Recurrence — OCA Connect Online Community

Ikon 9 Trial - for non BRAC

Alice — Wed, 22 Jul 2020 23:55:49 +0000

Anyone on the Ikon 9 that's non BRAC? I would love to hear your experience with the trial and how your handling the drugs. Thanks

Low grade serous

suelm — Fri, 20 Mar 2020 06:33:28 +0000

Is anyone else grappling with low grade serous ovarian cancer?

Thanks Sue ❤️

stage 4

Joan1 — Fri, 04 Jan 2019 11:27:26 +0000

Hi Im Joan, I was diagnosed with advanced stage 4 December 2014, had several occurrences since then, only seem to go about three months and I'm back in for chemo

Hi I'm Lina

Lins — Sat, 12 Jan 2019 09:55:15 +0000

Hello Everyone

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

What does this mean?

Karen26 — Fri, 01 Jun 2018 23:44:02 +0000

Hi, I was originally diagnosed with stage 3C ovarian/omentum and peritoneal cancer in May 2017. I had 3 treatments of chemo (carboplatin and paclitaxel) then I had a hysterectomy and my omentum removed in August and then another 3 treatments whiich finally finished in October. I was so excited and said goodbye to all the chemo nurses and hoped that I'd never see them again. I then saw my oncologist for what I thought would be the last time for 6 months (alternating with my surgeon) so I asked what happens from here. She told me that 80% of people with my type of cancer responded to the first round and of them 80% would recur within 6 months! This took the wind out of me, I was thinking more like 5 years.

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.

Hi- I am Joy

JoyB — Wed, 11 Apr 2018 20:07:03 +0000

Hi, I'm Joy and like my name I am generally happy and positive. I was diagnosed by accident with very early stage Ovarian Cancer in June 2016. During the surgery it was found that the cancer had actually spread to the fallopian tube but not beyond. After surgery, I completed a course of chemotherapy to "mop up" any malignant cells that may be lurking and it was with confidence I looked forward to the future. 7 months later I was rediagnosed with Metastatic Cancer and entered into Chemotherapy again. After my initial tears and a few temper tantrums I decided that I wasn't helping myself by focusing on the what if or thinking about all the things (particularly relating to my Grandchildren) that I would miss. So here are a few things I have found that have helped me:

1) If my cancer had not been found in what was thought to be a healthy ovary at such an early stage my outcome would not have been as positive. I feel blessed to have had extended time with my family.

2) I no longer work due to fatigue from chemo etc but find I am busier than ever. It might take me 3 times as long to do something but I feel great when I have managed a task.

3) Although there are some confronting discussions that have had to be had, I don't dwell on the future too much as I find worrying about the future robs me of pleasure in the present. Equally I am not stressing about things I cannot change from the past.

4) I am not perfect -far from it and every now and again I have a pyjama day but mostly I try to make sure that each day I have at least one thing that gives me a reason to I get out of bed, get dressed and face the world. It is too easy to give into the negative path or thoughts can take us. I also put news of cancer breakthoughs etc in prominent places to remind me that I just need to stay healthy and contain the tumours until the breakthrough in Ovarian Cancer gives me another positive option.

So that's a little about me, I hope I haven't waffled too much

Positivity and hope for my mum! Recurrance, platinum resistant, starting Caelyx

MaiaMH — Thu, 20 Sep 2018 13:54:28 +0000

Hi I have joined this to see if anyone has had a similar experience to what my mum is going through since she was first diagnosed in December 2017. She is 71, has never smoked and has always led an extremely healthy lifestyle. She has Stage 3 Ovarian Cancer. She had a round of chemo, then debulking surgery, then another round of chemo that was stopped early (7 out of the intended 9) because she was having bad side effects of peripheral neuropathy and her marker had gone down to 15. At this point we felt like were really lucky and had a good result from treatment and hoped it wouldn't return. Unfortunately at her first 3 month test, her marker has gone up to 69 and their is a recurrence of cancer 2 lumps and speckled across the peritoneal area. We were told this means she is platinum resistant. The oncologist says there are no trials currently open and he is looking into immunotherapy. But she will probably start Caelyx chemo if a few days. Our oncologist always ers on the more grim side of things... I just want to find some hope!

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

Reoccurrence after 11 months NED

Kanwal72 — Thu, 26 Jul 2018 08:51:40 +0000

My name is Kanwal, I was diagnosed with ovarian cancer in Dec 2016. I had 3 cycles of Chemo then surgery debulking/ hysterectomy and then again 3 cycles of chemo.

My CA125 at the start was 192, which which stayed in one digit after surgery. I have been having 3 monthly checkups. In March my CA125 was 6. In June it went to 24, so had PET Scan which resulted in reoccurrence in abdominal lining (peritoneal). Gyno/onco said that it is Chronic.

I'm back to Chemo for 6 rounds, already completed round 1.

Is there anyone going through similar situation? I need some reassurance and guidance. I'm worried.

Thanks

Hi, I'm Jenny

Jenk — Mon, 23 Apr 2018 17:15:41 +0000

Hello ladies, I am just new to this wonderful community,

I was diagnosed with Stage 3 ovarian cancer in August, 2014. I had a radical hysterectomy and omentum removed. This was followed by 6 cycles of chemo and Avastin. I had a recurrence in May 2016 and had another round of chemo. I became allergic to carboplatin so went on to cisplatin. Treatment was successful. I've had another couple of rounds of chemo since then.

I am now currently on an oral chemo called Cycloblastin and keeping fingers crossed that it has a positive effect.

Life is still good with this nasty disease. One of my daughters got married in Feb 17 and my other two daughters are getting married, one in May and the other in June. I've got my dancing shoes ready! But I'm hating the impact this is having on my beautiful family and friends. Hard lessons to learn.

January 2018 SCAN

HealthyNow — Sat, 03 Feb 2018 12:06:41 +0000

Hey family -

My scan last Saturday, which my doc read at home that night, shows the cancer has spread again to lymph nodes near the renal artery. Dang it all. I had my first shot of avastin Sunday morning with topotecan and carboplatin which apparently are not doing the job very well. The refractory platinum diagnosis is HELL. Received a lot of info from MD ANDERSON in Houston I will have to go through - my contract is up July 31, 2018. Getting to Anderson will allow me financial aid for the drugs I need with a refractory diagnosis. And a LONGER life. It will mean certification in Texas if I want to continue teaching which is a HUGE headache. So much to handle. Saturday here. Feels so good to NOT be in the hospital - able to sleep in. There are a couple of toy stores I hope to check out and tomorrow is a birthday party! Wheeeee. xoxoxo Sandra

Unmoored

kathyorkath — Wed, 23 Aug 2017 21:09:04 +0000

Hi all

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

Parp Inhibitors - Recurrence

singsongy — Thu, 28 Sep 2017 12:31:13 +0000

Hi,

My mom has had a recurrence. The doctor is talking parp-inhibitors in a carboplatinum sensitive person. Anyone here doing parp-inhibitors? They seem amazing.

Hi i am jennie I was diagnosed with Stage 3 ovarian cancer in july 2015.

jenniej — Mon, 03 Jul 2017 11:59:15 +0000

i was diagnosed with stage 3 ovarian cancer in july 2015. I had the major surgery done followed by weekly chemo for 18 weeks. developed bowel obstruction in august 2016 which was manged conservatively. I have just found out that i have a recurrence and will need more surgery and chemo, i feel gutted at the moment as i thought things were good. Its all a bit scary again but as my oncologist said we need to view it as a chronic disease and just keep on treating the outbreaks. i see that recurrences happen.

Hi I am Sharon

airfemale — Mon, 28 Nov 2016 12:08:26 +0000

I was diagnosed finally in January 2013. I have had remission and two reoccurrences. I have just finished Gem and Carb after 6 months. I am looking forward to connecting with other Australians as the only site I found before this was an Irish website. I am on Chinese herbs at the moment as I have had enough of western medicine for now. I am not saying that I won't go back on it. I just want a break.

Hi my name is Chris and I have recurrent Primary Peritoneal Cancer stage 3c.

Chris — Fri, 02 Jun 2017 20:29:25 +0000

Hi I'm interested in talking about cancer recurrence. I was diagnosed in 2010 with Primary Peritoneal Cancer which is treated similarly to Ovarian Cancer. My cancer was in the peritoneum with the ovaries only marginally involved. My cancer has returned in 2012, 2014, 2016 and looks like it is back again! Does anyone have a similar disease progression.

Chris

Reply to "her we go again"

Helen — Wed, 02 Nov 2016 16:04:48 +0000

Hi Cori, What a pest that it has come back. I had stage 3 ovarian cancer 4 years ago and had a recurrence late last year and it was on the bowel. A cancerous node had attached itself to the outside of the bowel and caused a blockage. I had bowel surgery and had about 10cm's of my small intestine removed. The surgery was ok and it did take a bit longer to recover, they used the same cut that I had from my previous surgery. I found that getting out of bed and walking around the wards really helped. I didn't need to have a stoma, which I was pleased about, however I did find that I had very loose bowels for a while after surgery and even now I am careful that I do not have too many fibrous foods, like nuts, spinich, bran, some fruits etc - all the things that you are meant to eat because they are good for you! I find keeping to this not too much fibre diet, a bit frustrating as I prefer to eat healthy to give your immune system a boost. A dietician can advise you as to what is best to eat. I didn't need to have radiation, however I did have some more chemo. All the best for your surgery and further treatment. Helen

Hi all, my name is Kerri

Kerri — Mon, 05 Sep 2016 02:23:42 +0000

I am 60 and was diagnosed with OC in March of 2014 a couples of days before my 58th birthday. I was lucky to have been treated (an continue to be treated) by amazing doctors at North Coast Cancer Institute in Coffs Harbour NSW and John Hunter Private Hospital in Newcastle NSW. I had four rounds of chemo, carboplatin and paclitaxel, prior to surgery where I had a complete hysterectomy, appendectomy and de-bulking. I was lucky that what was thought to be another tumour was an ovarian cyst so that was all removed along with a large fibroid. I recovered well from the surgery and then had another 3 rounds of chemo. When chemo finished I was put on Avastin and finished that in August of 2015. The results of all of this treatment was good with my CA125 results dropping and holding below the normal point. Unfortunately, there has been a recurrence which was discovered March 2016 when I developed ascites and the CA125 was slowly creeping up. I had been told there was a 70% chance of recurrence when I had my surgery so I was not surprised when this happened. I am currently being treated with Caelyx and had also been receiving carboplatin but it was too severe on my blood counts and was withdrawn. I am responding well to the new treatment and my CA125 has dropped by about two thirds since restarting chemo, it is still high, but coming down. My reason for joining this group was to try to set up an online support group for those of us with OC that don't live in metropolitan areas but in the country and remote areas. I have found there are cancer support groups in my area, but not specifically for OC. Sometimes I have felt very isolated when something doesn't make sense and I would have enjoyed having someone who is going through the same problem to talk to, even if it is just to: 'get it off my chest'. If there are others who are interested, please let me know. I wish everyone who is suffering from this disease all the best, my only advice would be to know there are many of us out here going through it too, and support you as much as we can. Take care and, hopefully, keep well. Kerri

Hello

chezza — Tue, 30 Aug 2016 06:27:36 +0000

hi everyone, I was diagnosed in 2013 stage 4, finished treatment Oct 2013 and reoccurrence in June 2014 and started clinical trial at RMH on Orlaprib Sept 2014.

just wondering if anyone else is on this drug if so what side effects have you had, I've had lowered potassium and magnesium levels, and for the past year my red blood cells have been increasing in size.

also I have been diagnosed with the PALB2 gene any one else also got this gene?

warm regards,

cheryl