Hi Redlizzie

I to have ovarian cancer diagnosed in Jan 2009. I had 3 lots of chemo, operation, and another 3 lots of chemo.

The main problems I had with the chemo were gross taste in mouth and nothing tasted like it should, neuropathy of fingers and feet, these got worse with each chemo, but taste improved after about 6 weeks, fingers and feet improved but I still have neuropathy in my left foot (and right but only when I walk!). Hair loss - very slow to grow back and now have corkscrew curls! Tiredness but only realised how bad once I returned to work!

Most of the complications I had with chemo have been rare ones but then I only got diagnosed with ovarian cancer due to a rare autoimmune disease! I developed arterial bloods clots (aortic settling in left Femeral artery) just before my 4th dose, had daily blood thining injections but still developed another clot 5 days after the 6th dose! The onchologist/haematologist aren't sure if its cancer or chemo related and they don't seem to have personally come across it before so please don't worry about it!

I would be interested in hearing about plans for followup when you get that far.

Best of luck

Jackie

Jackie,

I am worried about you as I have not heard anything from you and the other Ladies..xxxx

Hi Jackie,

He did mention the nodes but as I say can't remember what he said.

The chemo is Gemcitabine and Carboplating . I am so glad I have you to ask all these questions to and all of the ladies. Isn't it a pity that we are all not near each other, how good would that be...

Hope all you other ladies are ok... 

Hi Ladies, how you all doing?. mines in the nodes in my pelvis too i see my oncoligist again in nov.

Eileen hope your not to bad with the chemo this time and like you said you wont loose the hair.

keep us posted love to you all. sharon [julygirl58[ xxx

Hi Everyone

Eileen, hopefully you will cope better with the chemo this time.

I often come back from the hospital wondering if I understood as much as I did when I was in there lol. I don't really know what to say to you other than repeat what Jackie and Sharon have all ready said, it seems never ending, there is no choice over any of the things that is happening to us all, it is a case of going with what others (medical people) decide we need.

Just for a bit of light relief for you all............I have been given those 'lovely stockings' from the lymphoedema clinic and my legs and feet are not as swollen. They told me there is no way of knowing who will be affected with lymphoedema after having lymphs removed or damaged.

The first day I wore them I felt very tender and swollen where my ovaries were, apparently the stockings help the fluid to go to lymphs that are working and from what I see it is now going to my belly lol. I now have constant heartburn lol.... I will ring up and ask if this is the norm but I feel ridiculous asking the question haha. Writing this prompted me to ring up and I laughed when I asked about it, seems that the swelling elsewhere can happen but heartburn etc isn't usually associated with it, they told me that doesn't mean it can't happen, and recommended I speak to my doctor lol. I think I will just take more antacids lol. My dilemma is......swollen legs or swollen belly, which do I chose hahahahaha.

Eileen Jackie and Sharon my thoughts are with you all constantly,  I do hope we hear some good news for you all soon.

Hugs to all xxxxxxxx

Hi All

For what its worth my friend and myself can never remember whats said at appointments and she's still working as a nurse! just goes to show when its close to home the brain will only take in so much!!! We also have a habit of discussing things when we come out and can't believe that we let him away with some of the things he's said - they made perfect sense in the consulting room but none at all after!

Dot, I bet the stocking look delightful if you give it a while the lymph system in the abdo may get used to all that fluid again and your tummy will go down. Do make an appointment with your GP as Losec may be better than antacids(and there only once a day!)

Eileen, have heard of that as a combination therapy but don't know anything else, will look it up when I get time but things are a tad crazy at the mo! When are you starting it?

Judy I beat you have my next appoint on the 7th Oct hate going just because, I'm not ready for chemo so whats the point??? Oh sugar that means I'll have to get some blood tests sorted what a waste of time.

Extension going up rapidly and the good weather has helped them (but not me lol really really itchy again ) have been stripping wallpaper and it feels good to be more active, can't do much but by sitting down for 5 mins frequently I'm getting there!

Keep us informed of events

Take care

Jackie

xxx

Hi everyone,have had 3 of my 5doses of radiotherapy .H ave been told that they are large doses and I am only having 5 because the body can't take more of that strength at one go ,that is different to what I was told in clinic.( was told they would be low doses )'Feeling. A bit sick, tired and sore already though  they said the side effects will probably not kick in until I have finished the course. Found out why I was offered radiotherapy when it is rarely used for ovarian cancer .apparently most women have a more wide spread cancer,which is difficult to treat,and as my 3 areas of spread are so close together it is possible to "Blast "them all at once .At the moment it feels as if I have a solid cannonball in my abdomen still upwards and onwards hope you are all as ok as you can be love Maisie x x x

Hi Maisie,

sorry to hear you are feeling sore after your treatment, I have heard differing reports on radiotherapy, many have been very positive, I just hope the side effects don't last long!! You sound positive and that is great!!

I hope all goes well with you

Hugs to you...........Jackie Eileen Sharon, and anyone else who needs one.

Dot xxxxxxxxx

Hi All

Good to hear from you Dot, Maisie hope your feeling better or at least coping with the side effects.

I saw my onc Friday and have another 3 month reprieve! He showed me a letter he'd written 3 months ago saying he would review in 3 months but expected me to need chemo before that, he told me to keep proving him wrong (like I need that challenge lol). CA125 only up 20 from 3 months ago, if it dosn't suddenly rise I could do another year lol. Anyway feeling good, weather colder which suits me better despite having no windows at present! extension should get its roof Wed, and the windows should go in Wed which at least means we get the living room back for a while!

Hope your all doing OK, waiting to hear from you Eileen!

Love

Jackie xx

Hi Jackie , Dot, Sharon, Maisie, John & anyone else I forgot to mention,

Jackie that is brilliant news I am so happy for you.xxx How is the house coming on? I hope it's not too much of a mess and I really don't know how you are coping with it. Your very patient. I have decided to stay on renting my friends house as I was sick of looking at places that just didn't do it for me. I should have rang Kirsty & Phil ha ha.. Anyway I have been painting and moving boxes from one place to another. I have ordered some blinds for bedroom window so at the moment I have newspapers at the window ( bet the neighbours think the clampets have moved in )

I had my first lot of chemo on Friday, what a place this hospital is. My appointment was for 4.30 and I got hooked up to canula at 8.30, nobody took my blood pressure before or after nor temp. I got out at 11.15. I was spoilt I think at my last hospital and as I know this one is the biggest and supposed to be the best in the country they are running people through constantly so it wil be expected. They have put me on a 1 hour bag of carboplatine & 30 min of Gemcitine I think it's called.

Next Friday I only have the Gemcetine so not too bad, then the week after nothing, it all starts again then so will go on until February. I have already started with thrush in my mouth and woke up at 4:45 with the steroids and a bright red face, so took an antihistamine.

Anyway ladies keep sending all the good news and Jackie take it easy with all that work be done.

Love as always Eileen xxxxxxxxxxxxxxxxxxxx Ps really miss you Rose. xxxxxxxxxx

Hi Eileen

I didn't realise you were starting chemo so quick, must have missed it or miss-read what you'd written. What a pain if you have to wait so long each time, not sure I would be so patient! Don't worry about the blood pressure or temp that only relates to Taxinol, as far as I can work out they don't do it for the others lol. I get oral Thrush each time my steroids go above 10mgs, there are treatments so if it don't go say something as I find it really effects the taste buds . So far it don't sound like its affecting you to much and your not heading towards an admission, so that's something!

You sound like you have much more energy than me, I'm stripping wallpaper and achieve 2 sheets per day lol but hey that's enough to keep me happy! The house is coming on but its a total mess, the one advantage is there's no point wasting time cleaning it at the moment! Front windows arrive wed, you have newspaper I've got ply board lol. Think it will get worse when they move indoors to the chimney and wall moving but I'm sure it will be worth it

You take care and don't overdo it as the chemo builds up, stay positive remember I 'only' got 6 months out of my first treatment but am now a year from my second one and still going strong!

Lots of love

Jackie

xxx

Hi all

Eileen I hope you cope better with this chemo, I could never understand why I had to leave home at 9am and not get back until after 5pm for what was really a couple of hours treatment,  I do hope that it won't be as long for you every time and that you don't have too many side effects.

I hope you are able to settle into your friends place and not have this house hunting hanging over you anymore, you have enough to deal with at the moment.

Jackie great to hear your news, I don't have much energy either but I am not sure it is because I have just become lazy haha.

Sharon and Maisie I hope all is going along as it should with you both

Hugs to all

Dot xxxxxxxxxx

Hi all

Eileen I hope you cope better with this chemo, I could never understand why I had to leave home at 9am and not get back until after 5pm for what was really a couple of hours treatment,  I do hope that it won't be as long for you every time and that you don't have too many side effects.

I hope you are able to settle into your friends place and not have this house hunting hanging over you anymore, you have enough to deal with at the moment.

Jackie great to hear your news, I don't have much energy either but I am not sure it is because I have just become lazy haha.

Sharon and Maisie I hope all is going along as it should with you both

Hugs to all

Dot xxxxxxxxxx

Hi dot jackie and all you other ladies,  thanks.for your good wishes things turned out a little different to what I expected !!!!!.Horrendous diarrhoea for this last two weeks it rather limits leaving the house ,,  the only plus is that my time for running upstairs to the bathroom has improved greatly I might even apply to enter the olympics . Have felt very lethargic have had much more pain than before BUT it all seems to be settling down now not out of the woods yet ,but I feel I'm getting there .Wont know for another 6 to 8 weeks if has done any good .I'm sure you have all coped with worse,and some of you are coping right now ,my thoughts are with you .I was stunned to hear how long hospital waits for chemo some of you have had.Over two 6mth sessions of chemo, I was only I ever late once for an hour and that was because the pharmacy was late sending up the chemo all other times it was about 2hrs. Then home.I go to Weston Park Hosp Sheffield which is specifically for all types of cancer very busy ,with a large catchment area.so they don't do so bad.They even offered me a manicure  ,( there is a beauty treatment room just by the chemo suites ) on the day I had to wait ,my nails are rubbish but I had them done anyway !!!.   Love and Best wishes to everyone take care.      Maisie.     XXX

Hi Maisie

Glad to hear from you, shame about the diarrhoea and the lethargy but hopefully everything will start to settle down soon.

Like you I've never had to wait for chemo (though I did once have it on a hardbacked chair in the middle of the day unit lol).

Will be keeping fingers crossed for the next 6 weeks!

Take care

Jackie xxx

Hi Maisie

Sorry you are having a rough time but I love that you are keeping your sense of humour about getting to the loo faster lol. It might be worth you enquiring about Loperamide, Eileen and I have IBS and every step of the way of my treatment I had to take it just to get out of the door, it caused me a bit of a problem with the operation because 'it bunged me up' lol and they were trying to empty my bowels teehee.

The not knowing is difficult to handle, we just have to trust in what 'they' are doing, are you given anything to manage the pain? Stay as positive as you are!!

Hi Jackie Eileen Sharon and everyone else

Hugs to all xxxxxxx Dotxxxxxxxx

Hi Ladies,

Sorry not been on but I was in hospital for 4 days. I only got out last night. I should have had my 2nd chemo last Friday but my bloods went down to 0.8 so they wouldn't do it. I had been have in trouble with my bowels after the 1st chemo but (   consipated then watery stuff ) It was awful as I couldn't keep off the loo.  Anyway Sunday there was blood and a mucus in my stools so I rang the hospital and they had me in...

My bloods went up to 1.6 on Monday then down to 1.1 on Tuesday so I had to have the injection in my tummy which brought them back yesterday to 11..... So I should be having my 2nd chemo now a week tomor, so fingers crossed.....

I had a leak in the house last week, well actually 2 leaks... So the scaffolding went up yesterday and they need to do the bay window and some pointing ....Not as bad as what your going through Jackie.. Hope your coping with it all..

I hope everyone is and keeping the bloods up.....

Love as always Eileen xxxx

Hi Eileen,

Sorry to hear you had to go into hospital yet again, I thought you would have done better this time with a different chemo. I wish I lived closer to you and could give you a big hug, nothing seems to run easy for you at the moment.

Let's hope the house gets sorted quickly for you.

Love to all

Dot xxxxxxxxxxxxxxxx

Hi all

Poor Eileen like Dot I though you would get away without a hospital visit this time, must be the carbo which is affecting you bloods (?)

Glad the leaks are being sorted but its something else you don't need right now. Mines going well thanks, its so much chasos its easy to ignore lol. The first extension is up, waiting for widows wed then they can sort the inside. They needed to attach it to the roof and found the old batons were rotten and the felt torn in places, so they are replacing it, at the moment all felt in place (so it can rain if it wants) but no tiles! They rebuilt the front of the bungalow (don't ask) so have no radiators in sitting/dining room, I have a gas fire but they are removing the chimney so that will go to . The builder is trying to get his plumber friend to install radiators Mon . so its all go, total madness but me and my dogs are just ignoring it all. On a plus side no point in housework!!!!!!!!!!

Hope you stay well till your next chemo

Hugs

Jackie

xxx

Hello ladies,

Sorry to interrupt your lovely thread but I thought some of you might be able to help. We have a new lady on Cancer Chat who is awaiting results for ovarian cancer and has an appointment on the 28th regarding those results. She seems quite nervous about it and would like some advice on the kinds of questions she should ask at her appointment. Last time she had an appointment, she was too upset to think of questions to ask so I think now she wants to feel prepared. So far nobody has replied to her so I thought I'd drop you a line and see if you have any advice to give her as you have all been there and gone through that first appointment before and might be able to advise and/or comfort her. Anyway, you can read her story and, if you wish, respond to her thread here.

Thanks a lot for your help!

Lucie, Cancer Chat Moderator

Jackie, I just read your post and wanted to thank you dearly for your brilliant response. You have really covered it all and I am sure your positivity will make a difference in this young lady's long waiting days. She will also probably feel less lonely knowing that all of you are here if she needs to talk so it was a great idea to put a link to your thread and your link worked very well.

Sorry again to have popped in your thread like a Jack-in-the-box  but I thought it would have been a shame to leave her waiting and so anxious on her own knowing  that you lot are so supportive and knowledgeable in the matter!

Lucie

Hi Lucie

No problem pop in anytime! As we have all been living with this for so long now we tend to rely on the e-mail to tell us when to pop in, very lazy I know, but looking though main thread daily does take up time which is precious when its limited! So if you come across anything which you think we can help with plz do pop in and let us know.

Also thank you very much for the positive feedback, I do wonder at times if i go to far, its very hard to judge when its a personal response.

Jackie

Thanks a lot Jackie - I completely understand you don't have time to read all the other threads and if I see anything like this again, I'll let you know! Dot agreed with me that your answer to her was very helpful. Thank you Dot also for replying and being so welcoming. You are a great bunch !

Lucie