Ariel trial

[Julie40]

Hello ladies. I'm due to start this trial for a parp inhibitor after my last dose of carbo/caleyx in Feb.

Is there anyone else on this trial ?

[hollyp]

Dear Julie,

I am about to complete my 6th and final caelyx this week. Bloods were too low to have chemo last week.

The consultant has talked about trials. However, I am platinum resistant which I know means I cannot have some drugs. Are you platinum resistant or sensitive. I have a feeling that you once said you too were platinum resistant.

I would really like to know so that I have as much info to be able to discuss things when I have my meeting with the consultant.

I hope the trials go well.

Holly

[Julie40 in reply to hollyp]

Hi Holly. I'm still platinum sensitive. Im not sure what other trials are available. I know there is another Ariel trial available after third line but not sure of the finer details. I'm sure it would be on the Target Ovarian site.

Some people find Caleyx easy to manage I've found it tough enough. Im exhausted. Good luck for your last treatment xo

[mummybear59]

Hi Julie. My cousin (Jan50) is due to start this trial in a week or so. She's at the Christie too (where I'm presuming you'll be on the trial?) so you may meet up. She has just finished carbo /caelyx too. Hopefully she'll see this and reply.

Love M.B xxx

[Julie40 in reply to mummybear59]

Thank you for replying. I'm not sure how to find individuals on here but I will try to send her a message. I will be going through Christies. I have completed all the paperwork.

I wanted to try and do something with kids over Easter holidays so taking a break after my end of Feb chemo and ready to get started at end of March.

It's never ending ! I got myself all worked up last week with the reality it's treatment of some sorts forever. If this works it will certainly be a welcome break from chemo Hope you're keeping well xo

[TrishLey]

I think Annie who is a huge contributor to this site is in this trail. Sadly we don't give it here in Ireland yet! Wishing you all the best with the treatments.

Xx

Trish

[Julie40 in reply to TrishLey]

Thank you Trish. I've messaged Annie about it. Hopefully it won't be too long before you get access xo

[giovannabett]

Please excuse my ignorance but is the trial based on platinum sensitivity. I have provisionally been offered this trial after I have three 3rd line chemo of carboplatin and Caelx. Gio

[Julie40 in reply to giovannabett]

Hi. Yes you have to be platinum sensitive. This is a double blind trial but there is also a trial for parp inhibitors for ladies that have had third line chemo x

[gina]

Dear Julie

I wish you all the best for this trial.

Georgie x

[Julie40 in reply to gina]

Thank you Georgie xo

[Hidden]

Wishing you all the best Julie xx

[Julie40 in reply to Hidden]

Thank you. Hope everything has been going well for you xo

[Hidden in reply to Julie40]

I'm waiting on results of ct scan to see if Caelyx is working, go to see oncologist on Friday to see what my next step is!! Xx

[Julie40 in reply to Hidden]

Hope all went well with the chemo and a clear scan lets you get a break from treatment. I've read caleyx can still reduce markers after its finished.

I've deferred my end of treatment scan from mid to end of March as I want a break and also to tie in with the trial. My markers are normal so hopefully all ok xo

[Hidden in reply to Julie40]

Still have 7 Caelyx treatments to go if e erythema is ok with scan so fingers crossed Caelyx is doing its job!!

Yes I can understand that Julie, let me know how it all goes will be thinking of you xx

[Julie40 in reply to Hidden]

Thank you and keep me posted please xo

[Catseyes02]

Hi Julie

I'm on this trial I started last year the end of April .

Which trial are you going on ? I know they are opening a new trial that all patient will be going on the real drug . Do you have the BRACA gene ? Sorry for the questions . If you have anything you would like to know about the trial please let me know ..

Take care

Karen

[Julie40 in reply to Catseyes02]

Hi Karen. Thanks for replying. I'm starting the double blind trial. The other trial that guarantees the drug is for ladies who've had third line chemo.

I'm BRCA 1. How have you found it ? Do you know if you've been getting the drug or placebo ? I was thinking you would know from the side affects. Maybe I'm being daft but hoping that's the case.

Sorry to be nosey but what stage were you diagnosed and how have you been coping on the trial ? Xo

[Catseyes02 in reply to Julie40]

I started 3 weeks after chemo so I couldn't really tell if I was on it or not as I was still feeling sick from chemo .now it ok don't really get side effects ... I had a really bad time of it this time round from the side effects from chemo .. This was my second lot . My first lot was in 2010 . The cancer came back the end of 2014 .. I was stage 2c and I have the BRACA 1 as well .

So I don't know if I'm on the real drug . This trial is for who has the BRACA the double blind .trial . If the cancer comes back you find out what you are on and if you are not on it you are put on the trial drug .

The next stage of the trial is that all new ladies will be on the drug . Then after that they will move on to people that don't have the BRACA .

I ask a lot of questions . The prof I'm under its his baby this double blind trial . He love talking about it .

Im coping ok with it all . When you start the trial I know it's hard but Don't think about it if you are or not on the drug . Think if you were not doing the trial you wouldn't be on anything .if you were to get the dummy drug ..

What stage were you when you found out you had cancer ? And how is it all going ?

I hope all goes well with the trial and you don't have many side effects .

Karen

[Julie40 in reply to Catseyes02]

Thank you for your advice Karen. Worrying about whether I was getting the drug did kick in last week but had a good chat with Prof and he said the same that at least there was 2/3 chance I was and I would be closely monitored. It really boils down to nothing to lose.

I was stage 4 at diagnosis Mar 14 this is my first recurrence. I was to have my mastectomy in Jul 15 and found out week before that cancer back. That was a blessing as I can't imagine trying to recover from that surgery whilst on chemo ! Chemo has been much tougher for me this time too. I really hope and pray that I get a break from more chemo.

Thank you for coming back to me. Good luck on the trial too. I hope it is great for us both xo

[Catseyes02 in reply to Julie40]

Hi Julie

I wish you all the best with the rest of your chemo you have not got long to go now so keep positive . I have everything crossed that you get the real drug and does what they hope it will ..

If I'm on the real drug all i got was a bit more nausea for the first couple of months and my anti sickness tabs did the trick ..

You take care . If you feel up to it keep me posted on how you are getting on ...

Karen

[Julie40 in reply to Catseyes02]

Thank you Karen xo

[jan50]

Hi Julie,

I finished second line caelyx and carbo in December, and am about to start on the Ariel 3 trial next week, and am keeping everything crossed that I get some (mild! ) side effects so that I know I am on the drug!!! This trial requires attendance at clinic every couple of weeks initially so hopefully I will see you there, it would be good to meet. The other "trial" you refer to, if its what I'm thinking is not actually a trial- NICE have just agreed that Olaparib , another parp which has been shown to be effective, can be prescribed for women with BRCA gene after third line chemo- This is good, but I for one am disappointed that it cant be given earlier, and we have to take a chance at getting a parp on the Ariel trial, or pay a crazy amount of money to buy it privately! My onc advises me there aren't any other parp trials at present so I, like you, will have to take my chances with the trial! It woud be good to keep in touch and swap notes, I hope you have a lovely break with your family,

Jan x

[Julie40 in reply to jan50]

Hi Jan you seem to be about 8 weeks ahead of me. My last chemo is end of Feb. I'm sure we will cross paths as I have a schedule of appointments that are pretty hectic for March and April. It would be good to keep in touch.

You're right about the Parp being NICE. I do actually remember him telling me that. I priced it too and it's frightening ! It would not be financially viable for too long and imagine how stressful that would be not being able to afford it.

Hopefully this gives us both a break until the next big thing is free to everyone.

Good luck for the trial and please do keep in touch xo