I am not being offered alternatives, compassionate access, nothing. I have to stay well for as long as i can. To be on nothing is not an option for me. I am not BRCA1 OR 2 yet i cannot access anything for maintenance that is wirhin reach. Surely there are more choices or options than this?????? How is this fair or reasonable? I feel more stressed and scared than when i was first diagnosed and i feel i am being spat out of the system.

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

I never suspected I would find myself on an Ovarian Cancer forum seeking support - but these are unique times we are in, after all.

Originally from Toowoomba, QLD, I have been living in the UK for the last 18 years. My 71 yo Dear Mum(DM) still lives back near Toowoomba and we tend to take turns visiting each other every couple of years. DM has grown to love travel and calls herself a "World Traveller"! On 7 Jan this year, I got the phone call I always dreaded getting living halfway round the world- it was DM to tell me she has been diagnosed with OC Stage 3. Symptoms??? The usual suspects - abdominal pain, some bleeds, ascetic bloating.

As a registered nurse in the army, I'm quite composed and professional and like to think I handle stressful situations well, but soon realised this all goes out the window when its a family member, especially your DM. I went into practical mode for her - contact the OCA and got fantastic advice and lots of resources to send to her in Toowoomba. The team on the end of the email when we got the first diagnosis

DM handled 10+ weeks of chemotherapy like a trooper, being much stronger and more positive than I ever gave her credit for (and that I probably came across as!). I suspect she's had a relatively easy chemotherapy journey than some of the stories we have read- no nausea or similar side effects. She has lost her hair but take it in her stride. I think she quite likes the lil' caps she now wears! She has smaller weekly doses rather than every 3 weeks.

This Monday (11 May 20) DM heads to Brisbane for surgery to have 'everything he can see with cancer on it' removed (her consultants words!). Unfortunately, we've just heard her post-chemo scan has picked up likely cancer on the liver, bladder, bowel and diaphragm :(. As always, she is keeping positive.... and that's a motivation for me to ensure I do as well. I can have my moment when the Skype turns off......!

COVID-19 has exacerbated a bad situation and made it worse as I would be in Australia supporting her as opposed to still being here in the UK. The solace is she is from a small country town with all the benefits that brings at times like this- a close knit supportive community who will rally around and the family back home.

Whilst DM is not completely techno-naive, the forums I suspect would confuse her. lol. So, any messages of support would be greatly welcomed. I will login and show her my screen over Skype. Whilst I, her friends and close family can be sympathetic, sometimes all you need is to hear from is someone who has been through things themselves and speaks with the authenticity I'm not able to do.

Many thank for taking the time to read this... I'm looking forward to my DM being a cancer survivor and coming on many more trips to UK to see me :)

Nurse81 (Patrick)

Apart from feeling tired and  not motivated to do anything much chemo has been relatively kind to me except for weight gain ( others lose weight but not me) from the steroids I think!!

I am keen to find a drug trial. As I live in Darwin this will be an obstacle to overcome if I am successful.

If anyone has any ideas regarding  dealing with  a reluctant bone marrow or potential drug trials I would be most appreciative of your advice. Best wishes from Sunny Darwin

Where can we get tested for ovarian cancer in India?

So, good luck Nicole!

Ovarian Cancer Australia, Counterpart and Mercy Health are excited to announce a free “Living with cancer and wellbeing” day for women with, or following, a gynaecological cancer diagnosis. The event will be held on the 3rd of March at Mercy Hospital, Heidelberg VIC where you will have the opportunity to:

- Learn from psychologists about ways that may help improve how you feel

- Connect with other women who have experienced a gynaecological cancer

- Try wellbeing activities with experienced practitioners including yoga and art therapy.

To register, please follow the link: https://www.eventbrite.com.au/e/a-free-living-with-cancer-and-wellbeing-day-tickets-88598138417

Or call 1300 660 334

Can anyone recommend an empathic gyne oncologist who is proactive and holistic in their treatment approach, and up to date with relevant trials?

Many thanks

Tara16

Wondering if anyone has any experience of going from treatmeant at a public hospital (e.g. Peter Mac), then getting surgery done privately (to avoid longer wait times publically), then going back to public for ongoing treatment? Would the public doctors have a problem with this?

A bit of background: my mum was diagnosed with 3C OvC in June 2017, received carbo/taxol chemo and had debulking surgery (went from CA125 in the 3000s to single digits), then recurred with spots on the liver after only 5 months NED. Since recurring, she's had tamoxifen and then participated in a Durvalumab (immunotherapy) trial. On scans it appears that the cancer hasn't spread anywhere except for the liver, but there is a new spot on the liver so she has been kicked off the trial. Since it's been over a year with minimal spread they're willing to consider surgery to remove the liver spots, which mum is very keen to do. Everything in the public system seems to be going super slowly lately and she hasnt had any treatment since early June. They still haven't made a surgery date despite agreeing to it weeks ago, nor have they agreed to or put her on any alternative treatment in the interim.

We're super keen to get her some treatment asap, which is why we're investigating getting the surgery done privately. Just not sure if that will cause issues with her treatment at her private hospital down the line. If you've had experience with this kind of thing please let me know. Any experience of advice would be most welcome as we're getting pretty anxious to make a move. Thank you!

Diagnosed 12 March - First chemo 15 March

Feeling ok so far

Now that I have started my recovery journey I am ready to start finding out more

There must be so much to know

Where to from here ? An suggestions. I  can come to Melbourne.

Just saw a post from Karen and Sirin and Helen! Yay we are all still here. I am now in Massachusetts receiving treatment with the Dana Farber in Boston. Yesterday I had my infusion of Avastin, CA125 11, all numbers excellent but magnesium – 1.4 (range 1.8) so I started a magnesium oxide 400 mg supplement today. 21 days previously I had an infusion of magnesium. I swam today. Breakfast: organic pancakes with organic maple syrup, blueberries, bananas; cup of black coffee. Lunch: salmon/mixed lettuce/carrot/cottage cheese salad; green tea/lemon/ginger. Dinner: black bean soup/onions/garlic; spinach/basil/cilentro salad; Ritz pita crisps with white sharp and pepper jack cheese slices. Later: dark chocolate and apple slices.

I was so curious about people’s lives when I was first diagnosed 10/13/2016. This is why I share such detail. How were people living. Well I am living quite well thank you very much.

Anyone else find they make comments not appreciated by the infusion nurses? I am taking a sign next time and not speaking with them – just say thank you on my sign and that I am in a silent retreat. This way I will not get their attitude and they won’t get my nervous chatter they apparently don’t appreciate.

The joys of cancer one day at a time.

Healthy Now Sandra

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

My boyfriend's sister was diagnosed with ovarian cancer in 2017. We are waiting on some tests as it possibly had come back in the abdomen and we( the family ) have done some research on HIPEC.

I'm wondering if anyone is having this done at Peter Mac in Melbourne and who their surgeon is ?

Thanks in advance and wishing all good health.

Lina

Just wondering if anyone here has had HIPEC Hyperthermic intraperitoneal chemotherapy - hot chemo in the abdominal cavity) for OC that's spread?  I'll be having cytoreduction surgery and HIPEC at the Peter Mac sometime before the end of the year, and am wondering if anyone has tips for getting through it better, and for recovery?

Take care

Lucy

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 would really appreciate to hear back from anyone who has similar experience to my mum or anyone who has had Caelyx chemo and can give us some tips about what to expect

Thankyou

I lost our thread.

I will not have chemo or blood work till June 15, 16.

Longest I have been without treatment since 10/13/2016.

No blood stick this Friday either - thrilled about this.

Going on a church retreat this weekend.

Very unhappy at work - my contract was not renewed and I suspect these people are the tackiest on the Earth when it comes to managing foreign teachers.

Day at a time with this roller coaster.

Enjoy your short trip.

Sandra

I am pleased to find this forum as I have just been diagnosed. Actually it is three weeks today I went to the hospital with terrible pain in my side. What a shock to find out I have an active cancer in my ovary and several seeds of cancer in my abdomen. Off to see oncologist surgeon in sydney next Tuesday and don't know yet what stage etc. I am. All very new and scary

Here is my story...l was diagnosed with Ovarian Cancer mid November 2017, and was operated on in mid Januarythis year.  I have just started Radiation Therapy for five weeks combined with Chemotherapy for four of those weeks, then to be followed by Chemotherapy for the following five weeks.

l am still tying to process the diagnosis, everything has happened so fast...

l am unsure what l should put here as my story is a long one and l do not know if l would have enough room.

Thank you,

Sioux

I really would like to hear from ladies who were diagnosed with stage 3c (aggressive ) cancer and your journey . I have had surgery for hysterectomy but I still have cancer on the perinteneal .

my Chemo starts 29/1/18 it will be 6 weeks since surgery .

Thanks. Susan