Hi ladies

I just want to wish you all a Happy and as Healthy a New Year as possible - bring on 2012.

Its good to drop in and see what others are up to - scan and more treatment (fingers crossed!) in January for me.

Best wishes

Sue x

Hello everybody, may I join you and introduce myself?  I opened a new thread on this subject the other day in the "introduce yourself" section, but I really wanted to get onto this site.  I  am 67 yo and live in Essex, UK and have recently been diagnosed as having tumours on both ovaries, plus some areas on the omentum and outer bowel.  However, my hospital MDT  wants to ascertain whether my ovaries are the primary site or secondary to breast ca I had 15 years ago before planning my treatment, so I've just had a biopsy and await results on 22nd Feb.  I found your site about a month ago and was both heartened by all your posts, and at the same time scared - not of the treatment particularly but the outcome.  Some days I feel that I won't get through this, other days I think "No, you won't get me, you (expletive deleted!)"

The last post on your site was 28th Dec, I have been checking, so I hope you are all getting along OK

Best wishes, Hazel. X

Hi Eileen,

I am on Irinotecan and Avastin every 3 weeks,

T xx

Oh Hazel,

That sounds so familiar what you have said. I remember actually knowing I had a 6cm tumour in my ovarie but because I thought I had something wrong with my bowel and it was the bowel specialist who found it I had then to be transferred to gynecology for more tests, then they sent me to another hospital for a biopsy as it was in a very funny place, very close to the bowel. This was early January 2010 and I wasn't diagnosed officially until March 10th. It is the waiting that is very very hard.

Once you know what you are dealing with then it becomes easier. I think we all feel the same about that. ( it's the not knowing )  You feel like the tumour is taking over your body.

Keep coming on the site and let us know how you are feeling as we are a very close friendly group.....

Love to you Dot hope your keeping well.Hi to Sharon, Jackie, Mary, and everyone else.

Love as always Eileen xxxx

Hi Tony,

I have not heard of that one. I hope you manage to get through it.. I am finding it tough going and have only had 5 cycles but my veins are so poor now that I dread the canula going in and they always have about 3 attempts, so I am like a pin cushion.

xxxxxxxx Eileen

Hi there,

I am now on my second lot. The first lot have me Irinotecan for 17 and Avastin for 14 sessions...It was quite a lot for my poor little body to take so I had to have a break for 3 months....and now on Number 2...A bit of a pain as it didn't give me this much trouble the first set so muct still be in my system.

Oh well we will see how it goes and yes I know all about the pin cushion scenario!!

Much Love

Tony xxxxx

Thanks, Eileen.  Our circumstances seem very similar - I too thought it was a bowel prob until a colonoscopy proved otherwise, and gastroenterology consultant suggested something on ovary was pressing on bowel causing the pain (he could feel something there which my GP had dismissed as "probably muscle").  After MRI & CT  arranged by ge consultant confirmed cancer, was transferred to gynae for more tests, and now I may be transferred again to breast clinic if biopsy shows that to be primary site.  I am praying that won't happen, or if it does they"ll get move on - it's been 5 months since all this started.

Love Hazel. x

Hi Hazel,

I was thinking last night I didn't start my treatment until the 13th April and was worried sick that by the time they had started it that it would have spread everywhere.  My Gp was treating me for irritable bowel for weeks until my friend who is a nurse got me in to the bowel clinic and then everything was like a roller coaster. I didn't have pain just couldn't stop going to the loo. The same thing is happening again as this cystic mass is pressing on the bowel so I am not actually going properly just awful bits coming out. I told my Dr and he sent me for a scan which showed that my bowel has stools in it. I have tried to tell him that it's because the bowel is distorted but they don't listen. I have been like this for 7 weeks now but get the scan results on Thursday. I just wish they would listen to us when we tell them things aren't right.

Anyway enough waffling from me. I hope everything will be alright for you and have everything crossed for you..

Love Eileen xxxx

Oh Eileen, you poor girl, you have been through it!  I'll be keeping everything crossed for you as well, and hope they do something as a result of your scan.  Don't hear you moan about your own probs much, you always seem to be reassuring other people, so if you want a good waffle I'm here any time!

Incidentally, I was wondering why your username is "Redlizzie" - now I understand why "red" from your reply to Laura, but why "lizzie"?  (Ignore me if I'm being too nosey!)

Love, Hazel x

Ha Ha Hazel,,,,

My partner would disagree with you on that moaning thing.... I never stop ....

The red is because I support Manchester United and yeas I had red hair... The Lizzie is funny really. I used to work with a girl called Diane a few years ago and we got on so well ( still do actually ) we are always laughing and one day in work we were talking about Jim McDonald who was in Coronation Street. He use to always say to his wife Liz ( In a northern Ireland  accent ) Catch yourself on now Elizabeth. Your probably thinking I am mad as anything. We starting saying it to each other in the accent and it stuck I call her Liz, all her kids call me Liz and people think we are crazy... Life is for laughing and not taking yourself too serious I think.

Love Eileen xxxxx

Ps ask away xxxxxx

Ah well, that's what partners are for, to have their ears bent!

Brilliant, you and your mate remind me of when I was at work and we used to have a good giggle most if the day!  Daft but happy!

Hazel x

Hi  Ladies hope your all keeping well avnt been on here for a while.a warm welcome to Haze.

this site is the best ever! always here to help and make you feel at ease.im a bit down at the

minute so im gonna have a moan!.had my last check up nov. everything was ok went yesterday

and my ca 125 is on the rise again so im waiting to have ct scan and see wots going on then what?

can anyone enlighten me.just got my hair to a decent length too! anyway enough of me moanin!

take care all BIG HUGS [julygirl 58] sharon xxxxxx

Hi  Ladies hope your all keeping well avnt been on here for a while.a warm welcome to Haze.

this site is the best ever! always here to help and make you feel at ease.im a bit down at the

minute so im gonna have a moan!.had my last check up nov. everything was ok went yesterday

and my ca 125 is on the rise again so im waiting to have ct scan and see wots going on then what?

can anyone enlighten me.just got my hair to a decent length too! anyway enough of me moanin!

take care all BIG HUGS [julygirl 58] sharon xxxxxx

Hi Sharon,

Sorry to hear your CA125 is up again did they say what it was up to ?

It's the dreaded scan results I know just how scared I am when I go for mine. I don't really chat to people at my hospital as it's like a cattle market but nobody ever looks scared ( I suppose we all cover it up well ) So you have to wait for the appointment then prob another week for results.  They way I look at it though Sharon is they are on the ball with the checking, so if it has come back again it's early stages that can be hopefully zapped with more chemo..

My chemo hasn't worked so I start another more aggressive one on the 1st March.  I am worried that if this doesn't work then it is not good, but for now I live in hope and carry on laughing....

Keep coming on to have as much moaning as you want to.

Love always Eileen xxxxx

Hi Eileen, thanks for cheering me up a little bit anyway!, when i had my check up in nov

it was 17 now its 86 i feel fine no aches or pains anyehere.im the same i hate going for

ct scans because im scared of the results this bloody disease! no doubt the scan will

be in a couple of weeks il keep you posted.

lots of love sharon xxxxxxxx

Hi again Sharon,

Your count is low really as mine never went that low. When it came back in July it was  over 100 and then got to 200 and with the 5 chemo's I have just had it hasn't gone down. I wouldn't worry too much about it ( easier said I know ) but I am sure it won't be as bad as you think. Keep those posotive thoughts.

xxxxxxxxxxxxxxxxxx

Hi Sharon, sorry to hear that your count has gone up but as Eileen says they are on the ball and hopefully are just being careful, I think we all have that dread when we go for our scans, I tell myself that all is good and stick with the positive approach until they tell me anything different. It works for me. If you remember I had a bad diagnosis and the chemo seemed to sort it out, so chin up hugggggggggs.

It is hard trying to deal with this disease and my prayers are always with you all.

Dot xxxx

Hello All,

It does feel like everyone is battling again. Thsat seems to be the way on here that one week it is no news then the following week all or some results are in which mean more treatment etc. I know mine is Bowel and not Ovarian cancer but I just ever so occasionally like to show a small bit of support as this forum does so much good and helps me on my way sometimes.

Much love to all you lovely ladies...

Tony xxxx

Hi Dot Eileen, thanks for picking me up a little what would i do without you! its just thats ct scans

scare the life out of me its the results i hate.sitting in that waiting room thinking wish they would

just hurry up and call my name out. then when they do my stomachs in my mouth! think id be used

to it by now. love to everyone and take care. sharon xxxxx

Hello Sharon, thanks for your welcome.  I agree, it's a great site, always someone there to share problems with and lend a sympathetic ear.  So sorry you are having more problems yourself, but fingers crossed for your CT and results.  I am only at the beginning of this "journey" (I hate that word, too overused on TV shows!) but I can imagine how you must be feeling at the moment after a few months' respite.  I am getting a bit jittery myself as I have my first appointment with my oncologist on Wed to find out whether I will still be with the gynae team and can have some treatment arranged or shunted over to the breast team if my biopsy shows ovaries secondary to breast cancer of 15 years ago, which I suppose will mean MORE waiting and tests!  I am so tired of pain and WAITING!

Thinking of you, and all the other ladies - seems to have been a bit of a week for everyone.

Love Hazel xxx

Hi Everyone,

I haven't been on here for quite a while, Mary has been doing so well for the past six months I just wanted to put the whole cancer thing behind us (I hope that doesn't sound selfish).

Well, unfortunately for Mary too it's back! She was in hospital for a week at the start of Jan with a serious kidney infection, turned out to be e-coli, and she hasn't been right since. We bought her oncology outpatient appointment forward to be on the safe side, they organised a CT scan which revealed a tumour pressing against her kidney, which was likely the cause of her infection.

So it's more chemo unfortunately. On the postive side the oncology team are very optomistic that she will respond well, as she did last time. She is not having Taxol this time because she still has neuropathy in her toes, so they will give her Gem/Carbo which means she will not lose her hair, and hopefully no surgery needed. Treatment starts on 1st March.

Obviously a big knock back for us, but of course a lot of you know exactly what that is like. The team seem so relaxed about it all, doesn't seem to be any urgency to start her treatment.

This tumour has possibly been there for a while, the hospital have not made regular CA125 checks, her appointments have just been a physical examination and questions about any symptoms. The rationelle behind this approach is that they have done big trials between two sets of women, measuring quality vs quantity of life and found that there is no advantage to prescribe treatment based on CA125 increases alone, but rather to wait until symptoms arise. The two sets of women had similar quantity of life, but those who were treated early sufferred a diminished quality of life due to chemo side effects.

I just wondered if your oncology teams followed this ideaology?

My best wishes to you all, I hope things go well for you.

John

Hi John  Mary,

It is so nice to have you back with us, I know what you mean about staying off the site and I don't think your selfish. You just want to try and live a normal life for as long as you can without the c word being in it. Anyway glad Mary got 6 months but sorry it is back again. It's funny because I managed 6 months and I to was on gem/carbo. Mine came back in the pelvis and then wrapped itself around the veins in my groin. as well. I also have a cystic mass that is growing. I had 5 gem/carbo but have not been feeling right in the bowel area. I had my scan results on Thursday and it's not working for me so I too start another chemo on the 1st March. I don't know which one I am going on as my Dr was Chinese and I couldn't really understand him. I will try to find out this week though. I will have to stay in overnight for mine and also take tablets as well.

I am not convinced about the CA125 tests as mine was 200 back in July and still is, so although the chemo hasn't worked I thought that it would have shot up. When I was diagnosed 2 years ago it was 3000. The gem/carbo is ok as well, you have a 1 hour bag and a half hour bag as well, then the 2nd week a half hour bag then a free week. Well that's the way they did it for me.

On another note ladies I received a lovely e-mail from Jackie and she is still having work done on the house. She hasn't got her broadband up and running yet but she said to say hi to everyone and will be back on site soon. Her CA125 has gone up as well so she recons more chemo for her ..... We all seem to start at the same time....

Well John & Mary keep smiling and all my love is with you both.

Love as always Eileen xxxxxx

Hi Hazel, hope everything goes well on wed il ave everything crossed for you. im waiting for app for ct scan.

like i said dont mind the scan its the results i panic about!. keep in touch and let us know how you get on

were always here. take care x

Hi John, Mary nice to hear from you its been a while for me too!

sorry to here marys news hope shes ok. well ive had 8 months without

chemo at my check up the other day found out that my ca125 is up

again must be the month for it seems a few of us are on the rise!.

im waiting to go for a ct scan to see whats going on. maybe more chemo

for me too. love to you and mary take care sharon xx