Stories of hope for ovarian carcinosarcoma

Hi All,

Here for my mom. She was diagnosed with Stage 3 ovarian carcinosarcoma December 2016. She is about to restart chemotherapy as her ca125 levels are rising. I already know the outlook for this disease. Since it's so rare, it's hard to find stories of people online. I read a couple here, unfortunately both ladies had succumbed to the disease. Is there anyone here who has made it passed the average less than 2 years survival diagnosis? Need some hope.

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Hi lovely,

My special person was diagnosed in March 2015 she was told celebrate her birthday early as she would live 6 months with chemo that was nearly 3 years ago she’s still here she’s reoccurred twice since and is currently dormant and on Niraparib as she’s not platinum resistant yet so it leaves options open although she’s BRCA negative we still have lots of treatment options available so please don’t worry too much there is also a lady on this site Lorraine Australia 🇦🇺 who is on 5th line treatment in 3 years from what I’ve read so we’re hopeful for the future xxx

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Thank you for the support. Trying not to worry. She is also getting genetic counselling so lets see what that tells us.

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I'm here! Think I've reached my two years and no plans of going anywhere yet. Was told had ovarian cancer 13th November 2015, then Stage IIIC, but exact diagnosis of ovarian carcinosarcoma not until 5th January 2016 (Xmas and New Year, staff away, etc. etc.) so about a year ahead of your mother.

I was NED with a CA-125 of 35 in May 2016, recurred within three months in para-aortic nodes with a CA-125 of 1290. Started Javelin 200 trial, randomised to Avelumbab only. No symptoms at all, felt perfectly well apart from some residual peripheral neuropathy from first line. CA-125 dropped quickly and scans showed disappearance of nodes, some shrunk and some the same. Stayed on trial for just over six months, May 2017, until a slow rise of CA-125 and an eventual scan showed sufficient progress to have to leave trial. Despite best efforts of my onc, was ineligible for a number of trials. Had no treatment until October 2017, all the time feeling perfectly well. Increase in CA-125 was slow, only reached 600 and something. Keep meaning to ask if this is significant, i.e. is the Avelumab still helping me?

Now on weekly Taxol. After three infusions, CA-125 had remarkably (so I am told) dropped from the 600s to 200s. I couldn't find my pen during my consultation, would you believe, so I had to try and remember it all, hence the rounding of numbers. My brain not too sharp right now. Unfortunately, I no longer feel completely well, fingers, hands, feet, digestive system, plus my brain seems to be embedded in cotton wool. Have now had five infusions, sixth on Tuesday, see my Onc on 5th December. I'm hoping the weekly Taxol is going to work, and I can get back to being me very soon.

Remember to look carefully at the data you are reading. How old is it? If the data is 2010 and is for five-year survival, those individuals were first diagnosed in 2005. Treatment changes and things move on. The average you quote, is it the median? A median value, is merely the middle value. Things such as stage at diagnosis, age, other concurrent illnesses and fitness to undergo treatment all have a bearing. Plus, I am convinced, luck.

From what I have read, particularly on this forum, not necessarily for carcinosarcoma, there really is luck to this also. There is a lot of space in the abdomen for cancer cells to grow. Do they grow into the bowel, or the liver, or the diaphragm, or the plural cavity and so on? And do the cells stay on the surface of these organs or invade the organs? Do the cells go across the brain barrier, or invade bones (rarer). Having said that, I have read that no ovarian carcinosarcoma patient has lived beyond ten years. It was US data.

What type of chemo is your mother having for second line? From the dates you've given it sounds as if she may be platinum sensitive which is a good sign. Are there any trials available for her?

All the best! It's a very worrying time for a caring daughter.

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Thank you so much for the detailed answer on your treatment. I will read more about all the stuff you have mentioned. So far she had taxol and carboplatin. She starting her next therapy tomorrow. Unfortunately I don't attend the appointments with her because I have a small baby at home (Want her to be around to see him grow up :)) My dad goes with her so I get all the info through them when they get home. I also read her medical files online. According to her files, this time they will use Liposomal Doxorubicin 3 times. I did ask them to find out about other treatments. Apparently the doctor said they really aren't any. I will ask them to find out about any trials next time they see the doctor. Yes value is a median. I got my math terms mixed up.

I want to wish you the best in your treatment. I hope things improve.

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There are other treatments available but because carcinosarcoma is so rare, it’s not known what is the best treatment. If you need to learn about side effects, your mothet’s forthcoming chemo is known as Doxil in the States and Caelyx in the UK. There are a number of things that can be done to mitigate the side-effects.

Is your father elderly? I’m wondering if you could arrange matters so you could also attend the appointments. Is your mother being treated at a major cancer centre? A small hospital may never have dealt with a single case of carcinosarcoma. If necessary, seek a second or third opinion Be prepared to travel to a major cancer centre.

This is an agressive form of ovarian cancer and you need to seize every opportunity aggressively to increase survival time and quality of life. Learn as much as you can. Ask questions if her medical team.

Did your mother have an operation? Was it succesdful?

All the best!

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My parents are in there 60s. I don't have anyone else to take care of my son, unless I look for a babysitter. I have never left him with one. I think I will bring up the idea with them but I have a feeling they are going to strongly reject it.

She is being treated at one of the best in North America. She had a full hysterectomy and has ileostomy bag. According to her files, they removed as much as possible and chemo would takecare of everything else. I usually type up my questions to my dad as a text message which the doctor reads and answers.

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It’s good she’s in a top hospital. Hope her treatment goes well today. Perhaps your father might look after your son while you accompany your mother when she has a consultation. He may be receptive to that idea. If you’re right and they strongly resist you going, at least you will have tried.

Take care of yourself. It is a very difficult mentally for family members too

Best!

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Thank you for the suggestions and information you gave me. I did speak to them and mom agreed to take me along for the consultation. I have a couple of questions but not much. Lets see how it goes.

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Hi, As Callmemum said I'm on my 5th line of treatment in 3 years, it's not always been easy but I've managed.

I'm just waiting for my daughter to take me down for my 8th treatment of Carbo/Caelyx this will be the last one for a while I'm hoping to get a nice break over Christmas then maintenance in the new year.

Try not to worry I know it's easier said then done but when I was diagnosed my family were told I would not see the year out.

Your Mum will have options and she a unique person as we all are so do not look at statistics..Take care Lorraine xx

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Thank you Lorraine. I am natural worry wart, trying to get past it. Mom is a fighter though. She has a very strong mind. Hoping that it pulls her through this.

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Thank you everyone for posting your stories. I will keep you all posted on my mother. I hope we get more stories so they can bring peace of mind to someone else like me looking for some hope.

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I was diagnosed near the beginning of 2008, so it will soon be 10 years, though I have had recurrences, & am currently on hormone treatment. I know an older lady though who had treatment for ovarian cancer 27 years ago, & has had no trouble with it since. Di

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Thank you for sharing. If you don't mind me asking, was it ovarian carcinosarcoma? So far I haven't heard of anyone survive it for that long. I'd be really happy to hear of someone who has.

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Mine was GCT, & I don't know what type the lady who was treated 27 years ago had.

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Hi I was diagnosed in may 2013. Am still here after 4 reoccurrences, I think I added up 30 odd sessions of chemo plus avastin (cant remember how many of them) two sons got married and three beautiful grandchildren, lots of brilliant holidays and wonderful times. Currently on niraparib which although not stopping it as ca125 slowly rising (currently 779 which for me is pretty low!!!) does seem to be keeping it at bay. That first year I really didn’t think I would make it to Christmas but hey am still here and this year having whole family, and a couple of in laws, for the festive time. What I want to say is there is life with oc, perhaps not the one we thought we’d have but sometimes I think a more special one. When you have been given a diagnosis like this it makes you realise how incredibly special and delicate life is, something others don’t always realise, and so we learn to make the most of every moment. Gosh that’s a bit deep for me 🙂 but there is always hope and science is moving so fast no one knows what’s round the corner. Big hugs to you and everyone else here x

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Amazing :) Wish you a long happy life. Your story made me feel so hopeful. My mom's Ca125 was 164 last week. 2 weeks before that was 73 and I thought that was high. It doubled in 2 weeks. I am reading other people's numbers and some of much higher than my mom's and looks like they are managing well. I hope it doesn't go up but if it does atleast I know she will be ok.

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I was told by my onc it’s just a number not necessarily an indication of how good or bad things are, my highest was 12,000 odd, and although it rising can show progression it is not always a reason to jump in with chemo. Symptoms and a scan more useful. I can’t promise your mum will be ok in the long term but she has you and she sounds strong so enjoy life as and when you can. Good luck x

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Hi Iwas diagnosed stage3 serous OC carcinoma sarcoma in August 2012, now aged73 and 4 rounds of chemo later, still making the most of everyday good and bad days thanks to a loving and supportive family. Lots of love to you all. Bridie

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Thank you so much for sharing, this is exactly what I was looking for. Are there any tips and suggestions you have that helped you.

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Hello! Sorry to read that your Mum has this hateful disease. In case you didn't see my post six days ago, it was called 'So Lucky', and it's a message telling my story. I wrote it to give people hope. I'm celebrating having survived for 13 years this month, since diagnosis. We hadn't expected me to live for four months. If you click on the circle of flowers on the left it should take you to my Posts. (I think!)

Wishing your Mum good luck and sending you both love and a big hug ((((((HUG )))))), Solange 😊

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My goodness. Just read your post and your profile. Bless you. Thank you for sharing. Wish you the best on your journey as well.

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