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 Sharon,

Don't worry about the Grandchildren as my 2 boys aged 10 this year thought it was cool. Try not to make a big issue about it and they will be all right. I bought some lovely bandanas from a shop near me and have a few different colours to mach what I am wearing, I went out the other day with a red & white striped top ( very loud ) with a red & white polka dot scarf, I do like to noticed ha ha but don't try and hide away let people see how you / we are positive people with a lust for life..

Love to you and your family xxxxxxEileen xxxx

Hi John,

Welcome to the group of mad women ha ha. I think it's fantastic for you to have sent your lovely message to the site....

I haven't heard of the Japanese regimen either. I was on Carbo/Taxol and started mine last April. I had 5 all together then a full hysterectomy with de bulking in October, I was supposed to have 6 but refused the last one as I felt so ill from it. Each one you have it gets harder as everyone will tell you but we all come out the other side. I lost my hair just before the 2nd chemo but it grew slowly. I then had to have 3 more chemo which started in November so again I lost my hair. I only managed another 1 as this time it was harder. ( My Dr said that after surgery the chemo hits you harder ) Anyway my hair is growing back again and I don't see my Dr until May as it goes to a 3 month check up.

I think your wife is very lucky to have you as you sound a lovely man. If she wants to talk to us about any worries she has then we are here and I hope you continue to post your thoughts with us. ( we are very nosy you know  ) Ha Ha just watch out for Rose she is the comedian out of us all, Jackie is the wise old owl sorry about the old bit Jackie, and Dot Sharon & anyone else I forgot are the quiet refined ladies. I am the barm pot who waffles on all the time.

  Love to you and your family ....Eileen xxxxxxxx

Hi Ladies & John!

John - just to say my boyfriends dad has a picc line for his chemo & said it's the best thing, it makes things so much easier. I'm gonna try and carry on as I am as I only have 5 more to go. Although my veins are very small and it is rather painful when they start stabbing!

Sharon - I'm with you with your worries of hair loss. I too am very scared. I've cut my hair short, but think there might come a time to shave it when it starts falling out. I'd only just bought some new hair straighteners when I was diagnosed how typical is that!

Well for a 33yr old I feel like a 90yr old today! My joints have started to ache and it's very uncomfortable. Didn't sleep very well last night. I felt so guilty that my boyfriend had to cook tea and stuff when he'd been at work all day. There was I moaning that I hurt. But I was so tired I had no energy, which isn't like me I'm always doing stuff.

Anyway, hope you are all well have a good day & keep smiling,

Sarah x

Quiet..... refined lol

hugssss Dot xx

Bless you Eileen you so make me smile!!. you like your colours then!.

im thinking of goin to have my hair cut next week so maybe i wont feel

so bad then.its coller length at the minute.my partner isnt taking it to good either

weve been together 23yrs he always says im stronger then him!

but i dont feel it since all this crap started!.but im trying really hard.

anyway on a lghter note hope to put my photo on later! with hair!!!

lots of love sharon.xxxxx

Hi Sarah, this will be my second cycle of chemo but i didnt loose my hair with the first one.

so im rather scared this time.hear i am moaning i have a daughter a year younger then you.

you shouldnt be having to deal with rhis crap!!! anyway were always hear to listen day or night.

keep in touch.a BIG HUG to you. sharon [julygirl58] xxx

Hi everyone

John welcome to the group, I've never heard about the japanese method but I've been here from the start and therefore know that none of us have had exactely the same treatment though generally the drugs used are the same! As for the PICC line go for it!!! I would have, I even asked for it but then managed to take the dr and myself out of it due to my blood clotting disorder! Generally PICC lines do not cause problems, there is no faffing about trying to find veins that only get worse as treatment progresses and they are eary to care for, 1 needles verses 6 wins in my opinion lol

Sharon and John's wife, hair loss usually happens at week 3, best too get the shave over and done with as soon as it starts to seriously fall out. Chances are you won't (I didn't either time!!!!!!!!!) but it really is the thought of it more than the reality, once the hairs gone its fine its the lead up to it thats tourcher. I don't have kids but as a baldy seem to attract every youngster in the place, tiny little uns smile and grin at me and I find myself playing peek a boo when in que's!!! Older kids are a bit more reserved, thnk they've learnt that women should have hair but they soon get past it. As for it growing back thats the fun bit, it takes ages (bearing in mind how often we visit hairdressers normally) both times I've grown back very grey but gradually it fades and I get my old colour back, the frist time I ended up with corkscrew curls this time it seems to be straight!

Eileen, old yes but i doubt wise lol

take care people

Jackie

xxx

Hi Ladies,

Thank you all for such a lovely welcome, your kind words, advice, and for sharing your experiences. It is very helpful, and I hope that I may be able to help some of you too by sharing our experiences. I may not always be prompt in responding, but I will try to respond whenever I have a bit of free time (I don't get much of that at the moment).

@Dot - I wonder if it was the Japanese regimen that you had, it goes as follows: Cycle 1, week1 - Taxol for 1 hour, Carbo for 30mins, weeks 2&3 - Taxol only for 1 hour. Then Cycle 2 starts on week 4 (same as week 1) and so on for 6 cycles over 18 weeks. I wonder why they don't spread the carbo over 3 weeks also, i.e. 10mins per week. Logically it seems to make sense that your body would be able to cope better than being bombarded for 3 1/2 hours every 3 weeks! For example, if you had a need for pain killers and the maximum dose was 8 in 24 hours, you wouldn't take them all at once! But I guess they know what they're doing.

@Dot, Sarah & Jackie - Thank you for the reasurance regarding PICC lines, it sounds like the best way to go, my wife has another week or so to consider it.

@Sarah - Don't ever feel guilty about your boyfriend having to cook your tea! I do it every day and don't mind in the least, I'm sure he doesn't mind at all either.

@Eileen - My wife had her surgery before starting chemo, I know some have it the other way around as you did, a little confused about that but I suppose it depends on individual circumstances. My wife had a huge ovarian cyst, so the surgery needed to be done first. She has been quite lucky so far with regard to side effects but appreciate that things may get tougher as it builds up. I will invite her to come and chat to you all but I think it's unlikely, she'd rather let me waffle and let her know what people say. Thanks for starting this thread and for introducing me to everyone .

@Sarah & Sharon - I hope that you cope ok with the hair loss. My advice would be not to get a wig through the hospital, but go to a specialist shop and try some on. The hospital asked my wife to choose 2 wigs from their catalogues, then she could keep whichever one she preferred. The hospital will have a list of shops that will supply NHS wigs, private wigs, or both. There is no way you can choose a wig out of a catalogue! you may get lucky but it is a real gamble. My wife had a lot of fun trying lots of different wigs on, some that looked perfect for her were actually awful when she tried them on, so I would stongly advise not to start the process with the hospital, as you then do not have the option of getting a free NHS wig elsewhere. Good luck!

Best wishes to you all, and thanks again,

John

Hi John,

The reason I had my chemo before the surgery was because they couldn't get to the tumour. It was 6cm and they said about 2 cases a year come through like mine so they wanted to shrink it as much as they could before operating. It was pressing against my bowel so they thought it could have been attached itself to it. The surgeon refused to do it at first even though it had shrunk to 1cm, anyway I asked again and after looking at the scan he decided to.

The chemo afterwards was to mop up as they call it...

  Take Care and thank you for your message. Eileen xx 

Hi John

I had the premed which lasted roughly half hour (to prevent sickness etc)..... taxol for an hour then the carbo for an hour or vice versa lol. It was still an all day process, I would go every week for 3 weeks then a week off, so it does sound different. The side effects were slight then, which was such a relief.

I hope that makes sense lol.......seemed a long drawn out way of explaining it.

Take care Dot

Hi John

I had the premed which lasted roughly half hour (to prevent sickness etc)..... taxol for an hour then the carbo for an hour or vice versa lol. It was still an all day process, I would go every week for 3 weeks then a week off, so it does sound different. The side effects were slight then, which was such a relief.

I hope that makes sense lol.......seemed a long drawn out way of explaining it.

Take care Dot