parp inhibitor trials for braca psatients

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1

hello there.

 

i have just started a parp inhibitor trial 2 weeks ago,  I have BC in lungs liver and bones and am braca positive and estrogeqon postive. Put me on the trial after tamoxifen stopped working after 3 years, lerozole did not work and CAP didn’t work.  Parp seems to be working feeling much better than i am  back to work next week.  Would love to heqr from anyone else going through the trial as qell to compare notes.  I know there are not that many of us tough.

By the wqy - so far no SE - it has only been 2 weeks though.

 

Have been living with stage 4 for almost 4 years now. I never thought I would still be alive and feeling good and still working!

 

SpringSummer

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Hi Springsummer, I’m not on the same trial as you but just wanted to say glad you are feeling better. Best of luck for good results and continuing to feel well!

 

Tournesol

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thanks touransdel

 

just reading my thread can’t believe how many typo errors - that can’t be se can it ! ss

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Hello darling!   (catlady) lovely to hear from you.  The trial is called ABRAZO  and it is for mets breast cancer for ladies with the BRACA gene tell him!!!  Your hospital is making me very angry. I started almost 3 weeks ago and certianly it seems to be working feel much better and so far no side effercts. Went back to work today. It was lovely everyone was so welcoming.  Very tired now though.  Look after yourself  xxxxxxx

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an update on the trial - had a scan and results today. seems to be working. liver mets reduced, lungs not changed but i feel so much better with my breathing onc thinks it must   have improved and the scan has not caught up with what is happening (?).  I do feel almost back to normal and NO SIDE EFFECTS that I can feel.  Tourensel - how is your trial going?  If you are BRACA I really would ask your onc to put you forward for this trial… only drawback is I don’t think it lasts that long. the median time for women on this trial is 6 months before it stops working. I may be that exception though and carry on for years. 

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Hi SpringSummer,
That’s great news about your scan results, and many people will get longer than the median so hopefully you will be one of them. I won’t know for another 6 weeks if mine is doing anything. But not feeling too bad on it. It does seem to have raised my cholesterol so will have to keep an eye on that. But also found out today that some of the progression I was told about a few weeks ago is now thought to be benign so that’s good news ?.

Best wishes,

Tournesol

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thats great about the progression.  x

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hi helen. yes do remind him. it is called abrazo but there are a few trials with parp inhibitor going on.  glad to read you are home. honestl;y i grt do furious when i read your feedback about your onc team. Grrrr. 

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sorry catlady, forgot to mention as this is not chemo your uggers may get confused and not adapt so soon…

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Hello catlady nice to hear from you. Its going ok. first  scan after 6 weeks showed a decrease in the liver and my coughing stopped.  Next scan in 4 weeks now. Funny thing is just yesterday  began to think my breathing is getting worse again. Don’t know if it is maybe because I have a slight cold or if it has stopped working. You know what this disease is like. you  get paranoid over the slighest thing. How are you doing? How is your spine?  how are you feeling?  Also did your Onc manage to investiagte any trials for you? The SE are really minimal on PARP.  

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Hi spring summer,
Great that you are in parp inhibitor trial and doing well. No side effects sounds wonderful! Is it being done from your local hospital or centralised? London?

Please may I ask, are you BRCA1 or 2?

I’m 2.
BW for ongoing good effects :-). Carrot

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Hello Carrot

 

sorry can’t remember if i am 1 or 2 BUT I was Eostrogen very positive when it was diagnosed. 

i don’t think it depends on where you are for the trial anyone can do it if you fit the criteria it is up to your consiultant to recommend you for it (I think). But check with your Onc.  My trial is called ABRAZO but there are other parp trials going on.  For mine I had to be Braca plus had 2 chemos beforehand and be quite healthy . (relatively)

 

By the way catlady - still working well feeling just about back to  normal at work full time… breathlessness gone… fingers crossed.

 

 

 

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Sorry - forgot to mention i’m at the Marsden doing the trial x

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Hello Carrot 

 

20 years go i could have helped you with the smokes. but not now I’m afraid also don’t know where to get it from.  

I went for my results today and all good ( thank god) my mind was imagining all sorts of things, but tumour continues to get smaller and lungs looking better as well.  The Onc ( seems to be a specilaist in trials) did mention there are a lot of new drug trials coming up for BRaca patients. i did not ask too much as just wanted to get out of their asap! But let you onc know when he discussesit with his expert on braca. 

 

all the best ss

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thanks catlady. you really are lovely.  So happy for other people when they are doing well.  You are a special lady

 

SS

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thank you carrrot. no the consultant’s initials are nt. he delivered a paper on a new breast cancer drug the other day in switzerland same time as the immunology one that got all the headlines. he is at the marsden… the new drug he  was talking about in switzerland is a hormone one on a stage 3 trial and looking v. promising as well i think. anyway, yes will celebrate and not worry again for 6 weeks!  SS

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results from last scan today - all stable. so still working. really pleased but more se kicking in now. hair is thinning and my left eye is twitchy. does anyone know if these se will settle down and get a bit better?