Going for second opinion at Royal Marsden - My Ovacome

My Ovacome

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Going for second opinion at Royal Marsden

phia profile image
phia
13 Replies

Hello all

I've decided to go for a consultation at the R M Hospital, because I just don't feel that my second line treatment (Carboplatin/paclitaxel) which is exactly the same as my first line treatment ( which gave me remission of only 2 months) should be my only option. Does anyone else have dealings with the Royal Marsden? Anything I should think about before going?

Many thanks, Phia xx

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phia profile image
phia
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13 Replies
Leeds2015 profile image
Leeds2015

Hi Phia

Sounds as if you are in a similar position to me. Have you heard of the Leeds Caris 01 trial? This involves sending tumours samples off to America and the bio markers are analysed to see which chemo might be the most effective.  I am waiting on these results, I too have been offered the same carbo/taxol despite being classed as platinum resistant as there has been a good response to the same regime but dose dense. I would get 2/3 of the 3 weekly dose on a weekly basis. I have been told that this has a 40-50% success rate and has the highest success rate of the options available.  Not sure if this is similar to what you have been told?  I would consider the Leeds trial if you can get on it. X

Aroha profile image
Aroha

Hi I went to the Royal Marsden for a second opinion and am so glad I did. I have had such a wonderful service and they are very keen to discuss your treatments with you.  I am under Susan Banergee ( not sure about the spelling!) And she's great.   Good luck xx

HI phia, for what its worth, a second opinion is the way to go,  Every one speaks so highly of this hospital so you are doing the correct thing.  Its your body  and you have to do what is best for you, wishing you well

keeponkeepingon profile image
keeponkeepingon

I had surgery and chemo at the Royal Marsden,I love this  hospital,staff are so kind and caring,i'am sure I would'nt be here if it were'nt for the R M.Good luck I hope they are able to help you. x

Lily-Anne profile image
Lily-Anne

RM is my choice for referral too. I was reading the EU trails list for OC there are thousands of them! Fascinating reading of the ones that have closed, kept me quiet for ages lol

LA xx

Whippit profile image
Whippit

Dear Phia

I've been a patient at the Royal Marsden at their Chelsea branch for over 3 years and can't praise them enough. I found them really well-organised, and the oncologists spent as much time with me as I needed to talk about treatment options. They may well have a trial for platinum resistance so I would say it's worth seeing them for a second opinion. 

I hope it all goes well. I was also under Suzie Banerjee but sometimes saw Martin Gore. Let us know how you get on. xxxx Annie

MsLizD profile image
MsLizD

Royal Marsden is a super hospital, feel so lucky to be with them. Prof Gore and Dr  Banerjee are the ones dealing with me.

One thing to consider are the travel arrangements, time and cost if you don't live nearby.  I drive from the Midlands to a tube station on the outskirts of London then take a tube on the Piccadilly Line to  South Kensington, it's only a short walk from there.

Good luck and best wishes x

giovannabett profile image
giovannabett

I am another who has followed exactly the same route.  At the time of my referral Susana Bannergee was on maternity leave so I had a Dr Ogines, I had a Registrar called Dr Ong (Chinese) who spent one hour with me.  I was on my own as my friend couldn't get from Norwich to be with me for the early appointment.  If I show symptoms of a further relapse they will put me forward for a Platinum-based Phase 3 trial.  so far I am keeping well without treatment through monitoring diet and making my body work in a balanced way.  Whatever I am doing seems to be working for me!  My oncologist may well want to do a trial to see if self help can be trialled!  gio

trix70 profile image
trix70

Hi Phia,

All good advice, the trial Leeds 2015 mentions, I asked my oncologist if If could do it and after she had checked said it was only for that region which was disappointing.

I am also platinum resistant now, third line carbo/Caylex did not work after two years, weekly Taxol, like Leeds2015 says, dose dense has partially worked.

I might end up at the RM also depending on how I long I remain stable.

Best of luck. 

gina profile image
gina

The Marsden is a truly wonderful Hospital.I go to Sutton. People travel from all over the world to go there. They have been looking after me for 6 years .At the moment I am on one of their trials.

XxxxGeorgiet

phia profile image
phia

Thank you all so much for your replies, so brilliant and helpful. I've got a referral from my GP, and am e mailing all my information over to the RHM on Monday and booking a private consultation at the same time, as this seems to be the quickest way of moving things on. Is this what everyone else did? I'm then hoping to move over to the NHS system within the RM.  Again - is this what you all did, or did you have to continue with the private route?  With my remission being so short, and now having a chest infection, I'm feeling that things are becoming quite urgent.

Thank you all so much, Phia xx

Honey3 profile image
Honey3

I can't recommend the RM highly enough. They were fantastic with DD and are still doing a brilliant follow up care. She was under Prof Shepherd and Ms Nobbenhuis and still sees Ms N or one of the team when she goes for a routine follow up every six months. Everyone is very kind and caring. xxx

thomas62 profile image
thomas62

Hi phia and everybody

I transferred to The Christie in Manchester and have been really happy with the care and treatment there.

Gwen

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