Any one with Ovarian carcinosarcoma

[Jan76]

[newlife]

Hi

i have just been diagnosed with this in the past week. I will be starting chemo in 2 weeks. i would love to speak with you about this just to share experiences and also to hear what has worked for u what treatment u are having, and all the other stuff. i have looked in a number of place but not found anyone with same diagnosis

[Jan76]

Dear newlife ..

Hello there .... and a warm welcome to Ovacome ..such a shame to meet like this ..but its a great site and the ladies on here a wonderful ...

So very sorry to hear your news ..

Ovarian carcinoscarcoma is I am afraid very rare and agressive and there is not a lot of info on the net ..but I did find an American web site that has info and is a forum too .

It was from there I met two ladies here in the uk who have had it in the Uterus are have had their chemo and are about a year ahead of me .

Their help has been wonderful in telling me what to expect of the chemo ect ect .

My symptoms last year were of needing to wee lots more than normal ..it got to every ten mins and a bloated tum ..that was it !

The weeing I put down to my bladder being prolasped in 2010 and me not doing my pelvic floors and the bloated tum ...digestive probs which I do from time to time ....

Saw doc at the end of Oct and she refered me for a scan as she said my womb was bulky and I had a swelling on my right side ...

but within two week I was growing bigger and it was hard to put my boots on and bend down .

Went back on 14th of Nov ..still no scan appt yet .... doc had a feel of tum again and said hmm you are getting bigger , decided to try and get me to see a consultant while waiting for the scan ..but nature took hold ..not sure what she stirred up but had pains later on in the tum that went of the scale ..end up in hosp that evening on the gynea ward ..the next moring they did an ultra sound ..found the large Ovarian mass , It was pushing my womb over hence the swelling . The next day my birthday ... they did a CT scan and decided need to have a full hysterectomy as it was a complex Ovarian mass .

They could see it 'hard matter' in it .... my CA125 blood test came back with in its normal range .

My research on the net when I got home from hosp told me that in the early stages of OC it does not always show a raised level .

My discharge letter when I came home said proberable outcome Ovarian cancer stage 1 ..

My op was fixed for dec 23rd ..Xmas in hosp

Results on the 9th of Jan ..they were spot on but ..during my op they told me the mass leaked , I had a capsular rupture and some of the fluid leaked into my body cavity and while they did a wash of the area they could nop be sure that some of the cells did not escape ...

Then came the shock that it was carcinoscaoma or its other name Malignant Mixed Mullerian Tumor and it was very rare and aggressive .

A lot to take in all in one go ..

They had already made me an appt to see the oncologist on the 11th of Jan .

He told us that I would be having Carboplatin and Paclitaxel chemotheraphy and it would be every three weeks .

I started on the 3rd of Feb and have tried to look after my self and listened to advice about drinking LOTS of water each day .

I drink at least two Lts a day , I fill a bottle up and then drink it through out the day .

You need to flush the chemo through your kidneys and liver !

I always ate a good diet lots of salad, veg, peppers , fruit ect ect .

A good diet is important , I havn't suffered any sickenss , they give you anti sickness in a pre med beofre your chemo with a steriod and a anti histamine ..as it can make you itch ...

I have anti sickness tabs to take if I need but have not had many and mainly for indigestion and this time round heartburn .

I take steriods for three days after the chemo but always take them at breakfast and lunch not in the evening as they will keep you awake !

I did my research into the possible problems of neuropathy .tingly hand and feet ..as the chemo can damage the nerves .

I came up with a protein powder called Glutamine ..ask my consultant if it was ok to take he said yes ..so I did and to date so far have been ok .....

I found it on a british web site so easy to get it .

You mix it with water or fruit juice .

My friend had breast cancer two years back had chemo and radiation and suffered nerve damage to her toes ......

Walking is very good for the aches and pains in the limbs that can follow chemo .

I try to potter in the morning and rest in the afternoon .

My first week after the chemo my taste buds are all over the place , eating fish or jacket pots ,soup if I don't feel like too much , then it picks up again .

They told me I would lose my hair with the Paclitaxel and even said about how long it would take and they were right ...two to two and half weeks and it was on the move ... I had it cut short before my op as knew it would be hard to manage it long after my op and now am glad I did ..as going from short to nothing was a lot easier .

It came out a bit more each day and somehow that was easier to cope with so when it was all gone I was glad as it was going everywhere !

I was unlucky to get shingles after my 2nd treatment so was unable to get to the hairdressers to have it shaved so my hubby did it for me .

Shingles ..due to the fact that I had chicken pox as a child and it lies dormant in the spine ..chemo can lower your immune system and it did mine so it woke the virus up as shingles .... Tough time but got through it .....

I have carried on taking my vits ..just ran it passed the consultant and he was ok for me to take them .

I take Zinc , garlic , oil of evening primrose and have added vit c and L- Lysine to boast the system against shingles again ....

I also take the two Lts of water with me when I have my chemo and drink as much as I can then too ...

I was fitted for a wig but have not worn it as would rather wear hats or scarfs .

As I live in Norwich in Norfolk I am being treated at the Norfolk and Norwich hosp which has the Big C centre right close by the cancer unit .

The ladies there have been wonderful !

They have reflexology or massage , relaxation classes a whole host of various things on offer .

Where abouts are you ?????

If you would like to mail me my mail is [e-mail]

Key things ..be kind to your self ... stay positve ..that so important .. try and have things to aim for ..

Hope some of this has been a help xxx

Take good care

Love Janet xx

[Jan76]

Hi there again ...

Forgot to ask you what stage they have diagnosed you at ??

To find the American web site I mention the best way is to go put into Google mmmt and its the 5th one down ... groups.yahoo.com/grouputerinemmmt/

You will have to register but thats not a problem .

Go into links and see steves group ..lots of info there .

Love Janet xx

[pixinafix]

Hello

Quite a while since you posted this,but I too am ovarian carcinosarcoma 1c.What a club to join! Diagnosed finally June 12 and just had 3rd dose of carboplatinalone.

How have you responded to treatment?

I'm seeing onc this afternoon as I suddenly got fatter a couple of weeks ago. Here's hoping I'm fat (that would be a first) and not full of fluid.

Love Christinex

[Jan76]

Hi there Christine ,

Yes you are right what a club to join but so glad I found it , I use thias one more than the american site for MMMT ..but having said that its has a lot of info on it and I 'met ' two lovely ladies from it who are here in the UK and have had MMMT in the uterus .One at stage 1a and one at stage 4b .

Christine I responded very well to the chemo , I had both the carbo and the taxol every three weeks .

My kness and feet ache a fair bit but no probs with tingly toes and fingers as took a protein powder call Glutamine for that .

My scan was normal in August and have my first blood test and check up next week .

I do hope you got on ok with the onc and theres no fluid .

My hair is growing well now , quite sureal to watch it grow ...

I stayed pretty wel lthrough out apart from shingles which was terrible after the 2nd treatment ...

Let me know how you got on .

Love Janet xxx