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, 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

Eileen it is so good to hear from you and that you are doing good!!

Yes I remember worrying about my hair lol. Mine started to come back pure white but turning to a grey now lol, the back and sides are really thick but the top is a lot thinner, I could become Friar Dot lol.

hugss

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 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

Hi Eileen & Dot,

Thanks for explaining, we're still learning about all this but it seems that it's not a one size fits all scenario with regard to surgery and treatment, which makes sense I guess. But it's great to be able to compare notes with you all.

With regard to side effects, and I know it's early days to be talking about how good my wife feels atm, but you may be interested to know that she has been taking a liquid iron formula made by Floradix (other brands available). This stuff was mentioned by her oncologist at her pre-chemo appointment, he said that many of his patients were reporting a good response to treatment while taking this. Now I know it's all subjective, but it may be a contributing factor as to why she is responding well for the majority of the time. She started taking it a week or so before treatment, and she seemed a lot brighter and livlier after about 6 days. Just coming to the end of her second bottle now, and I don't want to stop giving it to her because I'm kind of pinning some of our hopes on it.

I have talked about this a bit more in my thread if you're interested.

@Dot - When they told my wife about the treatment they were recommending, we were initially told 3 weeks of treatment, then a week off. Then later they contacted us to say it is infact every week without any breaks. So it is clearly quite new in the UK and they were getting it confused perhaps with the treatment that you received.

Best wishes,

John

Hi John, I was diagnosed in 2008 with cancer in both my ovaries, and the same as everyon else was really scared of what was to come, the not knowing is the worse thing.I had a full hysterectomy, Oopherectomy and removal of the omentum, (in short they removed my womb, ovaries fallopian tube, cervix and the fat layer between my bowel and stomach) followed by 6 sessions of chemo.

The nurses in the chemo unit were very good, they explain in detail what would happen and the possible side effects. I had carboplatin and taxol. Not everyone has the same side effects, on speaking to the other ladies on the unit we found that some had mouth ulcers, others had really painful joints, sickness, extreme tiredness. Nerve damage from the taxol in hands and feet , (loss of sensation and pain) also sickness. we were given medication to combat these side effects by the chemo unit each time, before we left the unit. i had my chemo every 3 weeks, depending on my blood results in between each chemo. I would take steroid tablets the night before and the morning of my chemo session. Then when i got there they put a canular in and gave my a type of premed anti sickness more steriods etc, before they gave me the carbo & taxol, it took about 6 hours to complete then I would go home with my meds till the next one was due.

Some people had 1 of these side effects, others had 2 or 3, I my self had all of them except mouth ulcers, I did loose my sense of taste, this came back slightly in between each session. My hair started to fall out just before my 2nd chemo, I had been and ask my hairdressers to cut it really short before that, so it wouldnt be so much of a shock. Then when it started to fall out it got everywhere, in the bed all over my clothes, so asked my hubby to use the electric shears to shave it all off. At first I didnt want to look at myself, then I thought about it and decided that it was best to get it over with. I was given my wig before my hair fell out and it was a pretty good match for my own. I chose to wear bandana's in the house, as it made it easier for other people. for myself it didnt bother me as I saw it as something that had to happen, if I wanted to still be here in a couple of years time, almost  a badge of honour and nothing to be ashamed of.( hope that doesn't sound stupid). Also its amazing how much you save on shampoo and hairdressers ha ha.

When I was at my worst from the chemo ( usually 3 days after my session) I would take myself to bed, and sleep a lot, take the painkillers for the joint pains, and the anti sickness pills. All I asked of my hubby was to pop up now and again to see if I needed a drink or anything else, other than that i just stayed in bed till it started to wear off. I had to have a blood transfusion after my last chemo, as my blood levels had dropped too low.

One thing you have to be careful of is anyone coming to see you while you are having chemo, who might have an infection as your immune system is really low. I caught an infection and had to go into isolation at the hospital for a week, in the middle of my treatment.Having said all that, it is now 3 years in May since I was first diagnosed. I am still here with my family, having seen the birth of a new granddaughter, and about to see my other granddaughter get married in July. I think that a positive attitude goes a long way to helping you get through the treatment. I decided right at the beginning that I wasnt going anywhere. so they could throw whatever they had at me as long as I got better. Even the hair loss, its only hair and it will grow back. I have permenant nerve damage (neuropathy) in my hands and feet from the treatment, but its small price to pay for my future.

The best advice I can give you is talk to your doctors and nurses if you have any worries, no matter how small, also the McMillan service is second to non, they help with benefits and advice they are brilliant.

I wish you and your family the very best of luck on your journey through cancer, and a happy healthy future, dont give up the fight.

Love and best wishes

Ann

xx

Hi Ann,

I have just read your post and have found this extremely helpful. I too had tumours on both ovaries and had everything removed, including the omentum. At 33 this was a massive blow as we haven't any children. I've just started my Chemo on Tues. I have had exactly the same effects 3 days after treatment. I suddenly felt like I'd been hit by a truck. Pains up my legs & my joints aching was the worst - like you I just took myself off to bed in the end.

But today I feel better again it's strange! Does this mean the effects only last a few days then your ok till the next one? I know everyone is different.

Sarah x 

Hi again Sarah & John

Ann hello to you... I have remembered also and not sure if any of the other ladies have put on site that you need to drink lots of water and I mean lots....

I also had bad aches in my legs and have been left with neuropathy in my toes. But it is a small price to pay... Also my temperature never went up so I never knew I had an infection. So if you feel like your getting a chill then don't hesitate to ring the hospital....

Good Luck Eileen xxxxxxxxxxxxxx