drug trials

[shen]

hi ladies i recently joined this group. i think u are all a wonderful bunch of girls who give each other inspiration and hope.

i have a braca gene .. so thts not good..

i have heard abt parp inhibitors.... anyone taken them?

as anyone heard of the drug trials olaparib... i know they have used them in the states but would like to know if anyone has tried it or heard abt it...

is anyone on a drug trial....

how do u go about choosing a trial

best wishes to u all

shen x

[iamstillme]

HI Shen

i am not on a trial but as far as i am aware if brca positive then there is targeted therapies for this and it can have a good response , The person that needs to refer you for a clinical trial is your oncologist , They will let you know what is available and refer you to suitable trial . Hope this helps

Love and best wishes

Ally x

[Hidden]

Hi Shen

I am sorry I can't help but I am sure there will be someone that can...If not you can always give the Ovacome helpline a ring and speak to Ruth Payne tel [phone]

love x G x

[shen]

hi, thank u ..... i know i am paranoid, but i am going back at the end of the month for a check up and blood tests... and i am so frightened that my ca125 has started to rise again... i just want to have something sorted in my head to say.... that if it has started to cum back try something different... ive been looking at different trials...... honestly i would take anything if it stopped this b.....y cancer cuming back.... sorry for going on and on. ive been looking and the m6 trial.. i am just a bit wary abt trying a parp just yet because when u have it once u cant have it again.... my head is spinning i just wish i knew what to do....i just dont know what to do... i dont know how i will cope if it is coming back.. i dont think i can do all this again. i read these posts by all the ladies on this site and i admire their courage and their positive attitude.. thank u again and best wishes to u

shen x

[Jacks150]

Hi Shen,

You are not paranoid. We have all been there. This journey is so unpredictable.

Hopefully you will get good results at the end of the month but if not you will get through it. Most of us on here have been fighting this for some time and with the support of this site keep on going.

If your hospital offers support and counselling then please do talk to them or as gwyn suggested talk to ovacome who are really helpful.

It is a good idea to go along to your appointment as informed as you can be with lots of questions. It does make you feel more in control and helping to decide what happens next.

Good luck with your journey and rant away on here whenever you need to we are all here to help.

Hugs jackie xxxx

[iamstillme]

Hi Shen .

Keep strong . You can continue this fight . For you and all your loved ones

Speak to your specialist asap for advice . Counselling may be useful

sending you a great big cyber hug

love

Ally

[shen]

thank u.. yes my husband keeps saying i should have some... but, am reluctant to try that just yet..x thank u for the hug... hope u okxx

luv shenx

[shen]

thank u all for ur support...its good to know that someone out there knows how u feel... i just wish they could cum up wid a cure and make a breakthrough like they are doing in other cancers... u are all so brave.... i am just cracking up..

thank u all

luc shen x

[spanishanna]

Shen, There is one set of PARP inhibitor trials running out of Newcastle by a Prof Plummer. I have looked into these and my daughter has already had a meeting with Prof Plummer re my case. Google her, she is on You Tube.

I appeared never to have the BRACA gene, but the way my cancer is evolving my Onc is now wondering if I have. He has been in touch with Prof Plummer, but treatment is not easy with me living in Spain and I would have to be genetically tested which is very expensive. We will follow it up.

WHEN YOU HAVE THIS DISEASE NEVER SIT ON YOUR LAURELS - YOU HAVE TO BE ACTIVE.

Good luck , I don't know where you live but there could be trails in your part of the UK.

I am into my 6th year of fighting late stage o/c, never give up. My motto is - whilst I have cancer, cancer does not have me !! I have been on chemo for 4 years without a break, you can fight the disease, it is hard but a lot of will power is needed.

I think you sound as though you need one big hug (())

Love Anna x

[shen]

hi everyone... sorry not been on f b lately.... just read all ur comments... thank u all of u for taking the time to ans my question.... all i can say is if courage was a cure then i think u all would have beat this disease.... i take my hat of to u brave ladiesl thank uxxx

i really need to think abt this.. do i try chemo now or try a parp or vice versa???? xx

[Hidden in reply to shen]

Hi Shen,

Glad you are back, you can still give Ruth Payne a ring tomorrow she might shine some understanding on what you should do tel [phone]

Love x G x

[iamstillme]

Hi Shen

Please do discuss with oncologist who will know best . Know it is hard we all have our dark days . However dont believe in giving up . Who knows what knew drugs will be available in a few years and ask you can see from this website there are ladies who have had long remmissions between treatments . Also ladies who after treatment no recurrence . The inspire website has survivor stories as well that hope will give yknou hope and inspiration . You know we are all here for you

Ally xx

[Chez]

Hi Shen,

I went to the Royal Marsden last week. I have now had 3 relapses and am now going on the Olaparib trial. I do feel happy about going down this route at this moment in time. I know how difficult to make any decisions at times - it all gets so complicated. I have the BRCA 2 gene alteration. There does appear to be evidence that parp inhibitors do have benefits for women with BRCA 1 and 2 and that remission time can be longer. I agree - you do need to talk it all through with your oncologist and have it all explained clearly.

Good luck. I do find it hard to keep my head in the right place sometimes and I find that that's the thing that matters most with all of this. It's not easy but asking for help can only be a good idea.

With love

Linda x

[Hayleysheena in reply to Chez]

Hi I am 60 years old I have BRACA 2 gene and my cancer has returned for the third time and it is back in my lymph nodes. I have been offered two trials one for Olabrip and one for Ruccarib. Has anyone had any experience or knowledge of these. I cannot find any data or results to see which is most successful. Any help would be appreciated.

Hayley

[Chez in reply to Hayleysheena]

Hi Hayley,

I am on a trial at the Royal Marsden which has olaparib and another drug. I have been on it for 4 months. I have heard of rucaparib and other parp inhibitors which I understand do the same job, olaparib being the most well known and trialled I believe. However, I do not know which is the most successful. Good luck with whichever you decide upon.

Linda

[shen]

Hi linda

Thank u for ur answer..... I go back in three weeks... And already im frightened.... My head wont stop going round and round.... What if..... I do t k ow if or how im gonna cope if i get bad news... How do u all manage to live years .. All the time waiting on tbe nect round of blood tests...

The stress of this is awful.... To live like this is just.. A living hell....im sick of fear.. Sick of thiis constant stress....

Sorry for goi g on like this... I do really appreciate ur help.

Thamk u so much

.luv shen