Trioc trial and recurrence

[caz54]

Hi, I havent posted for a while, I was diagnosed stage 4 OC in 2014, I had 6 treatments of carbo/taxol and debaulking as well as 18 treatments of Avastin. I was told NED in April last year, my CA125 went down to 12 from 4000!

In January this year my CA had started to slowly rise, after a CT scan I was told there was some growth in my lymphs in stomach. I am now on a clinical trial called Trioc.

I had a terrible fall this week, and have been feeling wobbly for a while, I have had 3 falls in as many weeks. The research nurse does not think it is a side effect, my GP checked for stroke, ears etc. He could not find anything wrong, and suggested I went back to my onc and ask for a brain scan.

I had this as an emergency within a couple of days last Friday. I am now going through the waiting period for my results. Am I correct in thinking that OC is rare to travel to the brain?

Is anyone else on this trial?

Caz x

[Yoshbosh]

Hi Caz,

I really wanted to do this trial, but my liver function isn't good enough to get on it 🙁 How long have you been on it?

As for brain mets, yes, from what I have understood, it is quite rare (but not impossible, obviously, as OC is the gift that keeps on giving 😕).

I do hope you feel better soon and are able to get good results from the trial. Of all the trials I have read up on, this was the only one I was particularly interested in.

Vicki x

[caz54 in reply to Yoshbosh]

Hi Vicki,

I will have my 4th jab on Thursday. I was originally told I couldn't receive Trioc as there was a debate about whether I had cancer in my liver on diagnosis. It turns out that it was on the outside so they have now accepted me. My onc is Dr Michael who is absolutely wonderful, she is heading the trial.

I must say on the whole it is much easier than chemo. Fewer side effects, flu like symptoms, tiredness and a sore arm. My jabs are now 3 weekly so there is a longer gap between jabs.

Take care

Caz x

[Yoshbosh in reply to caz54]

That's really good to hear, Caz. I take it you are feeling better now than you did last week?

I still would have liked this trial, but still waiting for a plan for my liver. I also think I'm getting to the point where I wouldn't qualify for it as I'm feeling a bit twingey now 😕

[chrissapam]

yes it is rare...I cant see you can rule out drug effects...believe your own feelings/experiences and convey them to yhe research team. The whole idea of trials is to look at cost/benefit.....you are brave and make sure you know it! Love Chris xx Good luck with scan results... x

[Purple-iris]

Hi Caz

As Yosh posted rare but unfortunately not impossible ,😞 I was sent for a brain scan a few months ago when had headache and problems with my eye whilst on Avastin . Thought they were checking for bleeds or stroke and only found out when went back for results that they were checking for spread of cancer . Thankfully all clear .

Can imagine how difficult the wait is but surely more likely to be the drug . Hopefully once you have all clear from brain scan they will have to re look at your bloods and drug effects . ( can they reduce the dose ? )

I am also stage 4 diagnosed July 2016 CA125 3880 and now 10 . NED and on number 11 of 18 Avastin . Going for 6 months post chemo scan results tomorrow. ( trying to stay calm ! )

Have been told it will come back so trying to make the most of every day . Am so grateful to all you lovely ladies on trials at present as gives us all hope for the future .

You are in my thoughts and prayers and hoping that you get an all clear from the scan and no more falls . Let us know how you get on . Love and best wishes Kim x

[caz54 in reply to Purple-iris]

Hi Kim,

Thank you for your reply, thank fully I was told my brain scan is all clear. Im so happy. My GP has now decided I may have a viral infection and has prescribed Betahistine, which will hopefully stop this awful drunk feeling. I hope all went well at your scan results. And I agree , make the most of every day.

Take care

Caz x

[Purple-iris in reply to caz54]

Fantastic so pleased to hear . Thankfully my scan was all clear so big sigh of relief.

Hope the medication helps . Love and best wishes Kim x

[caz54 in reply to Purple-iris]

Thank you Kim. Im so happy to hear your scan was all clear.

Take care

Caz x

[Bubbles-1]

Hi Caz,

I was on this trial recently. Only made it to week 2 as started bleeding. Was given one dose of radiation to stop the bleed, it has reduced it but I still have a 'show' every day.

First time posting for me, so to give a bit of my history:-diagnosed Jan 2015 3c serous ovca, ca125 over 19,000, Brca1. Had 3 rounds paxitaxel & carboplatin, debulking surgery then 3 more chemos. Ned until this May when ca125 started creeping up. On watch & wait as no symptoms yet, would have liked to stay on trial but radiation put a stop to that.

Wishing you luck on this trial, hopefully your falls are more to do with low blood pressure- I'm sometimes wobbly because of this. It is rare for OC to travel to the brain. Let us know how you get on, will be keeping everything crossed for you. Best wishes to all you lovely ladies on this site.

Michelle xx

[caz54 in reply to Bubbles-1]

Hi Michelle,

Im sorry you were not able to continue on the trial. Fingers crossed for you that your symptoms stay away and you continue to feel well. Thank fully my scan was clear, now being treated for a viral infection.

Im not Brca, I wonder if that has something to do with it?

Take care

Caz x

[Bubbles-1 in reply to caz54]

Hi Caz,

Think it may be due to where it's recurred- quite low down in vaginal area, near bowel & bladder. Also in lymph nodes. Can't be operated on at mo as not enough tissue around it, so hopefully chemo will blast it! Have my appt next week so will prob find out when chemo likely to start. Also meant to say had bilateral mastectomy last year too- love my boobs! Just waiting on a little procedure to get them finished, prob after chemo.

Glad your scan was clear- fab news!!

Best wishes

Michelle x

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Just want to wish you well with the scan results. Hopefully it's nothing to worry about