CA 125 and BRACCA 1

[Ange09062016]

I have finished one cycle of chemo and my CA 125 went from over 3,400s to 1,594. So that is good news. However, I found out I'm BRACCA 1 positive. I was wondering if anyone was in the same boat and how it changed your treatment? Im waiting for my appointment with my DR.

[Katmal-UK]

Hi Ange. I am BRAC2 and currently on a parp inhibitor trial. Might be worth asking your Dr/Consultant about the availability? Wishing you well. Kathy xx

[sundaravalli in reply to Katmal-UK]

Hi Katmal,

I am dianosed with stage 4 OC and newly diagnosed. Undergoing chemotherapy with carbo/Taxol 6 cycles.. Ia m on 3rd cycle now. No surgery yet. I am BRCA2 positive. I would like to know what is your course of treatment and how long? I would like to have some information and tips pls. I have mouth sores and low blood count and my chemo is on hold.. When did they decide on PARP inhibitor for you?

[Katmal-UK in reply to sundaravalli]

Hi. I was diagnose stage 3 in 2007. I have had 3 rounds of chemo, One in 2007/8 along with Avastin trial for a year, again 4.5 years later followed by cediranib trial for approx 18 months, then the third course after which they put me on the olaparib trial. I have been in remission, no evidence of disease since August 2013 and started on the Olaparib in January 2014 about a month after completing my 6th cycle of Cisplatin. I had to stop Carbo during my second course and cant have it anymore as I had a bad reaction. The mouth sores and low blood count are normal when undergoing chemo. Its cumulative and theres many a time I think all of us feel like giving up. hang in there it is worth it . Speak to the chemo nurses they can help regarding the sore mouth, your blood count will pick up so I doubt your chemo will be on hold for long. I had a few times when mine was on hold. Take care, remember to be kind to yourself. Kathy xx

[sundaravalli in reply to Katmal-UK]

Hi Katmal,

Thanks for your reply and encouragement.

[Steghart in reply to sundaravalli]

I rinsed with bicarbonate of soda twice a day throughout my chemo and never had a sore mouth, worth a go! xx

[Lyndy]

Hi Ange

I am BRCA 1. I finished my first cycle chemo in Feb and have been on Avastin since. I think that treatment may be different if I get a recurrence - I am hoping that Olaparib or another PARP inhibitor might be offered but at the mo I think they only suggest this after 3 cycles. I am watching out for trials and prepared to go to a specialist centre if need be.

I found joining a support group for BRCA was helpful.

All the best to you xx Lyndall

[Ange09062016 in reply to Lyndy]

Thank you for your response.!haopy to hear your treatment is going well.

[grannylo]

Hi I too am BRCA1. Had high CA125 numbers and good response to chemo. Standard treatment for first line. Had double mastectomy after initial treatment. Feeling good and doing well. Plenty options for treatment along the line.

Loraine x

[Ange09062016 in reply to grannylo]

Thank you, yes I'm thinking the mastectomy would have to be done.?

[Lauramarie68]

People with Barca have a better response to chemo is what my genetic counselor told me.

[Ange09062016 in reply to Lauramarie68]

That's good to know.,thanks

[nettieanne]

Hi I'm Brac 1 positive and had a good response to chemo , I've been olaparib for 4 years now , could be a good idea to ask about a parp inhibitor when u see your consultant next . Hope u get on ok

[Steghart]

I'm brca1 too, I echo the above comments, also my daughter is in the process of being tested so that she can be more proactive than I was able to be, I also had a prophylactic double mastectomy, I was damned if I managed to get through this if another bugger was going to get me!! Mind you first breast surgeon refused to operate as he said it wasn't worth his while with my prognosis!! I found another one! I am now over 5 years after initial diagnosis and very much still here. We do respond better to Platinum based Chemo. Good luck, Claire xxx

[Ange09062016 in reply to Steghart]

Congrats on the 5 years!! Thanks for the response.

[KarenArcher]

Hi I can tell you a bit more xx

[Ange09062016 in reply to KarenArcher]

Please do

[Hairlessbeauty]

Hi,

I am 38 years old mum of 6 years old boy, BRCA1 positive. Was diagnosed with stage IIIc Ovarian Cancer last year. Had very extensive debulking surgery, all my abdominal organs were effected by cancer, following 6 sessions of chemo. Finished my treatment September last year. Clear since that. Now I am waiting for breast removal and recontruction due to high risk of developing breast cancer. I am scared, so affraid the cancer will come back and will hit be harder, but also thankful that i am still alive and can watch my baby growing. Will be fighting hard if....

Best of luck with your treatment, you can read my full journey through the cancer if you wish

hairlessbeauty.co.uk/my-story/

Take care,

Zaneta, xx

[Steghart in reply to Hairlessbeauty]

I was 47 when diagnosed with a 13 year old daughter. The double mastectomy was the best decision I ever made, a walk in the park compared to my other operations and chemo! I was scared too but now I just try to enjoy each moment with my children when I feel well and make memories. There are lots of new treatments just around the corner and Chemo works for us BRcA lot pretty well so we keep on fighting! Good luck xx

[Rlenesue]

Being braca1 is pretty special regarding treatment. On one hand you're more prone to breast, ovarian, and primary peritoneal cancers due to this gene. On the other hand being braca1 actually makes the cancer get eradicated, basically, it's more sensitive to the chemo, thereby removing these cancer cells. My ca125 when diagnosed was 25,000 ,they stop counting at 25,000. My ca125 is 24 with a clear ct scan after chemo, surgery, and chemo for prevention afterwards. Good luck!

[Ange09062016 in reply to Rlenesue]

Good to know! Congrats! How long have you been in remission?

[Rlenesue in reply to Ange09062016]

Not long, about 6 weeks. But I plan to stay that way. I was in remission 8 years before that.

[Meryl1]

Hi Ange. I am BRCA1, I found out last year (if only earlier!), after Stage III diagnosis at the beginning of 2007. I have had average periods of remission of 2.5-1 years but now need to be on chemo long term, for as long as the particular drug works. Currently I'm on a clinical trial BIBF, which is going well. As parp inhibitors work as a maintenance drug I believe, drugs like olaparib weren't offered to me until my remissions had passed, so not effective. So, I'd say press really hard for olaparib as soon as you get remission. Good luck, Meryl X