I have had a recent diagnosis of a Somatic Braca 1 mutation. I started on Olaparib last week and have been asked to stay on it for two years. I am looking for other women who are on the medication too. I would love to hear how long you have been on it, any initial reactions/symptoms and also any long term changes to these reactions/symptoms.

I have 16 questions ready for my oncologist regarding the drug which I'm hoping she will be able to answer. ;-) So far, my GP, pharmacist and gynaecologist-onc surgeon have either never had anyone on it or are only mildly familiar with it. As I live in Gippsland, Victoria, I think I may be the only patient they have that is on this medication.

Looking forward to hearing from you.....

Jenn

Where can we get tested for ovarian cancer in India?

My boyfriend's sister was diagnosed with ovarian cancer stage 3c in sept 2017. She has the BRAC1 gene. Her mother was first diagnosed in 2013 with uterus cancer, it came back in 2015 then again in June 2017.  She sadly passed away in Nov 2017.

My boyfriend's sister had surgery as well as chemo. A small tumour has come  back just a year after her first treatment in her abdomen area. She had radiation but doctors have seen stopped that as they believe it has spread to the abdomen lining. She is waiting for her CT scan results.

In the meantime we( family) have done research and has anyone had HIPEC surgery?

If so, which hospital/ surgeon?

Any replies would be greatly appreciated.

Thank you in advance

Lina

Chemo took it's toll on me, I had 2 blood transfusions, 2 infusions of magnesium and a platelets transfusion. Not to mention putting on 12kg from the steroids.

Due to my other conditions my oncologist kept a close eye on me with blood tests every month and a follow up with her monthly. Since finishing chemo I have done a number of exercise programs including the Cancer Council's Enrich program and I am currently doing Active Survivor twice a week. So I was just starting to feel back to my normal self and everyone was commenting how well I looked, plus my hair had finally grown back enough to have it cut into a style.

As I said before my oncologist has me see her monthly, so my CA125 was 12 then 13 4 months in a row, then 21 then 35, she told me that that in itself wasn't a problem but we would continue to monitor it. Then just over 3 weeks ago I experienced pain in what I would call my 'Muffin top' area, it wasn't bad pain but continued for a couple of days and then intensified on about the 4th day. I instinctively knew something was wrong so I rang the cancer centre and pulled my appointment with the oncologist forward a few days. I had a blood test and then went to see her hoping that she would tell me I was suffering from a case of Stupidity and Paranoia. My CA125 was 48 and when I told her my symptoms she said that it looked like my cancer might be back! It was a year to the day since I saw her for the first time and 6 1/2 months since finishing chemo.

I had a PET scan and I have 3 spots 10mm in size near my liver and gallbladder. She said we will do another 6 rounds of just the Carboplatin every 3 weeks depending on my bone marrow and then I would be taking a drug called Olaparib (I'm BRACCA 2 positive) but I don't know what happens from there.

I had got just past the 2 year mark when my Ca125 went up. On a PET scan there's only a small spot between my liver and kidney and my gyny-onc and oncologist have gone to ground to discuss what the plan is. I had finally started to feel like I could relax and live again. I feel angry and frustrated and unsure how to live in this "unmoored" place.

Any ideas?

kath

I'm a newbie. My name's Julia. I am 43 and have 5 children ranging from 23 to 11. I was diagnosed with stage 4  two months ago. It's been a bit of a steamtrain. I was admitted to hospital with 5 litres of fluid and zero aeration in my right lung. An ovarian cancer cell was found in my lung fluid tested at John Hunter. After the chest drain, I was referred to oncology as an outpatient.

The cancer is in my ovaries, uterus, fallopian tube, liver, lymph nodes and lung. Now possibly also in my breast. Just had suspicious mammogram. Awaiting results of MRI. I just found out I have the BRCA 1 gene. I am having chemo to get rid of the cancer and fluid in my lung so that I am able to have surgery. The doctor says I must have zero fluid before I am able to have surgery. I have also been referred for a double mastectomy to the breast surgeon but really it's not as much of a priority as surgery on the primary cancer as I already have stage 4.

I thought I had ovarian cancer (I had all the symptoms) and I thought I had ruled it out 2 years ago. I'm obviously not meant to find out until now, when I am at stage 4. There will be a higher reason for that. I think it may be to help people. Stage 4 packs a harder punch, somehow.

I am doing really well and just taking one blow at a time. I am happy. Sometimes I get wobbly. A couple of times I have been terrified. I came on here to connect and also find out a bit more about what to expect in terms of surgery (I know nothing) and also what the doctors need to see before they give you the all clear initially. Thanks for any light you can shed. I'm new to all this. Xx

I am pleased that this online forum has been established and am looking forward to further discussion, participation and support that this sort of forum can offer.

Take care  Helen