Treatment for advanced,recurring CaOv/Royal Marsden drug trial (MILO)

[Veronique]

Hello, I haven't posted for a while having been lucky enough to have "time off" after 2 CT scans, four months apart, showed some shrinkage of 2 of the 3 tumours.  I was diagnosed with Ca Ov nearly 5 years ago and have had 3 ops and 4 lots of chemo.

 My oncologist was refusing to give me more CT scans despite me proving my CA125 gives false, low readings.  Luckily a bowel surgeon (had to have a bowel resection 2 years ago caused by one of the 2 cancer ops I've had) supported my request and oncologist finally gave in.  That was this March and sure enough one of the existing tumours has grown and I now have a new site in the lower mesenteric/upper presacral region (Iv'e failed to find its location).

Oncologist would prefer me to go to another consultant/hospital and has been trying to push me for a drugs trial at the Royal Marsden (MILO study) and although I'd love to be transferred there, this drugs trial is neither suitable chemically or logistically.  

Currently having another battle with her to repeat the Carbo/Caelyx regime I had October 2014 which gave me the only time off in nearly 5 years.

Has anyone else been referred for this MILO study and is anyone else being treated from S Hampshire at the Royal Marsden?

Thanks

[Hidden]

Hi Veronique I am sorry to hear you are in trouble at the moment,  It must be upsetting for you.  Unfortunately I know very little about the Royal Marsden but if you read down through the threads there is one lady on site who is familiar with that hospital, perhaps you could message her.. Also it might be an idea to ring the Ovacome Nurse as she may be of more assistance

[Veronique in reply to Hidden]

Thanks. I found out there is a helpline to Cancer Research too.

[Orsolini]

Hello - I am very interested in your post. I started out at the Marsden before moving to France. If there is any chance of a referrral to the Marsden I would go there running (as quickly as possible!). It is a fantastic place, very positive, and they have so much knowledge on Ovarian cancer.

Here in France I was referred for the MILO trial, then got a 2nd opinion and ended up with a 4th operation. I was just told the MILO trial is now closed (perhaps just in France??). But I think it definitely sounds interesting - worth discussing at any rate. It must mean you are low-grade, my understanding is that low-grade responds less well to chemo.

Good luck,

Nicola

 

[Veronique in reply to Orsolini]

Thanks for replying.  Yes |I would too but not for the delay that being referred for this trial would take.  Like most of us I am dreading that the C might be spreading quickly (2 yrs ago whilst in hospital, I was given a CT scan 2 months after 2nd op to remove 2nd site and was clear but 2 months later had to be operated on fur blocked bowel and the surgeon found new site of cancer).  I have told my current onc. I would be happy to be transferred to RM after another round of Carbo/Caelyx.

I understood (am I wrong?) that treatment in France is very good.  Friends of mine who live there urge me to go there.

[Orsolini in reply to Veronique]

Hi there - interesting, are the delays for the trial so long? Is that to check eligibility I wonder? If you can go to the Marsden anyway for a 2nd opinion I would do so. Low grade is rarer than high grade, but the Marsden have a lot of cases.

Treatment in France is for me as good as/the same as I had at the Marsden. I went back to the Marsden as a private patient last year to get their opinion and will continue to do so. I suppose the main difference is that I do get to see the same consultant each time (never any registrars). Also I was offered a 4th op which may not have been available in the UK.

Nicola

[Veronique in reply to Orsolini]

Hello Nicola, thanks for your reply.I too was thinking of paying for a private consult with RM.  Roughly how much does it cost and do you know if any treatment they recommend could be done on the NHS?

V

[Orsolini in reply to Veronique]

Hi Veronique - yes, I paid £300 for a consultation with Dr Banerjee last year. But I am overseas, might be less for you as you are in the UK. But I'm sure you can go on the NHS. I would get on the list, I have discovered that having a 2nd opinion can be really helpful. Yes I'm sure all the treatments are available on the NHS. Nicola

[thomas62 in reply to Orsolini]

Hi Orsolini

I read that you currently live in France.  I am low grade 3b. serous living in Manchester.   We have a house in France and have been considering a move to France.   Can  you advise on general availability of treatments in France compared to England, especially with restrictions put on us via NICE.

Look forward to hearing from you.

Gwen

[Orsolini in reply to thomas62]

Hi Gwen - I think there are more treatments here than in the UK. The main things are a need to speak a very good level of French and to be in the French medical system with a Carte Vitale and a mutuelle to pay the rest. But I am very happy with my treatment and my doctors, and it is easy to get a 2nd opinion. The whole system is totally different to the UK with much more freedom to chose where you go/which doctors you see - Nicola

[Juejue]

Hi yes just been referred to royal marsden and had 1st appointment to discuss trials and am from portsmouth if that helps , was sent to Sutton branch but think Chelsea will be easier to access on the train. They were very friendly and hopefully some good trials coming up in next few months . Best wishes . Jue x

[Veronique]

Thanks for replying.  Have you been referred to the MILO trial?  I've persuaded my Malaysian oncologist (ring any bells?) to repeat my Carbo/Caelyx first as I'm anxious to start and cannot see how I could travel to Sutton every week for at least 6 mo. especially if I develop symptoms.  Were you with QA?  Would really like to know more about your referral etc as we must have been under same Onc/hospital.

V

[Veronique in reply to Veronique]

Thanks Nicola, as you can see above, I wrote 2 detailed emails to my Onc and she has finally agreed to let me repeat Carbo/Caelyx. After that I will ask to be transferred to RM.  I hope Juejue will keep us informed of her trial there.

V

[ScardyCat40]

The MILO study is for low grade ovarian cancer is this what you were diagnosed with? I tried to get on this tial a couple of years ago but I wasn't considered suitable because my sites were too small and when the study team examined some of my tissue from my hysterectomy they said I didn't meet the profile for low grade???

There is a newer trial for low grade oc its called the Logs trial they need to take a fresh biopsy for this trial which I don't think will be good for me as most of my sites have been pretty inaccessible.

The non trial treatments offered as part of the trial are weekly taxol, caelyx and topecan. Maybe if you don't get on the trial you can give one of those a go?

[Veronique]

Thanks for your reply ScardyCat. I think I will ask for a 2nd opinion from the RM when I've finished the next round of Carbo/Caelyx.

[Juejue]

Hi Veronique , yes think we're under same consultant , unfortunately although I went to royal Marsden they could only offer me octopus trial but I am on carbo /taxol and I have progressed and now platinum resistant and suffering with acities, so consultant thinks gemzar and drug trial they have at qa offers me a better option , so not going to marsden at the mo . I would say marsden has some good targeted trials coming up later in the year maybe a option later on for both of us? good luck with your treatment . Jue x