Royal Marsden MILO Study for low grade ovarian Ca

[Veronique]

Hello Everyone, I haven't posted for quite a while as I've been very lucky to be in remission for nearly one year, four years after onset. About to have a further CT as my tumour markers are always low regardless.

My oncologist wants to refer me to the Marsden for the above study and I wondered if anyone else has and if so, whether they have started the trial.

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That is good news hope the scan goes well for you and that your remission stays long

[doodoolatrice]

Morning I'm interested in this study as I'm low grade. Best of luck with your CT scan x

[thomas62]

Hi Veronique,

I am also Low grade serous under The Christie. They have talked about me going on a MEK inhibitor trial. Is this the same as the MILO Study? Currently I am on Letrozole.

Gwen

[dianeb]

Hi,

I am also. Low grade serous and currently on avastin at UCLH. just be interested to hear how you all get on with your drugs/trial. My oncologist also talks about Mek inhibitors but just now the avastin seems to be working.

D

[TinaB1]

I have low grade which is advanced progressive. I'm not offered scans and I'm told they're leaving well alone.

I can understand why I'm not on chemo. I'm told it's unlikely to work but will be used as a last resort.

What I can't understand is why others in my situation are on treatments such as hormones, Avastin and inhibitors.

I did ask whether I could go on hormones and I was told that they are for uterine cancer.

When I was in serious pain, I was referred to the Hospice. Last Wednesday, I had an appointment with the oncologist who explained that I'd start treatment when I got symptoms like pain, yet when I had it, I didn't start treatment.

I wonder whether it's common practice to lie to a patient.

I wonder if anyone else is in my situation. Xx

[Veronique in reply to TinaB1]

Hello Tina, Sorry to hear of your worries. You are not alone. Where are your currently being treated? My onc. said Avastin is only used when patients have had first line treatment and wouldn't give it to me (I've had 4 lots of chemo).

I don't know about the other drugs you mention. Hope you manage to get some answers.

[thomas62]

Hi TinaB1,

Further to my previous post. My hospital tested my cells, finding them strongly oestrogen positive which is why they then put me on Letrozole. My previous hospital didn't test my cells from what I know. I am stage 3b. I would ask for their reasoning as to why no aromatase inhibitor and also I think I would ask for a second opinion from a major cancer centre.

Gwen

[Veronique]

Thanks to all who replied to my post on the MILO study. I'm afraid I don't know about the MEK inhibitor trial. Would be interested to know about it if anyone does.

Seems I am the only one to be referred for the MILO study so far. Will keep you posted.