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 Eileen

So its back in the pelvis (same here) you don't think its in the nodes (mine is, makes no difference) its probably pressing on the veins in your groins which is causing your symptoms, all in all not as bad as you expected! He can't be using my chemo as I still lost hair though not as fast and not as much, so let us know the name of it when you catch up with your friend.

Not great news like our Dot but not bad either, I assume he's changing the chemo as you were so poorly last time so you need to behave this time lol

Take care

Lots of love

Jackie

XXX

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 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