you.

Any info you can give on the above topics would be highly appreciated.

[5gems]

Hi. I was to be put on the Rotterdam regime but instead I went on to Letrezole a hormone drug. I had a fairly good response to that as it allowed me to be of chemo for 22 months. It made things grow less and at the beginning I had a little time when the diease was actually stable. The Rotterdam as far as I know has been good for some but not so for some others. Sorry I cant give you much more information but hopefully someone who has been on it will give you better information. I have just started Carboplatin for my 1st reocurrence which is given weekly for 18 weeks.

I also had been given the opportunity to be assessed for 2 different clinical trial but found to not be suitable for either due to various reason. The last one was an immunology trial which I really would have liked to do though it involved quite a bit of travelling. The reason I was given was I had been on the Letrezole!!! We can't seem to win but I understand the criteria has to be strict so the best research results can be obtained. Good luck to your mum and I hope she finds a treatment that will be more gentle on her but do the job. She is lucky to have you as a daughter. I will be thinks no of you. X

[Hidden in reply to 5gems]

Thank you for that. They have mentioned the possibility of hormone therapy and your results are extremely reassuring. We are determined not to give up and if the rules won't allow us to access the clinical trial here we'll see if we can get it abroad. It's frustrating because similarly to you it seems mum is no longer eligible because of a choice made be her onc team. They wanted to try her on another standard treatment first, which didn't work meaning the cancer has spread to her intestine, and it is because of this spread that they're saying she now can't have it because of a risk of bowel blockage. Good luck with your treatment.

[5gems in reply to 5gems]

Thankyou . I hope your mum does well on whatever she decides to do. X

[trix70]

Hi, I don't know much about the regime, other than I think it's quite harsh and it is not done in many hospitals. What hospital are you under ?

But when I went for a second opinion it was recommended for me as being better for me than the drug I'm on now.

I have a print out from the web where they did a small survey in 2002 with weekly cisplatin and daily oral Etoposide and had very good results.

Best wishes

[Hidden in reply to trix70]

We're at the Christie, so can't get much better than that really. Apparently the response rates there are up to 40%, which is much better than at other centres which is reassuring. Thanks for the info.

[trix70]

Thanks I thought it might be them, I think they are the only ones that do it. Problem I have is that I am in Weston super Mare just outside of Bristol. I would have to move up for 6 months to complete the treatment.

[Hidden in reply to trix70]

Worth keeping it as an option in your back pocket I guess. It is a big commitment but there's no price you can put on your life. We'd go to the ends of the earth to get more time with mum. The Christie is an amazing place with so much support and personal care provided.

[trix70]

Thanks, i have just reread your post, what on earth is the trial for a drug that keeps things at bay for a year? This should be available for all, never mind the trial.

At least they are more on the ball then here, left me going on Taxol for 18 when it had stopped working at about 13, damaged my feet, the left me for 3 months watch and wait when things were still growing.

Keep us updated on how your Mum is.

[Hidden in reply to trix70]

Thanks Trix, will do. Mum couldn't have coped with the full 18 weeks, she's an extremely strong woman, but literally couldn't get out of bed on the taxol. Such a shame they didn't pick your progression up sooner, just shoes how on the ball as a patient you need to be!

The trial she's been tested for basically tests to see if your cancer is driven by a genetic mutation. If you're 'lucky' enough you might have one of about 5 mutations they have a drug to treat and mum was found to have a mutation called K-ras. All seemed so amazingly positive, but we will have we'll and truly have had the rug ripped from under our feet if they now say she can't have it because of the rules.

[trix70 in reply to Hidden]

Thanks for the info, I think I may have a mutation, i was tested for Brca1 and 2 in 2013 and was told I did not have it. But only within the last month I have found out that I am Brca 1 and 2 wild type. I may contact the Christies and ask but I am so far away.