Hello All, Can any of you with ovarian carcinosarcoma tell me what treatment you've had and how it has responded? or anything else useful?

[pixinafix]

In May 2012 I was told I had ovarian carcinosarcoma which was described as 'rare' and 'aggressive'. The better bit was that, in spite of the huge size, it was a 1c. So far I've had the total hysterectomy and yesterday a second dose of carboplatin. I'm being treated at the Christie. General searches on the web are far too gloomy to pursue, so I've stopped doing that. I would really like some first hand experiences that might get me beyond 'rare, aggressive and gloomy'.

[Jan76]

Hello there Pixinafix ..

In Jan of this year I was diagnosed with MMMT or Carcinosarcoma stage 1c .....My Ovarian mass was large and ruptured as it was wrapped round my bowel ...Had chemo starting in Feb and finished in May .I had Carboplatin and Plaxitaxol every three weeks .

I too was told the same as you ..but had a scan in July and the result was normal .... So we go forward ..its all I can do ...next check up at the end of Sept .

It is rare and very agressive ..but then it could stay away for a long time or it could come back ... as other ladies on here with Ovarian cancer have had it return .

I just take each day as it comes ..its all one can do .

Just back from a lovely break in Dorset ..walking hills that I never thought possible ...

I stay a positive as I can and life goes on ..

Love Jan xxxx

[kumara in reply to Jan76]

my mother also diagnosed with MMMT. But i dont know the stage think it is 4. Ifosphomide and now carboplatinam and placitaxol given every three weeks. I want to know is that good walking n doing exercises nw n ??? also wt abt u now ??? are there more people survive from MMMT ????

[pixinafix]

Hello Jan

Nearly said 'lovely to hear from somone with the same as me' - but I'm sure you know what I mean. my tumour had leaked, so goodness knows where all that stuff got to. They talk of the chemo mopping up the cancer cells, and whilst the ca125 is down to 11, the ct scan is only of the abdomen, which leads me to wonder if they would know if I were developing a brain tumour or pancreatic cancer, or is it up to me to realise something else is wrong?

Just been to youngest daughter's wedding last weekend.So glad I looked and felt well. It was a wonderful weekend. She had wanted to delay it till I'm fully recovered,but that could have been a bit risky, as who knows what's in store?

Please keep in touch. I'm not downhearted at all,but feel relieved that someone else is on a similar pathway.

Love Christine XXXX

[Jan76 in reply to pixinafix]

Hi there Christine ...

Yes bless you I do know what you mean xxx

They told me while they did a wash out of the pelvic area they could not be sure that they had got all the cells so hence the need to give it blast and mop up so to speak ...

each time I have had a scan its always been the abdomen , pelvic area and the chest .

Gywn is right as I have not heard of anyone as yet when its come back in the Brain ..more often in the bowel .Met a lovely lady when having chemo and hers had returned in her bowel and she is now having further treatment .

Your daughters wedding must have been a great boost to you and your family .

There is a American web site for MMMT ..with a good bit of info on it ..it was through this that I met two Sues from GB who gave me lots of support when I was first diagnosed .

Will look up the web site for you , you will have to register but thats no problem .

Why did the consultant only give you carboplatin ??? and how often are you having it ..

How are your side effects ???

I took a protein powder called Glutamine bought from the net to help prevent Neuropathy in fingers and toes ..which seemed to have worked ...My knees are not so good though .... Cannot sit for too long ....

My aches are a small price to pay as I count my blessings .

Take care xxx Love Jan xxx

[pixinafix in reply to Jan76]

Hello Jan

I'll certainly look up the american Mmt site.

It's just carboplatin every 3 weeks and only 90% of the usual dose as the drugs I take for rheumatoid arthritis have already suppressed my immune system, and the consultant was keen not to kill me off with infections! He could be right as I managed both a urine and a chest infection during the second week after dose one. As I'm used to what infections feel like before they've properly got going it was possible for me to get antibiotics at low dosage to deal with them.

I then had dreadful leg pains, gp gave me phorpain gel to rub on - it's a form of ibuprofen, and I went to the physio who I see for the arthritis. She's worth her weight in gold as she gets rid of arthritis flare-ups, and this time gave me vigorous (and painful) leg massages, plus leg stretching exercises which did the trick. Other than that, no sickness, and a bit weary. The steroids make me feel warm, but drinking about 3 litres of water a day seems to be controlling that.

I've stopped using public transport (all those germ-ridden Mancunians coughing and spluttering) and at this time of year, can sit outside at cafes.

Bit concerned about the lower dose of carboplatin, but I'm trusting their judgement.

Sounds like cinema trips and restaurants could be rather challenging for you at the moment! Very glad you managed a holiday. We Haven't had one this year as operation, treatment, moving house and wedding meant we haven't had many available dates. Yes, we moved house the week before the hysterectomy and did it with a view to just camping in new house, which we are still doing. Got the first curtains up this week, no carpets though, and all other windows curtain-less.

Life's good,in spite of the oc.

Love Christinexxx

[Jan76 in reply to pixinafix]

Morning Christine ...

You have been through the mill with the Rheuamtoid Arthritis and now this .....

I have a wonderful Aunt who has had her shoulder replaced this year and now needs a new hip as well through R A ... Do feel for you so much ....

Glad to see you are drinking plenty of water ...yes do remember being hot one minute and cold the next with the Steroids ...

I managed to stay clear of colds and coughs even when hubby had a terrible one earlier this year but I ended up with Shingles after the 2nd treatment ... due to my system being low .

Goodness you have had a busy time with moving house and the wedding .... it sounds as though at some point you could do with a break . Do hope you manage to have one but it sounds as though you have your hands full with sorting your new home out .

Take it steady now xxx

Love Jan xxx

[Hidden]

Hi Christine,

I haven't got or had a sarcoma as such,but I am in remission for OC and the ascites (fuid) that I had was tested as positive, and you do worry where the cancer is going to turn up next (or if it does) but usually there is a pattern to where it is likely to recur and as far as the brain is concerned OC tends not to go to the brain...this is why they only scan the abdomen the oncologist do keep an eye on things though...I know this doesn't stop us from worrying, it is good that your ca125 is down..I know I am not being much help..I had (and still have) the same concerns..but having had a recurrence now..I feel you would know..I send my best wishes and love x G x

[pixinafix in reply to Hidden]

Hi Gwyn

Good to hear about the remission and long may it last. When I asked about likely sites I didn't receive a satisfactory answer.

When are you regarded as being in remission?

Love Christinexx

[Hidden]

Hi Christine,

I thought it was better for you to know where it was unlikely to go, as you mentioned the brain, other cancers are likely to go to the brain but not ovarian cancer, the likely place for OC is the abdomen...you are considered in remission when your scan is clear and you are symptom free and probably your ca125 is normal (35 or under) although you ca125 could be risen without necessarily it being the cancer is back. They scan the abdomen because this is the likely place to recur best wishes love x G x

[Hidden in reply to Hidden]

I forgot to say.. a recurrence is symptoms that last longer than three weeks without a break ie. it doesn't come and go it stays...so if you have a pain one day and not the next it is not a recurrence..it does not fluctuate...I sometimes have a pain and think it Is back and then maybe the next day or few days it has gone so then I think oh it's not back..but nothing stops you thinking that..it is normal to think it is back when it isn't x G x

[pixinafix in reply to Hidden]

Hi Gwyn

Thanks for clearing that up. Basic information like that does seem hard to come by.

Long live remissions!

Love Christinexxx

[Whippit]

Dear Pixinafix

Welcome to the site nobody really wanted to join - but now you're here you'll find loads of lovely people who will have lots of ideas and information for you. It'll be a huge support.

I had the same diagnosis as you - finally confirmed in June last year after the bits were sent to histology. Rare and aggressive. Those are frightening words. However these aggressive cancers tend to respond well to Carbo-Platin which isn't too bad as it's quickly administered and has few side-effects.

Don't get bogged down by statistics. You'll really need to find your own way through this with the support of the professionals, family, friends and your online buddies here. I was told by the professionals that I'd have 'bad days' but I didn't, I was told I wouldn't be able to work again full-time but I did. I was told the cancer was likely to come back very quickly - but it hasn't. Sometimes it's not too good listening to the professionals or reading up too much.

Each one of us will have our own cancer journey and nobody can predict how it will go. There are people with incurable cancers who not only survive but go on to be Olympic Champions, write books, establish charities such as Ovacome and so on. Hold on to these thoughts and live for the moment. Laugh a lot and love a lot because you're not going to avoid crying a bit too. It's a bit of a roller-coaster but you'll have friends on this site who'll be there for you and I really hope you find that living with cancer doesn't have to be such a bad thing.

Sending you love and hugs. Hope this might help in some way. xxx love Annie

[pixinafix in reply to Whippit]

Hello Annie

Good to hear about the responsiveness of our type of oc to carboplatin, and at least we're not tethered to the drip for hours. And very good to hear it hasn't come back.

How often do you go back for check-ups, and what do they consist of? I've only been old that I'll be going back for the rest of my life, so as long as that's a long one, I'll be very happy.

The only thing that upsets me are the admin mix-ups, appointment dates not booked, mis-informed about where to go and what to do. I find I'm giving myself a talikng-to about calming down and de-stressing, as I'll get it sorted eventually.

Love and hugs to you too

Christinexxx

[Whippit in reply to pixinafix]

Dear Christine, it's good to have a buddy going through the same thing. My cancer is Grade 3 (advanced). I go back every 3 months and have a CA125 test the week before. The count was only 8 last time so I've never seen a consultant, just the oncology nurse, and she asks how I feel and palpates my abdomen to see if there are any new lumps. The average remission for my stage and type of cancer is 12 months and I've sailed through the first 9 feeling very energetic and well.

How I sympathise with you about the muddle in the NHS. It is really annoying when they forget to book appointments, forget what chemo you're having and then one day the day ward is different but nobody tells you and you can't find out where you're meant to be. The reason I had carbo-platin only was because of an admin error. There were simply no places so when I went for my first Taxol and carbo-platin - having psyched myself up and practically shaved my hAir to 3 cms -I was told I couldn't have the Taxol.

It's very irritating to be given a 9 o'clock appointment and to be seen at 12. It's also a bit stressful that everything is so chaotic and muddled from the receptionist, the phlebotomists and the oncology team. The alarm goes off constantly in the loos as patients think the alarm chord is the light switch.Why don't they put a notice outside the door to warn people? Why isn't there wi-fi for guests? Why aren't there sockets by the chemo chairs so patients can choose whether or not they want to listen to Radio Wales which blares out incessantly even though some of us might find it irritating. If I were in charge I'd be aghast at the waste of staff time and chaos. Having said that they couldn't be kinder and I've done well so I keep my thoughts to myself and I shall hate having to go back even though my life now depends on it. I visited a private oncology unit in Bath recently. It was another world.

Bell me how you're getting on and your plans. Are you planning on going back to work? What cheers you up? I'm sure you will have a. long happy life. It's not too much to ask is it? Xxx Annie

[pixinafix in reply to Whippit]

Dear Annie

No work for me as I took ill-health retirement 2 years agoat 58. Sorry, meant ago at 58, it was the arthritis. I was perperpetually tired, getting chest infections from the healthy-I-never-take -a-day-off types who then gave me bugs that my immune system couldn't cope with. My team leader sent me to occupational health, I think he thought I'd be given a talking-to, but instead they said 'you've struggled enough' and other than doing handover documents and emptying files,I never went back! It took over a year to feel well, and in spite of the oc, consistently feel healthier than ever I did for the last 3 years of work when the clouds of feeling unwell never parted, not even for a few seconds. After I'd been retired for 6 months, the clouds parted for a couple of minutes and I knew I would feel well again.

The mixture of chaos and kindness is stressful when we could do with being at a low stress level. I wonder if they realise just how awful it is when they do these mix-ups.

Are you going back to the private oncology? I paid to have one Knee replaced privately. What bliss! The chef came round to ask what he should cook for dinner as I'm veggie. The stuff in St. Mary's where I had the hysterectomy was inedible. I had lost over a stone because of the size of the tumour, but the edible food was only cheese salad or cheese and biscuits - not enough to get well on. Made up for it since.

Really sorry yours was a grade 3, but it sounds like so far everything is going extremely well for you. I'll be thinking of you

Love ChristineXXX

[Whippit in reply to pixinafix]

Hi Christine, Sounds as though you're well away from work. At 58 I guess you're the same as me and narrowly miss the state pension age cutting in at 60. It's something the government should think about as it' difficult to work with ill-health as you get older. Arthritis is horrible and so painful and depressing. it's good you had the replacement knee so hopefully now you're much more mobile.

I wasn't treated at a private hospital. I want on behalf of Ovarian Voices to collect a cheque and say a few words of thanks for their fundraising. In return they gave me lunch and showed me round theoncology ward at the hospital. It was like a 5* hotel. I've volunteered for a couple of charities and it was my first 'job'. Next month I train as a volunteer for Ovacome.

I know what you mean about unappetising hospital food but then I'm probably fussy as I love cooking. I lost a lot of weight which has now returned but at least I'm in remission and that is preferable to the state of things in the Spring of 2011.

Long may our good health last! Xx Annie

[shen]

hi

i am sorry to hear your diagnosis..

i recently joined this site... it is a great source of comfort and the knowlede these ladies have is unbeliveable... i have learned more from these ladies that i thought was possible and the support is great..

i hope and pray things improve or u

shenx

[pixinafix in reply to shen]

Hi Shen

It's certainly a good place to let off steam - the anonymity helps. At the start of all this I seemed to be plagued with frequent calls from Macmillan nurse, cancer liaison person and district nurses, all bearing tissues, which I didn't need as didn't feel particularly upset. Possibly having pre-malignant breasts and bi-lateral mastectomies 30 years ago helped prepare me, but didn't feel there was anything they could do for me. It's good to know they're in the background should I need them, but at the moment they're not for me.

Hope all goes well for you

Love Chistinexxx

[Hidden]

Hello Christine,

I was also treated for carcinosarcome (3c, grade 3) in Jan to July 2009. I'm in full remission - ca125 is 5 or 6 , and the hospital don't want to see me for a year unless I have problems. It might be rare and aggressive, but I also think that also means they don't know much about it, and it might well go completely!

I was v lucky in that my surgery removed all visible disease, and I have been careful with health, nutritiuon and fitness since. My GP actually thinks I'm 'cured' - Bless her- magic words.

Very best wishes for complete eradication of disease for you and all the others.

Isadora.

[pixinafix in reply to Hidden]

Wow! That's very impressive! It's easy to think that because they don't know much about it, everything must be bad. My ca125 is own to 11, and at surgery time everything had been removed.

It's also good to hear the word 'cured' as no-one says that much.

Long may it last

Love ChristineXXX

[Hidden]

Christine.. My type of ovarian type cancer ... primary peritoneal.. isn't a sarcoma. I was given a very gloomy prognosis when I was first diagnosed as I was Stage 3c (since then it's been confirmed I must have been 4) but I had a partial response to treatment. At first, I looked everywhere on the web, even signing into medical sites as a medic so I could get the gen I couldn't find anywhere else. Naughty I know. It's hard to find anything out. In the end, I got so depressed because all I could find was doom and gloom. Next month, I'm twelve months post my last dose of chemo and I'm feeling better than I did and have a lot more hope. If I got a diagnosis today, knowing what I know now, I wouldn't research my condition in the way that I did. It was my way of controlling my own environment in a mad sort of way I think. I should have taken the advice of my Macmillan nurse and only looked on their own site. Just my thoughts. I wish you all the best Christine. x

[pixinafix in reply to Hidden]

Hello Tina

You're quite right about the gloomy prognosis the web gives, no matter what type or stage of oc. It seems to be guess work when they give you a prediction, and there doesn't seem to be much help regarding interpreting it. But then, no-one can predict what our response will be to treatment yet. I would really like national statistics about type of oc, grade, timing of treatment (I waited 9 weeks, some are treated within a month) and the treatment given(I'm only getting carboplatin). If this information exists, I wish it could be published for us.

Keep being positive, I'm sure it helps. I 'talk' to my abdomen 3 times a day telling it how well it is,and banishing cancer cells.

Love ChristineXX

[dee61 in reply to pixinafix]

I had a chuckle when I read "I talk to my abdomen 3 times a day" as my oc is clear cell Grade 3. My tummy is so big with adhesions causing problems in that area that they put me on a low residue diet. No results yet so "talking to my ab" is next on my list,

Love Wxx

[pixinafix in reply to dee61]

Glad you had a chuckle!

We tend to mentally 'cut off' bits of us that hurt or are troublesome, so I think it helps to try to get everything integrated. It certainly worked with my feet, on which I've had a number of operations. I was so good at mentally cutting them off because they hurt that they would be really cold to touch, and would take ages to heal.

Once, a podiatrist said it would be months before an ulcer would heal, which brought me to my senses. I really concentrated on getting the ulcer to heal, and the next week it had gone. She didn't believe what she could see - a healthy foot. Telling her what I had done was no good, as she adopted the 'I won't listen because she's clearly got a screw loose' attitude. Never mind! It had worked, so I'll just keep jangling my loose screws.

Put your hands on our abomen and concentrate on healthy abdomen thoughts.

Good luck, and keep chuckling!

Love Christinexxx

[osborne1963]

Omg how glad am I to find this thread !!! I have advanced stage mmmt ovarian and really thought that I was the only woman in the whole of the Uk with this. Do any of you live near Bath ?

[Hidden in reply to osborne1963]

osborne1963

Can you tell me how you are doing?

[Willies]

I was diagnosed with ovarian carcinosarcoma 5yrs ago. I have had 2 sessions of chemo 6 and 9 chemos in each session in 1 plus yrs after surgery. I have been in remission for over 3 yrs. I am feeling great and hope to make 4 yrs this July. I want women to know that they are not a statistic and can survive this cancer. Know that survivors are out here.

Mary Anne from USA, NY State.

[Hidden in reply to Willies]

Dear Mary Anne,

I just thought I'd mention that this thread that you are commenting on is two years old and Chrisrtine ( Pixinafix) died a while ago, it is best not to comment on older threads... but check the date at the top righthand side first, if the relatives still have access to the members mail they will get notification of comments so it could be upsetting.

I have already informed the moderators of the problem of highlighting older post but nothing has been done about it.

Best wishes love x G x

[Willies in reply to Hidden]

Dear Gwynn,

Thanks for making me pay better attention to my comments on the older posts. I was not aware that I might be causing hurt to others. I am now much more careful.n

Mary

[Hidden in reply to Willies]

Dear Mary,

Please don't be offended at me warning you, (you are not the only one to do this) I am more aware of the people who have since died because I write a tribute to each one that I know about but there are some that don't lets us know that's why it is better to have a conversation on a newer post (or create one yourself ) as you can see below someone has replied to you three days ago... and so it continues... I blame the admin...

Best wishes love x G x

[Hidden in reply to Willies]

Willies,

So glad to hear that you are a survivor!! My mom was just diagnosed last week with ovarian carcinosarcoma. It has taken us all by surprise. She is a healthy 72 year old active woman. Her only symptom was the retention of fluid in her abdomen. That is what led her to try to get relief and the discovery of the disease.

Can you tell me where you received your treatment? Did you find a specialist or a hospital that has some experience with this (due tot he rare nature)? She lives in South Carolina and where there really isn't a cancer center doing break-through work. Does anyone have any in put on doctors/hospitals for me?

mweyant89

daughter of a soon to be survivor!!

[Willies in reply to Hidden]

I live in Buffalo, NY, and have been treated at Roswell Park Cancer institute. I believe that my treatment was the standard surgery by a gynecologist/oncologist followed by chemo. I have had 2rounds of chemo of 6 and 9 sessions in over a yr. I believe that the chemo is often taxol/carbo which is what I had with gemzar chosen by my doctor. I am 75 yrs old, and feel good now. Best thoughts to you and your mother.

Mary

[Hidden in reply to Hidden]

Dear myeyant,

It might be a good idea to check the date of the thread at the top right hand side because this is an old thread the person who wrote it is no longer with us (this can be upsetting) you could then chat to willies on a newer thread xx best wishes xx

[Virginia149]

I have had oc stage 3 since 1994. Had cisplatin&taxol 6 rounds, then had port put in stomach and used taxol belly washes once a week for 50 weeks. I stayed in remission for 6 yrs.. then had relapse in 2000. Been dealing with it ever since. Including an ovarian tumor wrapped around small intestine which ended with an illeostomy due to a surgeon that didnt sew me back together correctly, had a leak that resulted in the surgery to get rid of infection and the dreaded bag!

[Hidden in reply to Virginia149]

Dear Virginia,

As this is an old thread (2 yrs old) the person that wrote it is no longer with us... It would be best if you checked the date at the top on the right hand side and just reply to recent posts (as this could be upsetting) perhaps you could start your own thread even.

But welcome to our site.Best wishes xx

[Hidden]

Gemzar chemo. Morphine for pain control. I've just started this regime. The carboplatin and Ifosfamide regime didn't work.

[andyfay]

Did it spread or was it contained. That makes a difference too. I had the same diagnosis. I am doing ok. just fatigued from the chemo. But life does go on and do the best you can. Take care of yourself. that is what I am devoted to doing.

[Hidden]

Hi

I had bilateral ovarian carcinosarcoma stage 2 b, removed surgically 2015 April. Yes! That's 2 year survival and still clear, so not so hopeless after all.

Being told I had an aggressive and rare cancer has made it harder for me to forget about it and live normally. But I am starting to return back to normal life, but would like to hear from other people with this particular cancer. Fluffylady.

[Hidden in reply to Hidden]

This is an old thread and at least two of the people in the conversation have died. This point has been made twice by other people in the thread. It's upsetting for those who knew them when old posts are replied too.

The date of a post is(faintly) in the top right of the box and it's as well to check before replying.

[Hidden in reply to Hidden]

Sorry, I apologies, this was my first time on this site and thought I had written to reach out to anyone who has the same as myself, or who could help with my worry, or even give a positive story for other people with this. I did not realise I had attached to an old blog. sorry to cause upset.

Fluffylady

[Hidden in reply to Hidden]

Not to worry - it's easy to do and the site itself doesn't help. Try starting a new post? xx