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 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

wow the page loaded!!! have managed to view your posts but not respond as Internet worse than dial up at the mo!

Welcome to the 2 new ladies, sorry you are in the same boat but glad u found us.

Nice to hear from our 2 men! sorry to hear the chemo is knocking you Tony and its a shame Mary didn't get longer, I only got 6 months from my first treatment but have had 14 months from the 'inferior' second! my onc also does not measure ca125 due to the study you mention, I was a tad fazed by it to start with but am now glad he does it that way, as the ca125 can rise for many reasons and he now recognises that my skin and/or muscles problems are my only cancer symptoms, its a system which works well for me though now he tries to jump in too soon lol

Well it looks like we are all off down the same road again except Dot (you keep hanging in there girl!) my onc wanted to start when I saw him in Jan but I told him I wouldn't survive it till the work was finished, don't think he believed me so had to make an appointment for 6 weeks which is the 4th March, it has managed to put a bomb up the builders ***** which is helpful lol looks like everything but the painting will be finished this week and I may then feel less stressed by it all, at least that's what I hope!!!! have found it far more difficult than be diagnosed with cancer - how stupid is that???? Am hoping to do as well with this bout of chemo as last time, 14 months was far more acceptable than 6 lol

am looking to change broadband providers which will hopefully improve my internet service and then I'll be back with you on a more regular basis but fear not you are always in my thoughts and i do usually manage to read the messages even if I can't load the reply page!.

Love to all

Jackie

xxx

Jackie,

It has so brightened up my day to see your entry appear

BT seem to be a good Internet provider so am hoping they are not already supplying you.

Speak soon, with much love

Tony xxxx

Thanks Sharon, will keep you posted.  Thinking of you.

Love Hazel xxx

Thank you for your welcome, Jackie.  Hope all goes well with your new chemo, and with the final bits of decorating!

Love Hazel xxx

Thank you all for your warm welcome back, it means a lot. And a warm welcome to the new ladies who have joined us on the forum.

Yes it does seem that we are somehow in sync a little bit at the moment. Not the best of news for everyone but on the positive side maybe we can be here more for each other.

This is a good forum for me, as I can discuss things here that I cannot really with friends and family, as I want to keep things as normal as possible with them, too much fuss does not help at all.

I hate seeing Mary like this, she hasn't felt right for nearly two months now. First time around she had no symptoms at all, apart from the ovarian cyst that was making her feel uncomfortable. I hope that the chemo will make her feel better and not worse.

Is this still ovarian cancer? how can it be? she has no ovaries!! Maybe it is because that's where it started.

Best wishes,

John

Thank you all for your warm welcome back, it means a lot. And a warm welcome to the new ladies who have joined us on the forum.

Yes it does seem that we are somehow in sync a little bit at the moment. Not the best of news for everyone but on the positive side maybe we can be here more for each other.

This is a good forum for me, as I can discuss things here that I cannot really with friends and family, as I want to keep things as normal as possible with them, too much fuss does not help at all.

I hate seeing Mary like this, she hasn't felt right for nearly two months now. First time around she had no symptoms at all, apart from the ovarian cyst that was making her feel uncomfortable. I hope that the chemo will make her feel better and not worse.

Is this still ovarian cancer? how can it be? she has no ovaries!! Maybe it is because that's where it started.

Best wishes,

John

Hello, John, thanks for your welcome.  So sorry to hear about your wife, but think of some of the other ladies on here who have had good results second time around - so don't despair. (They give me great hope, I can tell you.)  I think it can sometimes be much harder for our partners than for us - I know my partner is taking it badly, the more so because he is in poor health himself and can't go with me to appointments etc. and feels he is of no help, though of course he is.  Fortunately his brother very kindly accompanies me to the worst meetings, so I am not without a "prop" at such times, but it's not the same as having my partner with me.

Re. your Mary's recurrence, apparently when another tumour appears anywhere in the body, if it is a breakaway from the original site it will retain the properties of that original site, so the medics can see from tests whether it's a secondary or a new cancer and will plan treatment accordingly.  I learnt this because this is my own current position, and I shall find out this afternoon whether mine is ovarian or secondary from past breast ca., and hopefully have some appropriate treatment started at last!  (Beginning to get a bit jittery now, as I always do before appointments!)

Love to you both, Hazel xxx

Good luck today Hazel,

I will be thinking of you... Whatever the outcome though you need to remember they can treat it with chemo....

Love Eileen xxxxxx

Bless you, Eileen, thank you. Will be in touch soon.

Love Hazel xxx

Hazel, thank you for your nice response.

Yes it is tough for the whole family, we remain positive for the best part though, but it does get to us all every now and then, I think we're entitled to that.

Good luck this afternoon, let us know how things go.

John

Thanks, John.

Hello all.  Well, the"good" news is that it is not a metastasis from the breast, so my treatment has been planned and will start asap, thank goodness.  It will no doubt be familiar to most of you, as it consists of 3 chemos (paclitaxel & carboplatin), CT to check progress, hysterectomy op, then 3 more chemo s - seems to be standard initial procedure.

I am so relieved to have something underway at last, though I never thought I would be pleased to be having chemo again after the last lot!

On a lighter note, the wig I've bought arrived just as I was leaving for hospital, so I had that to look forward to trying on when I got home.  It isn't too bad, though it might look better once I have no thick hair of my own underneath it, at the moment it looks to me as though my head is too big  ( no comments, thank you!).

Anyway, love to all, let's hope all our treatments do the job, eh?

Hazel xxx

Hi Hazel,

Sometimes 'better than expected news' is almost like good news. It helps a little that you know the drill, it's easier to except than first time around.

Mary had TaxolCarbo last time around and responded very well with few side effects, although the Taxol has left her with some neuropathy but small price to pay. I hope that it goes as well for you. And I'm sure you will look lovely in your new wig

Best wishes,

John

Aw Hazel that is good news. ( well you know what I mean )  It is good for the mind having a plan to go at. I think their is nothing worse than not knowing.  Did they say when you are starting your treatment ? I have found out the name of mine now, I had to ring the secretary yesterday to ask her.  I will be having one called Rotterdam regimen  Etoposide & Cisplatin. I have never heard of this one but have read up on it. I think it's only my hospital that does it.

Hope everyone is ok.

Love Eileen xxx

Hi, John, hope Mary is bearing up and feeling as well as possible.

Thanks for your reassuring comment about the wig, but sorry to say I won't look lovely in it as I have decided I hate the thing and am sending it back! 

Love Hazel xxx

Hi, Eileen.

Yes, I had a call yesterday, and I have to go for pre-assessment on Mon 5th March, then all being well start first session of chemo on Thurs 8th.

What's worrying me today is that I seem to have caught a cold (probably at the hospital!) so I'm hoping it's gone by then in case it affects the tests and delays the start of treatment again.

Blooming typical, isn't it - I haven't had a cold for ages, so I get one now!  I suppose I'm run-down from the cancer, but what a nuisance.

Your new stuff starts on 1st, doesn't it?  Fingers crossed for you! ( Fingers seem to be permanently crossed for everyone lately!)

Love,Hazel xxx

Hi, Eileen - it's me again. Have just been reading on-line about your new chemo, and it looks pretty hopeful, don't you think?

Love Hazel x