Ovarian carcinosarcoma

[Jan76]

Hello there ,

I am 55 years old , had a total hysterectomy on Dec23rd 2011 as had a large complex Ovarian mass .results on Jan 9th have shown that I have stage 1c ovarian cancer .Surgeon says its a carcinosarcoma very rare form of cancer and rather aggressive ..

The Ovarian mass leaked during the op and while they did a wash of the area they cannot be sure that some of the cells did not escape ..

Will start carbo /taxol chemo on the 3rd of Feb .

Just a long shot but just maybe someone out there has the same ..worth a try ..

[Jan76]

Hi there ,

Thank you so much for your reply , I have found an American web site which is very good and has brought forth three mails from ladies here in the UK all have the same but had it in the uterine and are ahead of me in having had their chemo and are doing ok so far ....

the web site is groups.yahoo.com/group/uter...

All the ladies I have heard from are older than me at 60 /61 and 69

How did you cope with the chemo ??? and did you have any problems with neuropathy during and after the treatment ??

You are the first person that I have had contact with that has the same as me ...Ovarian carcinosarcoma .So very pleased to have made contact with you .

Silly question time now ..but how did you know it had returned or was it seen on the CT scan ????

If you have any other tips re managing chemo etc etc I would be most grateful thanks .

Many thanks Janet .

[starlight]

Hello Janet,

My first cycle of chemo was administered in a side room and the nurse explained each step very clearly. And it went okay, at first I was a little bit overwhelmed but as the nurse chatted to me I relaxed. It took over six hours. Over the next few days I began to feel the effects. Its not easy, but will the steroids and anti sickness tablets doing there job I managed to cope. I wrote down when I'd taken each tablet so that I did not get confused. As I did notice that the chemo did make me a bit forgetful. Well I blame the chemo [ not my age. lol which was 56.]

The first week of my first cycle I could not eat hot food, or drink tea or coffee. In fact I only ate cherry tomatoes and grapes. Each day I made myself drink at least two pints of water. As the second week merged into the third my energy levels increased. And my appetite more than found itself in the third week. I could of won a gold medal eating for England. You will find that each cycle of chemo affects your taste buds differently. With the five other cycles I could drink and eat hot food.

The second cycle of chemo was out in the ward and there I could talk to other people. Which I found rewarding. You will meet people who can pass on information and tips on how to cope. And bring a little lightheartedness into the situation. Often someone would make a comment that had us in stitches. So I found that It's best to wear a tanner lady pad. lol Because I found it harder to control my bladder what with the chemo and drip.

I am not making light of the chemo it can be a bugger. I did have a slight reaction to the second treatment. Which they stopped then restarted at a slower rate. It took four hours instead of three.I had my later cycles the same way. My body coped with the slower rate and they gave me extra steroids.So many infact that after one cycle the next day I woke up like a woman possessed. I hoovered and did all my housework and washing. Until I hit a brick wall and the effect of the steroids waned.

Joking aside I found the best way to deal with the chemo was to listen to your body. To sleep when tired and eat and drink what you fancy. There is a rhythm to the three week cycle. First week mostly tired with aches and odd feelings. I managed to sleep well most nights, as I took the steroids early in the day so that I was not taking the last dose late at night. If I could not sleep I'd get up and make a cuppa. Watched a comedy on Gold then went to bed knowing that tomorrow would be a little better. Sometimes I would watch a sad film. Just as the laughter from watching old TV comedies released a good pick you up. Sad films allowed me to acknowledge my own sadness and express it. If that makes sense!

Sometimes in the first week I 'd feel like I was spiralling into myself. Or watching from the sideline as all this palaver was happening to someone else.

The second week was better went for walks. Friend visited. Third week felt almost human. lol

I did get slight tingling in my feet and fingers but was lucky as it would stop. I still every so often get the same feeling.

The recurrence was picked up on a ct scan. The Oncologist looked at my blood test and asked if there was any problem and how I felt. I said that I'd an uncomfortable feeling at the top of my leg and in the groin. So was sent for a ct scan.

My info on the chemo is just how it affected me. As everyone is different. And there are many on the board who can help you with any problem. Just ask and I'm sure that someone will step forward to help.

Take care, starlight.

[Jan76 in reply to starlight]

Thank you so much for your reply , the tip about writting down when you have taken tablets is a very good one .

I am already writting out birthday cards for Feb ..in case I forget or feel to poorly to do them ..have loads in March ...

Sometimes when I think back to the 9th when I got my results and they told us it was cancer stage 1c ..it felt oddly like he could have been telling me anything ..guess its because one cannot see the cancer .

We did see pictures of the Ovarian mass before my op .

Its like when you cut your self or burn your self you can see it and feel it and watch it heal , but this is different ..I cannot see it or feel it , but want to battle against something I cannot see if ..if that makes any kind of sense ! !

How do you battle against something you cannot see ???? am I making sense here ..

Am very positive and have lots and lots of support from family and friends .

Got hold of the consultants secretary on Monday and she had a word with him on the subject of Glutamine in connection with the neuropathy and he is ok with it ..so have some on order .

Had my pre chemo scan and blood test on Monday , so all ready now for Friday .

I see it as a Journey ..long way to go but will get there .

Had one in 2003 when I had a rare blood clot on the Brain ..took the hospital 4 months to work out what was wrong .

Then after they had treated it Iwas still having problems ..had all sorts of nasty tests ..Sought help from the neuro hospital in London , they said I was having post traumatic migraines due to the clot and bleed I had had ...

Still have probs with the head now but not as bad as it was .

I count my blessing ..

Thanks Starlight xxx

Janet xx