to trial or not to trial?

[rose58]

my dear mum was diagonised with oc last year and after a hysterectomy and no further treatment made a good recovery until now where she has been diagnosed with meoc. she has been offered a place on the meoc trial but is unsure what to do for the best? we have been given lots of information but think for all of us this information is overwhelming at this time. would be interested to hear from anyone facing similar situations.

[Hidden]

Hi Rose sorry to hear about Mums Diagnosis. Im not sure what meoc means i presume the last bit is overian cancer.I havent faced this situation and im currently receiving chemo for my oc and peritoneal cancer.I too had a total hysrectomy. I think if you find out as much info on it as you can and see what the other results have been in other women. What does the onc say? Im sorry im not of much help but i will say prayers for Mum Love Lynn XXXX

[rose58 in reply to Hidden]

hi lynn, thank you so much for your reply and for your prayers. i hope you are doing well with your treatment. meoc stands for 'mucinous ovarian cancer' its a rare type of oc, they say it differs significantly and has similarities to cancers found in gastro, such as bowel and colon etc.. they are currently trailing to see whether drugs used for such cancers would be more effective in cases like mums as oppose to the standard chemo given for oc. feels like a bit of a gamble, but then i think there must be a reason why they are trialing such drugs maybe the standard chemo doesnt hold much hope mum?? i dont know? finding it hard to find others in the same situation.

take care keep strong xxxx

[Heffmeister]

I'm on the mEOC trail. I've just done my third chemo dose and waiting for a scan next week to see what effect the chemo is having. I'm on the oxaplatin and capecitabine arm which was the side I was hoping for. The standard treatment does not seem to have a good response rate in mucinous disease for many people I believe. Ask if you want more info. I can tell you more next week.

My ca 125 was over 100 before treatment (doesn't tend to be a great marker for mucinous) but when down to 22 after one cycle. That's all the results I know so far. Martin Gore at the Royal Marsden is the lead investigator he is very helpful to answer any questions.

[rose58 in reply to Heffmeister]

hi there, thank u so much for your reply and for sharing your story with us it gives great comfort to mum and i to hear from people sharing similar experiences.i have actually sent u a message through here also !! it seems the more research and reading i do the more i feel it may be of benefit to mum to accept the place on the trial.

her ca125 was around 500 on her last blood test. she is having tests on her kidneys at the ucl on monday which we assume is to do with chemo she may be having, and she has an appointment on 22nd of this month where she will need to give a decision.

we would really love to keep in touch with u and we pray for good scan results for you next week.

all the best, take care xxxx

[suzieque in reply to Heffmeister]

Hi,I would like to ask Heffmeister a question regarding your comment that standard treatment does not have a good response rate in mucinous ovarian disease,so you believe.My question is what proof have you got to back this up. .Do you realise that a lot of women,myself included might have been diagnosed with this rare mucinous type.and are now thinking that their treatment might have been a waste of time..I was offered the choice of trial and decided it was not for me..Each to their own I say. . . .

I hope, Rose 58, that whatever your mum decides to do that she has the right guidance and support from the experts .

Best wishes to all O.C buddies xxx

[Hetty in reply to Heffmeister]

Hi Heffmeister. I too have MEOC and am wondering how you are after your treatment and scan? I think that I would be unable to join the trial as I have already had one lot of chemo last year which of course was unsuccessful.

Thanks, Hetty

[Heffmeister]

Hi, I had my sixth dose of chemo on Monday. Unfortunately my mid treatment scan did not look remarkably different from my one prior to treatment. Ca 125 and the other tumors markers do not seem to be reliable with me with either!

I'm having my final scan next Thursday so will report back then but my oncologist on advice from the MDT has already referred to a surgical team in Basingstoke to be considered for more surgery. This would be like a full perionteal stripping and hopefully removal of all traces of disease and maybe heated IP chemo.

What chemo did you have last year and what stage are you if you don't mind me asking?

[Hetty]

Hi H. My cancer was Stage 2c and I think my chemo was carboplatin (didn't lose my hair). My oncologist admitted beforehand that there wasn't really a suitable chemo for MEOC but this was the best they had to try. This last week my CA125 was 17 which is 'normal' so obviously for me isn't a good indicator.

Hetty