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

Good luck tomorrow,hope everything goes well for you.

Hi to everyone,things very quiet which I hope means everyone is OK.Roll on the warmer weather and we will all feel better then.

Rose xxx

Thanks Rose, im feeling a little unsettled today like i said dont fancy chemo or surgery again

but what must be must be. ive got to be there for 12 so il let you know how i get on when im back.

thanks for wishing me good luck it really helps.xx

hi all.

hope everyone remains well. I feel better this time round which hopefully means the 2nd lot of chemo was more effective than the first, one can but hope! am picking up colds like they are going out of fashion, on the 3rd one since the new year but otherwise feeling really good, legs working and arms not to bad, even done a load of weeding down the allotment!

Good luck for tom julygirl, I'm thinking this is the second time as it was for me, I was suprised that I found it more intimidating than the first time, thought it would be better as i knew what to except but didn't work that way so can well understand how your feeling. Let us know how you get on

All the best

Jackie

xxx

Hi Rose,Eileen.Jackie.and all you other lovely ladies out there.been to see new oncoligist today

seems very nice! news is ive got to have chemo again having he first one in 3 weeks time.

hairs going this time! so this is new for me didnt happen last time!.feel a litle numb about it at

the minute.but what must be must be, speak to you all soon big hugs sharon[julygirl58] xxxx

So sorry Sharon.Take time to get your head round this ,thump a few cushions and throw a few things.Do you know which chemo you will have?

Loads of good wishes for you

Rose xxx

Hi Sharon, at least you now know! Hate the hair loss, know its ridiculous but hate it anyway . I've been through my second lot of chemo and am now out the other side feeling better than ever, so stay calm and try and fill the next 3 weeks with things you like doing if you can! I spent my 3 weeks on holiday, I explored lots of local places I didn't even know existed. I struggled with walking but did it anyway cos it was what I wanted, I went out to lunch somewhere new everyday and really enjoyed myself. It kept me going once the chemo started but I have to be honest I found the chemo psychologically second time round, though physically it was a lot easier! obviously now am really glad I had it, just spent the day walking which I haven't been able to do for the last couple of years (weird symptoms but that's me all over lol)

Chin up you can do it

Best wishes

Jackie

XXX

Hi ladies I hope you don't mind me writing this, but I've been reading your posts on and off the last few months and I have to say you are all such an inspiration.

I was diagnosed with serious borderline ovarian cancer with invasive implants in Nov 2010. I had a hysterectomy and have just started my first lot of Chemo - Taxol/Carbo on Tues 15th. I'm starting to feel very tired and have a bit of numbness in my fingertips. But I am mostly apprehensive about the hair loss that is to come. I have felt very down today and can't face the next 5 cycles. I'm scared.

Take care ladies I hope all goes well for you - stay strong x

Hugs Sharon,

I agree with Rose, throw those cushions around.

I dreaded losing my hair too, but you know I love it lol, mine started growing back even through the hair loss. I don't even wear a wig, it was not upsetting like I thought it would be.

You are bound to be apprehensive, but we are here if you need to let off steam.

Big hugs and try not to worry too much!!

Dot xxxx

Hi Sharon,

Well that takes us all back about the hair loss, remember Dot ? you were dreading it and then found it wasn't as bad as you thought. I think I was prob the only one who it didn't bother. ( I have always been a bit odd ) Anyway just remember it grows back, maybe a different colour and it could be curly, straight, but it does come back. Just keep your thoughts on getting better and the only way is more chemo. Mine grew back and I had to have more chemo I must admit it was harder the second time as it was winter so not good having a cold head .

We are all still here for you Sharon and keep chatting. I know we have been very quiet for a while but we are here.. Just think how much you will save on shampoo and no more washing your hair.Sorry bad joke but keep laughing and don't let it get you down please. 

Welcome to our new girl lovely to hear from you. xxxxxxxxxxxxxx

HI Cubdear,

I am glad you decided to join us, it does help having the support from this group.

I too had numbness and tiredness, my fingers and feet are fine now, all of my side effects have gone apart from the tiredness, I am beginning to think it might be laziness now lol.

Hopefully your down feeling will go soon, it isn't unusual to feel like that at times.

hugggggs

Dot xxxxxxxx

HI Cubdear,

I am glad you decided to join us, it does help having the support from this group.

I too had numbness and tiredness, my fingers and feet are fine now, all of my side effects have gone apart from the tiredness, I am beginning to think it might be laziness now lol.

Hopefully your down feeling will go soon, it isn't unusual to feel like that at times.

hugggggs

Dot xxxxxxxx

Hi Dot,

Thank you so much for your reply, it would be good to talk about the effects of Chemo as time goes on. As I said before, reading all your posts has been very helpful and it helps me to not feel so alone in all of this.

My name is Sarah & it's lovely to meet you x x

hi Sarah, welcome to the group.

The very first dose of chemo is a scary one cos you never know what to expect, from here on in its much of the same though i'm afraid to say your symptoms will get worse with each dose but bizarely you except them better!! As you may have discovered I don't like the hair loss, twice for me now, actually I don't have a problem being bald its the lead up to it I hate and thats the bit your on at the moment. It's not knowing what your going to look like, how your going to manage it, what it'll feel like etc. Just so your warned the worse bit is when you need to descide when to get rid of it, it will get to a point when there is so much hair loss it will drive you mad and you will be forced to shave the rest off, once you do this you'll be fine. Honest.

Let us know how your getting on and post any questions or concerns. We may not be on treatment at the moment but we will be able to help. Try and stay positive cos it helps loads.

Take care

Jackie

xxx

Hi Sarah,

As the other ladies have said welcome to the group. I hope we can be a little help to you on your journey, and that's what it is a journey into the unknown but it's a challenge that we can all get through and remember we are here for you for any questions you need to know and for emotional support.. I found my partner was fed up listening to me moaning all the time as we forget they are actually going through this as well and have nobody to talk to.

I sound like a councellar sorry ha ha ......

Anyway take care and lots of love Eileen xxxxxx 

Hi everyone,

I hope you don't mind me chipping in, I saw that there were 460 posts in this thread and I don't really want to read them all, but I get the feeling this may be the best place for me to post.

My wife has ovarian cancer, she had full pelvic clearance in December and started her chemo mid January. She is on TaxolCarbo also, but it is a dose-dense regimen that was trialed in Japan with good results. This means she has weekly treatments, as opposed to 3 weekly. I posted about it here but not much response as yet. I just wondered if anyone else was on this so we can compare notes.

She has just had the 2nd treatment of the 2nd cycle (so 5 of 18 treatments), and apart from the occasional upset tummy and tiredness in the evening, she has been feeling really good for the majoity of the time. I know that this may get worse the more treatments she has, certainly her upset tummy was worse after her last treatment, but then the next day she felt really good again.

Her hair has just started to thin gradually over the past few days, so this is the next thing to deal with. We already have a wig and some headwear sorted, and although I have managed to keep her positive and upbeat so far, this could be the tough part.

It has also been suggested that she has a PICC line put in, as her arms are reacting badly to the 3 weekly carbo. Because she has another 13 treatments to go, it may be a good idea, but she is ancious about having yet another procedure, does anyone here have a PICC line?

I hope we can help each other with our experiences, best wishes to you all,

John

Hi John,

Welcome to our little group.

I was on Taxol/Carbo, 3 weekly but the side effects I was experiencing gave cause for concern, severe pain in my shins, pins and needles in my fingers and toes  and tinitus among other things, they suggested I went on to weekly chemo, (nothing was mentioned about it being a Japanese regimen). I am assuming it is the same thing but I cannot be sure. The side effects were reduced drastically for me and I was told they had great success with this procedure. My chemo finished in December and apart from being a bit lethargic I feel fine.

My hair started to fall out by the second chemo, I just shaved it all off and felt great afterwards, yet that was one of my greatest concerns.

Weekly chemo take its toll on the veins and many women had a picc line, all of whom said they were glad they did. I did think about having one but eventually got through the course with out it. I found near the end it was quite difficult to actually find a decent vein to use and it could take several attempts... but they do recover. I do understand how anxious your wife must feel.... if I had to have chemo again I would opt for the picc line.

I have found that everyone reacts differently to chemo, some have little side effects others have a hard time of it.

I am sure others will reply on here who have had the picc line.

Please feel free to ask any questions.

Take care

Dot

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

Quiet..... refined lol

hugssss Dot xx

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