Hiya I had my mid treatment scan results today (had 3 cycles of taxol carbo) and my tumours havent changed at all. Onc thought this would be the case as my biopsy revealed low grade (yet Im stage 3 with spread to omentum). She said the surgeon is going to see me in 2 weeks time to chat about the surgery as they are still going to go ahead with it.
Also, after my op Im being referred to the Marsden in London to have a different chemo as I am platinum resistant it seems.
Anyone got any stories/info about the Marsden and what possible chemo I might be given? She said I might even go on a trial.
Im feeling positive, I dont have to have chemo tomorrow and I will be having my surgery in Feb, so its all good really. Also maybe Ill keep my eyelashes and eyebrows too because theres going to be a 'chemo break' now.
Kate x
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Now you can focus on the next stage. I don't think it's unusual for low grade tumours to be platinum resistant as they grow much more slowly than the higher greade ones. I very much wanted to get the surgery over with, and felt that I was in recovery from the moment I woke afterwards. I hope the same will apply to you.
Hysterectomy and omentum removal Wendy. I know they wont be able to get all of it but the bulk will be gone thats why Im being referred to the Royal Marsden to look at other options other than taxol carbo. Onc thinks mine might be rare but until they get a big chunk under the microscope they wont know what to give me
Let me know how you get on at the Marsden. I'd be interested to hear if you respond to an alternative therapy. I'm feeling a bit frustrated at the moment but glad of a break from chemo
Are they taking out your ovaries as well Kate? My understanding of low grade cancer is similar to Isodora's. I'm not having any treatment at present as my cancer has stabilised and I think and future treatments will be aimed at managing growth rather than shrinking or eliminating the cancer.
Onc seemed to think there are a few other treatments available, as well as possible trials. Yes they will take the ovaries too, everything, tubes, uterus etc. I too am glad of the chemo break, I only had 3 cycles but its nice to know Im not going in tomorrow and I can now get strong and eat well in prep for my big op. Will see the surgeon in 2 weeks time and the op will prob be the week after that. When Im fit enough to, Ill go to the Marsden.
Glad the way ahead is clear - many best wishes for a successful op and speedy recovery. As you say exercise, eat and rest. Be strong and it will all fly by. After the op, just take it easy and gradually build up your walking and strength.
Hi there, do you know what sort of tumor you have? You sound in a similair situation to me. My mid term scan showed no change but they wanted me to carry on the full 6 cycles. I did my final scan yesterday and get the results Monday. I have 3C disease but low grade mucinous- it started off as borderline.
I got a second opinion at the Royal Marsden. They are very nice down there. I went to see Professor Gore. I ended up going into a drugs trial that he is a lead investigator on, called mEOC, but it only for mucinous OVCA. The chemo I have been having is oxaliplatin and capecitabine (tablet).
It is likely I am facing more surgery- I have been referred to a surgical team in Basingstoke. I've had 3 major surgeries in less than 2 years so not sure how I feel about it.
Good luck at the Royal Marsden and with your surgery x
Claire, I am under the team at Basingstoke, what a coincidence! I have low grade but stage3 as it has spread but onc says its slow growing hence why it hasnt responded, she expected it not to but she said it was worth a try, she told me theres no point carrying on the the 6 cycles as it wont do anything (taxol carbo). PM me if you like, especially as you might be in the area.
I;m being treated at the Marsden...they are wonderfuil......I had my surgery there....full hysterectomy/part of bowel/omentum etc. Had really good care.
In fact had my 4th chemo there on Wednesday. So our paths may cross.
The Marsden is a great place. I am on a trial there. Although I think it is closed now for new recruits but there are lots of different trials happening all the time. I am there on Monday.
Good luck for the surgery. Its a great thing to be 'getting on with it'.
I've been treated at the Marsden since March 2011, and have nothing but the highest praise for them. I've done two rounds of doxorubicin and six rounds of gemcitabine/docetaxel, and everyone, from the consultant to the nursing staff in the day unit, has looked after me brilliantly.
Good luck with your surgery, I'll soon be having an op to remove one particularly stubborn tumour that has decided to snuggle up to my bowel. What comes after that I don't yet know but I trust them to do the right thing for me, whatever that may be. You're definitely in good hands st the Marsden!
I am at exactly the same stage as you... Just awaiting CT results... I still have omentum pain so know it hasn't shrunk... Ca markers going down though. Having surgery in 2 weeks ... Bring it on, want this beast out of my body... Full hysterectomy salping- oomphrectomy and omentum.
Have you have your ct results yet since you posted? How are you feeling about surgery? Im quite scared at the mo yet I need to spin it to a positive and get the bulk of this out of my body-they cant get all of it though thats why Im being referred to London.
Am getting my results on Tuesday... I have to say that I start my conversation with' if the cancer has spread I don't want to know' this will only take me out of being so positive... I was iinitially told by a A&E doctor that i only had a couple of months to live! watching my family grieve was Sooooo awful, husband up hourly at night vomiting with fear!!! I never want to go back to that place.... am VERY positive and will survive, so they need to know what they have to do at surgery, but not me...Surgery to me is positive I do have bowel involvement so need to 2 teams at surgery, but it will be fab to get the ovary out with all the cancer cells they can contain and my omentum (which gives me pain).. then remission hopefully will be long. I have gone vegetarian no dairy am exercising and meditating, so hopefully all will help with survival
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