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 Helen, and welcome to the forum,

I am so sorry to hear of your recurrence, did they say why surgery was too risky? I am here supporting my wife Mary who was first diagnosed in November 2010, she had full pelvic clearance surgery followed by Carbo/Taxol treatment. She responded very well to the treatment although it did leave her with some neurapathy in her toes which has still not subsided (side effect of taxol).

We thought she was cured, but 8 months later she had a recurrence and is now back on chemo, Gem/Carbo this time because they do not want to make her neuropathy worse. She has just finished the 2nd cycle and seems to be feeling mostly well to it so far, although having a bad day today after yesterday's treatment.

Yes, the news does knock you for six and it is upsetting for the whole family, I completely sympathise and understand how you feel and I hope the ladies on this thread can help in some way. We kind of have to get used to it and try to get on with our lives although it is tough sometimes. I do hope you respond well to your treatment.

Best wishes,

John

Hello, Helen, and welcome!

You have certainly come to the right place for support and info!  If you want to find other ladies who have been in a similar situation to you, I would advise you to read through some of the stories on this site.

You seem to have a good attitude, and that can only help.  I am at the beginning of my ovarian cancer (although I did have breast cancer 15 years ago) but there are lots of lovely ladies on here who know how you are feeling right now, and I am sure they will be in touch.  (Be patient, as some of them are recovering from various treatments at the moment, and as you will know sometimes you can feel a bit rough!)

Love, Hazel xxx

Hi Ladies,

Just an update on Mary. Looks like the chemo finally caught up with her as she had an awful day today spent mostly in bed. Was sick three times this morning and has eaten nothing today. She went to bed at 7pm hoping to sleep it off as we were supposed to be going to Wembley tomorrow to watch Rugby.

I keep thinking I have given her meds at the wrong time, she has so many it gets confusing just after chemo. When should she take her first Ondansetron? Is it after dinner on the day of chemo? I gave it to her in the morning and I'm thinking I probably got it wrong.

Jackie - So you have a Portacath too now? Yes it is much easier, although I wonder if giving Mary the chemo faster may have caused her reaction. They had to slow it right down when they used her arm because the Gem hurt too much, any thoughts? Re-Aspirin, I haven't read anything about 3 & 5 years, like you say it may just be down to luck, all subjective but will discuss it with the onc in 2 weeks time.

Sharon - I hope you're results went ok yesterday.

Hope you all have a better week,

Best wishes,

John

x

Hi John and Hazel.

Thank you for replying. It is good to hear from people going through the same sort of things. The doctors chose not to do the surgery as it is wide spread in the abdomen and they couldn't be sure it would help me in fact it wouldn't be conducive to my health. So they felt that chemo would help to contain and control the disease as they cannot cure it. But as I have said it is as started up again. I feel tired tonight after having chemo today but that is all so I hope that is all I get. John I hope your wife gets through the chemo well and my prayers and thoughts are with you both. Hazel I understand about the quantity and quality thing and maybe further down the line I will have to think about it too, but not yet as I feel pretty good. Will pray for you too and hope that you won't be faced with making that choice for a good while.

Thinking of you both

Helen

Morning, John,

How is Mary today?  Poor girl, it seems to go from one extreme to another with these treatments for us all, doesn't it?

Give her my love and tell her I wish her better.

Love Hazel xxx

Hi, Helen,

Don't you worry,  I'm nowhere near giving up yet - like you I feel far too well at present,  apart from post-chemo!

Love Hazel xxx

Morning Hazel,

Good news, Mary has slept it off and feels good again today, so we're off to Wembley to watch the Rugby

Thank you for thinking of her, have a good weekend,

John

x

Hi Everyone hope your all doin well as you know i went for scan results on thursday what a waste of a morning!

my oc wasnt there so they got a young doctor to fill her slot who could only tell me ive got to have chemo again

but couldnt say which id be havin because thats down to my oc so ive got to go back in 2 wks to see her.why

couldnt they just ring me and rearrange my appointment.my partner wasnt impressed at all!. just wont to know

dont you and get the treatment set up.

John and Mary

Glad marys feeling ok enjoy the rugby my partner and 2 of my daughters have gone to watch aston villa v

chelsea [we live in the midlands!] but my daughter is more interested in Frank Lampard! still does them good

to get out takes there mind off things dont you think. xx                                                                                                                                                                                                                                                                                                                          Hi Helen just wont to give you a Big Welcome were always here to support each other or have a moan at!

anytime day or night so i hope some of us can be an help to you  what ever the problem might be

take care sharon [julygirl58] xx

Hi All

Glad to see not to much suffering following treatments! hope the nausea tabs still working Haze!

Judy that's total c***, ring PALS and complain, if I remember rightly you've already had quite a wait and maybe they can get a senior person to prescribe the chemo and get you started. I know its frustrating but to be fair the consultant may have been ill and they didn't have time to inform people but just managed to get a junior to cover (it does happen occasionally) but I would still go through PALS and see if they can sort anything

Welcome Helen. know exactly how you feel, I'm on my 3rd lot of chemo, though only 3 months from the first beats my 8 months! have they changed your chemo this time? They changed mine after the first recurrence and I got 18 months out of the second, so there is hope. I to normally have no symptoms and feel well (though not true in the last 2 months!) and it is hard coming to terms with it when you don't feel anything, I'm of the opinion that your body tells you best and go with it. Once you accept that this is a treatment and not a cure it does get easier, regardless of what they say I think the first time we all hope for a cure or a very long remission, but when it comes back you quickly adjust and its sort of, been there done that! Eileen is our lady that finds it most difficult as she responds badly to every dose of chemo bless her, so for her the chemo is torture while the rest of us get away quite lightly. Personally I refused a prognosis (and its worth thinking about) because I don't want to count down each day nor do I want to know if I pass my sell by date (which I think I have already done!) However everyone is different but as I say have a think about it. We have all decided that the best approach is to keep positive, we don't always succeed but we do in the main and we take encouragement from dear Dot who was given the worse prognosis but has done better than any of us!!!

John glad Mary has bounced back so quick, my understanding is that the chemo is very hard on the veins not to say painful, however when given through the portacath which feeds into a much larger vein the blood is flowing faster and therefore it dilutes it much quicker. so in theory her reaction probably wasn't due to the speed more likely just the chemo its self, it is after all pretty lethal stuff! Re ondansetron, I assume this is what she now takes for nausea, start it after chemo, I think they will probably give it IV just before they start the chemo (though I can't see that giving it twice would cause sickness)

My abdo pain was bad yesterday but while I had a bad hour this morning its been tolerable since and I've managed to do a bit of housework! maybe the buscopan is working i certainly hope so. Due to the blood thinners I take my porta cath site is very swollen so I actually have a bust on one side (sorry John)

Keep well everyone

Jackie xxx

Hi Jackie.

Nice to hear from you. I am having the same chemo again but instead of every three weeks I am having it every week, and also the Avastin drug as a maintenance drug to run alongside is being sort after by my oncologist. I will try anything to help me. I have asked what my prognosis is and my onc said  it was incurable and the aim was to contain and control, she couldn't give me a time scale it but I would be the one too tell her when my body has had enough then she would be able to give me some kind of time line if I stopped the chemo. So at the moment I feel good apart from the tiredness, some nausea and mega hot flushes. I don't mind having to have the chemo as long as I can be here.

I hope your chemo gets easier for you and doesn't cause you too many problems. We have to remain positive for our own sanity.

Take care

Helen

Hi Jackie.

Nice to hear from you. I am having the same chemo again but instead of every three weeks I am having it every week, and also the Avastin drug as a maintenance drug to run alongside is being sort after by my oncologist. I will try anything to help me. I have asked what my prognosis is and my onc said  it was incurable and the aim was to contain and control, she couldn't give me a time scale it but I would be the one too tell her when my body has had enough then she would be able to give me some kind of time line if I stopped the chemo. So at the moment I feel good apart from the tiredness, some nausea and mega hot flushes. I don't mind having to have the chemo as long as I can be here.

I hope your chemo gets easier for you and doesn't cause you too many problems. We have to remain positive for our own sanity.

Take care

Helen

Hi Helen

Some of the ladies here have had weekly chemo which seemed to work well for them, I'm surprised they haven't altered the chemo as NICE guidelines to recommend changing if you get less than 6 months 'remission', on the other hand I suppose it makes sense to try weekly while adding the Avastin and keep the others for use later. Some seem to follow the guidelines while others do there own thing!

The 'prognosis' conversation sounds reasonably to me, I think your consultant has handled it well. 3 years and 3 lots of chemo later my body is not telling me I've had enough!

Take care

Jackie xxx

Hi Jackie,

I remember you making this point about a year ago when Mary was on a Japanese regimen of Carbo/Taxol. This time around, her consultant has prescribed her GemCarbo but has split the dosage equally for week A and B. This confuses the hell out of the chemo nurses as they always think that she is on week A and needs to go to clinic. Yes, her consultant certainly seems to do his own thing and I asked him about this at clinic.

His rationelle was that many ladies cannot cope with the recommended dosage of chemo for week A, and so many times their neutrophils are too low to receive treatment on week B. By adjusting the dosage so that it is split over week A and B, you are less likely to miss a treatment session so that has to be a better schedule.

You cannot really argue with that, he is the top oncologist at the hospital and surely the NICE guidelines are eventually moulded by the best oncologists. We have faith in what he is doing, of course he cannot promise a cure but he will do his best to ensure her the best quality and quantity of life that he possibly can.

I also remember you saying that your onc plays it by the book and you felt like hitting him over the head with the book! LOL - well perhaps you should!

It's very quiet here at the moment, I hope everyone is ok.

Best wishes,

John

Hi All

Glad to hear all your news John it all sounds very positive. Fingers crossed the anti sickness will work this time, it will make the  treatments so much more tolerable. I'm glad the aims of treatment have now 'out in the open', it makes life much easier as you can now discuss things without worrying about what you are saying.

I just wish that the NICE guidelines filtered through quicker esp as my cons it not of the free thinking variety!!! on the other hand I can't complain as what he's done has worked well for me so far.

My sister is visiting at the mo (which is nice) and unfortunately my hernia problem is making using the computer difficult, so if i'm not around much don't worry, i'm actually fine!

Hope things continue to do well for you both

Jackie xxx