Has anyone heard of or received the Rotterdam Regime for recurring ovarian cancer?

[lizward]

[BusyLizzie]

Hi Lizward,

I don't know for sure, but I would guess it is this (found only by googling):-

telegraph.co.uk/news/uknews...

also reported at

news.bbc.co.uk/1/hi/health/...

"an intensive regime of two chemotherapy drugs, cisplatin and etoposide"?

If it is this, it is a 10 year old treatment (so the verdict must be in by now) which was researched at the Rotterdam Cancer Institute.

Love Lizzie

X

[lizward]

Thanks Lizzie I have googled it and read the BBC report will read the Telegraph one. I was diagnosed last June had debulking operation then six sessions of carbo/taxol. End of chemo scan showed further tumour which was operated on five weeks ago but surgeon found spots on my abdomen and bowel. Saw oncologist this week who wantsto put me on this regime after he has seen the scan, which will be done in a couple of weeks. I was very positive all through previous treatment but have found it more difficult since finding out the cancer is still present.

[BusyLizzie in reply to lizward]

Hi lizward,

I was diagnosed May last year and had my debaulking in June and started my 6 cycles of carbo/taxol in July. Lowest my CA125 came to was 90 then started climbing. Having finished finished first line at end of October, I became symptomatic and started bloating at the end of December. Multi-site meant no more ops from their point of view. I am now on caeylx which takes ages to kick in (if it is going to). We are now at the point where we are trying to decide whether it is doing something or to abandon it. Last blood test I had a drop of 250 in my CA125 but I am still symptomatic. Another blood test and scan today will mean I have the moment of truth over the next week or so. To be honest, I do not think it is working and now it is a race against time. I am not too down about it, but I can't say I am positive - just that I will keep on fighting, but won't be too surprised if it all ends in tears.

I wish you success. Please let us know how it goes. Have they confirmed it is etoposide you will be having? I seem to recall it is taken in tablet form.

Love Lizzie

X

[Hidden]

Hi Lizzie,

What a source of information you are ( interesting link ) I hope you will find something soon that will work for you ( and for us as we all need you ) a big thank you for being so encouraging you never cease to amaze me xx G xx

Hi lizward

Sorry that you will need to have more chemo, I am surprised that you had a second op....don't we have conflicting views from our oncologist ? .... I had a recurrence my oncologist told me they never operate a second time, which I know is not true by the info I read on here.

my best wishes xx Gwyneth xx

[MargaretJ in reply to Hidden]

They told me that too Gwyn but said my 1st recurrence was a single sit tumour and was operable so I had it removed in 2011. It is back of course, multi site, and I am due, following a failure of 20 weekly doses of taxol, to start Caelyx on April 11th. I think this demonstrates that each case is individual and must be treated as such!

Margaret

[Hidden in reply to MargaretJ]

Dear Margaret,

I think it does depend on where the recurrence actually is, and we are all different... but I have moved on from this position anyway as this post is two years old, it annoys me that HU see it fit to post links to old posts because many people are no longer with us (as you can see by reading this thread).

I try not to revive these threads if I can as I feel it does cause upset because new people don't realise this and are actually replying to the deceased.

Thinking of you Margaret and best wishes on your new regime.

Love x G x

[MargaretJ in reply to Hidden]

Thanks Gwyn! I rarely look at when things are posted just assume that e get recent posts! Careless of me, and insensitive!

[Hidden in reply to Hidden]

When I had a second episode last September Gwyn.. The surgeons at my hospital took an area out. Afterwards, I asked why other nodules which had grown significantly weren't taken out, I was told the surgeons only seek to take out what they absolutely had to as surgery isn't protocol. But then I read other people have all visible disease taken out so it confuses me. Incidentally, have had heart pains lately and tingling down my left arm. I'm having a blood test tomorrow so I'll ask the nurse. Xx

[bosue]

Hi Gwyneth, I have had two major ops 14months apart, then chemo, now waiting for results of scan, I cant understand why your oncologist say they dont operate a 2nd time !! mind you I dont know all your details,what treatment are you having at the moment? Love Sue x p.s I am now going to look up the Rotterdam Regime.

[Hidden in reply to bosue]

Hi Sue

It is good news for me at the moment as I am in remission, I see the oncologist on the 5th April but when I had a recurrence last August I had a tumour on the para-aortic gland, because it was too near major blood vessels and arteries it would have been too dangerous to operate, but my oncologist said they never do 2nd operations anyway how odd is that ?? He also said that it wouldn't go away but he will give me chemo to attempt to shrink it, at Christmas I said "isn't it good news it has shrunk?" to which he replied " NO I have already told you it is not going to go away,don't run ahead of yourself " I then went to see him in January he then said.... "ALL CLEAR " I nearly fell off the chair, after being told by him that my prognosis was a year.....

What a roller coaster.... I've learned to take things one day at a time.

Best Wishes xx Gwyneth xx

[Hidden in reply to Hidden]

So you're busy running away with yourself Gwyn and long may it last. Xx

[bosue]

Lizward, I've just looked up 'The Rotterdam Regime' it it looks great, are you having this treatment?love to find out how you are getting on,it does sound like a wonder drug. good luck. Love Sue x

[lizward]

Hi I think treatment depends on where you and what your oncologist thinks. My second operation was because the tumour was part of the original mass, I had apparently got a lot of disease and was told they couldnt take everything away. The thinking was that the chemo would get rid but of course it didn't though worked everywhere else. I now have cancer spots on my bowel and abdomen likened to barnacles on the under side of a ship!!!!!! Gwyneth how wonderful to be told that you are in the clear, I long to hear those words. Sue I will keep you posted on my latest journey not sure yet when it will begin. Best wishes to you allxxxxxLiz

[lizward]

Lizzie yes they have confirmed it will be Etoposide! I will keep you posted as to how it goes xx

[jurassic in reply to lizward]

Hi Lizward, I am taking Etoposide at the moment have had three lots so far out of six. Mine comes in a tablet form twice a day for ten days eleven days off then start again.I had a scan after the second cycle and some of the tumours were shrinking and CA125 has reduced to 188 from 289.

Downside my hair has gone again but I have a new wig and the normal constipation. My onc also said Etoposide did not affect the immune system as much as other chemos. I have had paclitaxel and carboplatin then two lots of carbo platin but am now platinum res.

Best wishes.

Marilyn

[lizward]

Hi Marilyn thanks for your reply! I am to have cisplatin and Etoposide and yes I guessed my hair would fall out again. I think I may go for a wig this time I just wore head scarves and hats last time. I am pleased your CA125 is falling and hope it continues to do so. Best Wishes Liz.