How many have been diagnosed with Carcinosarcoma?

Hi All

Not wanting to be divisive about ovarian cancer,( I never thought I would ever write that sentence in my lifetime) however I was wondering how many women using this site have a diagnosis of carcinosarcoma?

I have been told it is "rare' and that 's why there is little research to date, and there are not enough numbers to do any research currently.

Many of the trials specifically exclude carcinosarcoma

I wonder if it is worth trying to work out how we would find out how many women nationally have this diagnosis and use this as a basis to at least see if we could have a standard for treatment, and provided a pool for research. I know my consultant has never dealt with anyone with this before yet there is expertise around in other areas.

If people are interested we could ask Ovacome to help us in this direction

What do u think?

I would be happy to collate names/nos of women

Donna

29 Replies

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  • Hi Donna,I was diagnosed with carcinosarcoma stage 2c. I would be more than happy to do whatever I can to help in research etc. Add me to your list and let me know if there's anything I can do. Lisa xx

  • Absolutely a good idea.. Advanced CArcinosarcoma July this year.

  • Hi there Donna ,

    Stage 1c diagnosed Carcinosarcoma Jan 9th this year ..

    Donna please add me to your list ..with Jackie and Lisa on this one .

    Love Jan xx

  • It might be worth contacting Ovarian Action Research Centre. My contact there is Abi Begho

    Abi Begho (née Ajose-Adeogun)

    Healthcare Project Manager

    Ovarian Cancer Action

    8-12 Camden High Street

    London

    NW1 0JH

    Email: abi@ovarian.org.uk

    Phone: 0300 456 4707

    This is a research body that is working across 12 centres in the UK and with centres of excellence in other countries because they recognise that there aren't sufficient numbers of women with the rarer Ovarian Cancers to compare research and treatments. Perhaps Carcinosarcoma is one of their interests - or they may know who does.

    Hope this might be an initial lead for you.

    It seems to me to be worthwhile grouping together to do some research into what is going on for you.

    Love and luck xxxx Annie

  • Dear Annie ,

    Do hope you are feeling much better now ??

    Thank you Annie for the above info ..you really are a star * xx

    Although what we have is rare its still treated by the gold standard of Carbo and Taxol .There maybe other different types of chemo that could be used at the start of treatment that is not known to some Oncologists ....

    Love Jan xxxx

  • Dear Jan

    I do feel BETTER! Sorry for the rude caps but I was so excited yesterday morning when I opened my eyes to the joyful feeling of no pain, no sickness and to the realisation that I'd slept the whole night through without needing to go to the loo. I felt like a 4 year old and my husband laughed like a drain too.

    I'm sorry I worried everyone. I'm back to normal now. Normal? Me? ha ha.

    Love Annie xxx

  • Dear Annie ..

    So pleased you are feeling like a 4 year old again ... Love that ...as I have the same out look on life too ..drive poor hubby up the wall at times .... gave him a most detailed account of my new hair growing almost daily ..well it felt like it at the time ....

    Glad you are feeling normal xxxx

    Love Jan xxx

  • Hi Jan

    Your comment did make me laugh! I finished my chemo in May like you and my hair is probably about the same length as yours although it has grown back curly. Every day I used to study mine and insist my husband did, it was wonderful to see it growing back lol!! My 3 year old grandson used to call it 'cat fur' It's grey and a lot thicker than it was...I love it!

    Love Linda xx

  • Hi there Linda ..

    It is indeed very curly now ....but need it to pass this stage before I have it cut then need to find a new hairdresser as my old one has given up .... wish I knew why !! bit of mystery that ... Well Linda it is very exciting when our hair grows back as of course we would not remember it growing the first time around ..such fun .... trouble is all the other hair has come back too ..like facial hair .....

    Love Jan xxx

  • Hi Jan

    Not long enough to have it cut yet, saved a fortune this past year! Hope you manage to find a new hairdresser, you get so used to one, it's trusting someone else to do it. The downside is all the other hair, I'm sure I never had hair like that on my face, and it grows thick and fast on my legs but not my underarms...very strange. Oh well it's good to see it anywhere after having none lol!

    Love Linda xx

  • Hi there Linda ..

    Giving the fingers a rest from the pen ..Christmas cards .... Know what you mean about the other hair .. its all soft and downy and on my face ! ..never was quite like that before .... Glad its fair ....

    Not looked for a new hairdresser yet ..my friend Wendy has tried the new one in our area as we had the same one and she was rather pleased with how her hair turned out ... Yes so do agree its great to have it back and to start to look like me again as was not too sure who she was in the mirror with out hair who looked back at me each day .... ... its like I have returned ...

    Back to the cards ..getting through my Ovacome ones ..might need some more ..

    Take care now xxx

    love Jan xxx

  • Dear Jan

    I've been hibernating for 24 hours. Have developed a rotten cold. I think my natural defences are a bit low. I had to do a talk on behalf of Ovarian Cancer Action last night and my wonderful hubby came home early and took me there. I don't think I could have got myself there and back as well as the talk as it was nearly an hour's drive both ways and the evening didn't finish till 9:30.

    Today the kitchen was connected up and we had people calling by for lunch but not soon enough for us to make lunch. Martin and I spent the morning frantically cleaning up and making the place look as presentable as possible despite the builders equipment and dust everywhere.

    We went out for lunch in a cafe nearby. When we got home this afternoon all I wanted to do was crawl into bed. Martin's popped out to buy some tinned soup so that's all that's been prepared in our lovely new kitchen.

    ah well - tomorrow I'll improve I'm sure. xxxx Annie

  • Dear Annie ,

    Wish I could send you some of my veggie soup that I have Just made ...added fresh chillie just a small amount but it gave it a nice bite to it ... Now thats what you need xxx

    I am so sorry to hear that you are not feeling very well having a cold after the sickness bug is the last thing you wanted .

    Great news that you are now connected up .... and there will time for cooking and baking when you are feeling better .

    Hope you are going to take it nice and easy on Sunday with plenty of TLC from Martin .

    Honey and lemon is very good for a cold if you like honey we always had that as children when poorly .

    Get well soon xxx

    Love Jan xx

  • Dear Annie ,

    Wish I could send you some of my veggie soup that I have Just made ...added fresh chillie just a small amount but it gave it a nice bite to it ... Now thats what you need xxx

    I am so sorry to hear that you are not feeling very well having a cold after the sickness bug is the last thing you wanted .

    Great news that you are now connected up .... and there will time for cooking and baking when you are feeling better .

    Hope you are going to take it nice and easy on Sunday with plenty of TLC from Martin .

    Honey and lemon is very good for a cold if you like honey we always had that as children when poorly .

    Get well soon xxx

    Love Jan xx

  • oooh your veggie soup with chille sounds right up my street. Luckily I'd made some leek and potato soup the day before so I had some of that. Martin doesn't like home-made soup for some reason. I love it.

    I went out yesterday for a couple of lemons. They're just the job. We had a boiling tap installed yesterday. I'd laughed when I read up about it's various uses other than making tea. One was to create steam for a facial. I remembered that last night and made a bowl of steaming water, put a towel over my head and inhaled. My word it helped!

    I'll be back on form soon. Loads of lovexxx Annie

  • Hi there Annie ..

    Its bright and sunny here in norfolk but so very windy .... Norfolk has lost a few more trees in the strom last night ..but I slept through it ..good old ear plugs ...

    Your leek and potato soup sounds very nice ...

    Your face will be glowing after steaming ..good for the pores and for your chest too ...... Olbas oil is very good for a cold or chesty cough add a few drops to the bowl of hot water works a treat ..my nan use to swear by it and I always have it in the cupboard in times of need , Brian is not so keen on the smell ....

    Home made toffee is also meant to be good for sore throats and colds .

    Keep warm and take care now xxxx

    Love Jan xxx

  • That's what I'm talking about ! Yippee

  • That was in respond to Annie's post about feeling like a four year old. Just in case you all thought I was being a bit random.....lol

  • Hi Annie

    So glad you're feeling better, enjoy your weekend!

    Love Linda xx

  • Quite a few American carcinosarcoma ladies I know have been given if Ifosfamide i.e Ifex (with Mesna to protect kidneys) at the outset or for second line chemo. It's a very strong drug with nasty side effects and tends to be administered over four days in hospital. It is the onco choice for sarcoma patients which is why it's given for carcinosarcoma with carbo I think.

  • Hi there Jackie ..

    What chemo are you having ?

    I had from Feb to end of May Carbo/Taxol ..

    Love Jan x

  • Carbo taxol. Had fourth treatment yesterday.

  • Can't believe I posted you a reply at five o'clock in the morning ! lol . Had chemo yesterday and I always get insomnia the first few days if not more.

  • Morning ....

    But you could be sleeping now as you were up through out the night ....

    So glad that you are nearly at the end of your course ...

    I didn't have too many sleepless night ... the nurse told me to take my Steriods at breakfast and lunch time and that seemed to help more ..had more bad nights when I Shingles ..that was really awful .

    Jan xx

  • There is meant to be one in three...but there is already four...such a good idea... but not me

    Best wishes love x G x :-)

  • Hello

    I've a carcinomasarcoma 1C diagnosed in June 2012. I've had a total hysterectomy and just finished 6 doses of carboplatin yesterday. Anything to encourage research into this little known variant would be welcome.

    Love Christine

  • Hi all,

    thanks for this

    Annie thanks for the contact which i will follow up

    lets see if more women respond!

    is anyone going to London on Wed?

    Donna

  • Hi Donna, i was diagnosed with Ovarian Cancer on 7th August 2012 i also had Cancer of the Lymphnodes and a large Tumore in my Pelvis. I have had a Total Hysterectomy on 18th September, unfortunately i had a Blocked Bowel diagnosed on 3rd October and had a Bowel Operation on 6th October. I then collapsed in my Kitchen with Seizures on 22nd October. I have spent most of the past 3 months in and out of Hospital. I start my Chemotherapy on Friday 30th November i am having what they call Car/Tax in Chemo language and i am having Avastin as a Trial Patient as well. I have been told i will lose all my hair within the next 4 weeks. I am not afraid of having the Chemotherapy and i just want to get on with it now. Its lovely to be able to talk to someone who is going through Chemotherapy as well, not that i would wish this Illness on anyone at all. My surgeon told me that the Cancer in my Pelvis was a Carcinomasarcoma Stage 4. I am having 6 courses of Chemotherapy 1 every 3 weeks depending on the Blood Test results which i am having tommorow. My next treatment will be 22nd December, just before Christmas. I am lucky as my Daughter is coming down from Cardiff for the Holidays and is going to cook a lovely Christmas Dinner for me and my lovely Partner of 20 years on 18th December cant beleive Brian and i have been togeather all this time it dosent seem that long since we first met on a Blind Date. Good Luck with everything Donna and i support you 100% in finding out how many women have had this sort of Cancer. Jeanette

  • Hi jeanette

    Thanks you so much for replying. It sounds like you have been through the mill but glad you have found this site. I have received so much support not only by posting questions but just reading the blogs which at times have really lifted my spirits and helped me to remain positive and forward looking.

    Your Xmas plans sound lovely. My son is also coming from Wales where he is at university and my husband also called Brian will be celebrating 26 years married on the 13th Dec!

    Will keep you posted re progress

    Keep in touch

    Donna

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