Newcomer to Forum - My wife has been diagnosed with Ovarian Carcinosarcoma

[pamnani]

Hi,

I am a worried husband and don't know what to expect or do next apart from continue to help my wife get through this.

I came across this forum when searching for help on Google and thought to sign up to this on behalf of my wife (who is presently in hospital recovering from an infection from the surgery she had 3 weeks ago). She has been diagnosed with Ovarian Carcinosarcoma (stage III, I think). Her surgery consisted of a radical hysterectomy and debulking. We have an appointment with the chemo clinic in Kent tomorrow and I thought I could get some help, advice on what to expect, what to ask the clinicians, and any other advice you could give us.

I am hoping that once my wife recovers, she will be able to take part in this forum too.

I appreciate any help, advice this forum can offer.

with many thanks in advance,

a very concerned husband.

[Kekelou40]

Hello P welcome to the forum!! I have only just been diagnosed as having a mass on my ovary but blood tests came back on Friday showing no signs of cancer, however it still could be so I will be having surgery in 3 moths, but may well push it for sooner as I am very anxious! I can't offer advice on chemo etc but there are lots of women on here who can! All I can say is hold her hand make her laugh and be by her side, this has had a huge impact on my boyfriend and we are only at the start and I don't know what I would do without him!! There is no greater power than love, talk to your friends and family, don't bottle it let it out!!oh and having a good box on the bag works wonders loooool look after yourself too!

Hope yor wife is comfortable and settled xxxxx

[Lyndy]

Hello and welcome!

You and your wife can ask any questions here.. this group has a breadth of knowledge and experience to call on and of course lots of support because we all know how scary this journey can be at times.

Do you know if your wife is to have chemo? Once she knows what she is having treatment wise you will be able to get top tips from many of us ladies who have been through it.. Although everyone is different and many including myself came through chemo in better style than we anticipated!

This is also a good place to air your worries- we've all had them and it's good to know that someone else has experienced the self same thing.

All the best to you and your wife, and try to stay clear of Mr Google if you can.. he doesn't always know what he's talking about.

Lyndall

[pamnani in reply to Lyndy]

Hi Lyndall,

thanks for your encouragement. My wife and I went to the chemo clinic to discuss next steps, and the consultant has said that the best treatment for ovarian carcinosarcoma is Carboplatin and Paclitaxol. She will start this once she is fully recovered from the surgery and infection. My worry is that she is so sensitive to medication (antibiotics are giving her diaorhea and nausea, so she loses weight, and this causes a vicious circle of events), that the strong side effects of the chemo will cause her serious harm/discomfort. They have stated the following side effects that could occur: Serious infection; allergic reaction; nausea & vomiting; tiredness; kidney damage; leakage at injection site; constipation or diarrhoea; hearing loss ot tinnitus; mouth ulcers/sore mouth; sore eyes; altered taste; nail and/or skin changes; redness of hands/feet; rash; muscle and joint pains; blood clots; and hair loss. I am concerned that if these side effects accumulate, my wife could be in some serious discomfort and that worries me a lot.

Anybody had experience with any of these side effects and what strategies they used to alleviate them?

Tnx.

[Katmal-UK]

Hi. I am sorry you have had to join this forum but welcome to somewhere that you can (both your wife and yourself) come to for advice and support. I was diagnosed with stage 3 OC 9 years ago (today in fact) and as you can see I am still here, working full time and currently NED (no evidence of disease). The main thing I would advise is stay away from googling about ovarian cancer with regards to prognosis. The internet can't tell you what your wife's prognosis will be and is full of scary statistics. Your wife is not a statistic she is an individual.

Is there any history of OC or breast cancer in your wife's family? Is so it might be worth mentioning genetic testing for the BRAC 1 or BRAC2 gene. I have BRAC2 gene and am currently trialling a parp inhibitor. It may be worth asking about clinical trials either to run alongside the standard chemo or as a maintenance once your wife has finished chemo? The trials are not as daunting as they sound. This is my third trial and each time I have worked full time whilst undergoing the trial. Do tell your wife to be kind to herself, listen to her body as to what she can and cant do, be selfish at times to, i.e. leave the washing up for you etc even if she feels she should be up and doing it! Not that I am suggesting for one moment that you'd let her anyway, if you are on here looking for advice you are obviously a caring husband. Be kind to yourself as well. It can be a tough journey for loved ones as well. I would imagine that they'll start your wife on chemo within a couple of weeks and it's pretty usual for there to be hair loss which as you can imagine for a woman can be devastating but you can seek advise here about that if it happens. You will always plenty of support and advise and also this is a place to let off steam, after all we will know exactly how your wife is feeling and to a degree you as well having watched our loved ones go through this with us. I wish your wife well. Take care, Kathy xx P.S> sending you both a big hug (you'll usually find we are here even if you just need a virtual hug )xx

[pamnani]

Hi all,

I am touched to the fast speed in which you replied to my SOS!

Thank you. I was reading these out to my wife just now in the hospital (I have just taken her some home cooking to eat). We are so touched and emboldened by what you have all said.

We will find out tomorrow what chemo she will have.

My wife is taking this in her stride and is concentrating in getting herself strong again.

I have also broken the news to our very courageous teenage daughter last night and have informed her 6th form head.

I will certainly let you know what chemo is advised for her tomorrow.

Thank you again for being so helpful and supportive.

[January-2016-UK]

Hello, welcome to both you and your wife to our forum. I too have Ovarian Carcinosarcoma, stage IIIC. I was diagnosed in January this year, although it was known I had ovarian cancer in November but not exactly what kind until after a biopsy. I had four cycles of chemo, before having the op, followed by two more cycles. My chemo was carbo/ taxol (paclitaxel and carboplatin) which most of us seem to have, regardless of the actual type of ovarian cancer, unless caught at a very early stage.

Once you have a date set for the chemo, we have lots of advice to offer for the five or so hours your wife will be on the chemo ward. The wards can be cold and can be noisy (my best recommendation is ear or headphones). Plus good info on wigs if your wife is to lose her hair and some of our group have excellent information on the make-up front.

It's almost impossible to stay away from Dr Google but do remember that most of the stats you read are at least five years out of date, if not more.

All the best to you both and for your teenage daughter. She must be so very worried. Helen

[Caroles1]

Hi Pamnani,

Agree with what the ladies have said,most of us have had paglitaxel and carboplatin,so come back to us when you know and you will get loads of advice.

We are all still here and although it's scary,there is life after the c word,come back to us and hopefully we can help

Carole

[Hidden]

Hi Pamnani

I cannot add any more to what's been posted already. There is a wealth of knowledge on this forum and the wonderful people here will be with you both all the way. I was diagnosed 6 years ago with stage 4 and although I have just had a recurrence am determined to have another long remission. Wishing you all the best. Love and hugs Chris xx

[Steghart]

Hi Pamnani, I echo the above and have had two teenagers in Sixth form on my OC journey so fully understand that side of it, both did phenomenally well by the way and one is now working and the other at the Uni of her choice having exceeded expectations. My children were my biggest concern but they have been amazing with the right support from school Uni and GP. Good luck

Claire xxx

[Rosewall101]

Dear concerned husband, its really great that you have joined the forum as I've seen a few posts from husbands and partners. I hope your wife feels strong enough to join our group too. Sometimes my posts have been a real cry from the heart and the ladies on this site have provided much practical and emotional support.

Everyone's journey is unique, as is our response to chemo but if your wife is very sensitive to drugs then she sounds a little like me!

I found the carboplatin and taxol very tough. Because I'm very sensitive to drugs and because I've had chemo before that whiped out my white and red blood cells, I had a reduced amount. It's worth discussing this with the oncologist. They can, safely reduce the dosage if your wife finds the chemo too hard.

Also, there are many drugs to counter the side effects. For nausea I can recommend ondansetron along side domperidone. The ondansetron is the really good, but an expensive one so please ask for this. It meant that I felt very nauseous but it stopped me being sick. There are also a large number of Pain meds.

It's a bit of a wait and see. Some ladies escape With very few side effects. But everyone tends to have to cope with fatigue and tiredness. Your wife and you need to see how she copes and then make sure you tell the oncologist. There is help.

Best wishes

T. X

[pamnani]

Hi all,

its me again. You have all been so wonderful in giving me your support. I am printing all your responses out and putting them in a file to show my wife so when she is strong enough she can read them.

My wife was admitted to hospital again after having what doctors think is an infection and she was given large doses of antibiotics via IV ( she is very sensitive to these as they make her weak and lose appetite). They took her off these 2 days ago.

She had a complete surgery and debulking 3 weeks ago. She was recovering well until a week after being discharged. They said last week that she had developed a blood clot in her abdomen as a result of the anti-clotting injections she had to and still needs to take, and hence the administration of antibiotics. I noticed today that her abdomen started to get bigger again. I am worried that any residual cancer cells from the surgery a few weeks ago (after removal of the carcinosarcoma tumour) may have regrown.

Is it possible for these residual cancer cells to grow so fast into another tumour before her first chemo?

They did do a CT scan and we will be told the results tomorrow. Every day seems to be a roller-coaster ride. Just when I thought my wife was getting better from the op, things went pear shaped!. I also worry how she will cope with the chemo which has not begun yet. I took her some dinner this evening and she ate some which made me feel so happy. But then the nurses started her on a new course of antibiotics by IV route, which again worried her and me (because her digestive system responds badly to them), just as she was starting to get better!.

This seems to be a long nightmare, and watching my wife get so weak makes me feel so helpless.