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

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 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 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 cub dear, i am sorry to hear that you hadn't had time to have a family before all this happened. I was 56 when I was diagnosed, and had my children when I was fairly young.

As to you question about the length of time for the symptons, each person is different, most of the people who had their treatment with me had very little, some even went on holiday during theirs. I already had angina so it hit me harder. I really didnt leave the house in 9 months except for hosptial visits, as the pain in my feet made it extremely difficult to walk. I used to have my chemo on a wednesday or Thursday, the effects started on the Saturday. I was in bed for at least 3 or 4 days. Then I would start to feel a lot better by the following Saturday, then I would have a week of feeling not too bad, then the chemo again the next week.

The nueropathy in my hands and feet is a bit better, more so in my hands, unless I over do things then they ache. But the chemo damaged the joints in my feet, and destroyed the soft tissue under the soles of my feet. This has never recovered, but I still get about as I wear hotter shoes, they have a lot of padding in the bottom of the shoe which helps, I also put on a lot of weight from the surgery and the steroids, I had to pack in my job which didnt help as it meant I was very inactive. I have since learned to swim to help with this as in the water I am almost the same as everyone else. I joined a slimming world group and have up to now managed to lose 3 stones, I feel very well. I only mention the weight as no one told me the surgery could have this result. Most of the ladies I had my treatment with made a full recovery, which is what I sincerely hope for you. So just take each day as it comes, talk to your doctors about your side effects, I had  constipation and thought that all I had to do was take a laxative, but the chemo used to stun my bowel so it stopped working for the first week after the chemo then would start to work the second week. I only found this out by talking to the nurses and doctors, so it doesnt matter how daft you think the question is please ask them, as non of us has been on this journey before so we dont know what to expect at first.

I hope you treatment goes well and that you are one of the lucky ones with few side effects.

Take care and god bless

Ann xxx

Hello Ann,

Thanks for your reply and for your kind words. Everyones advice has been so helpful on here, and it makes me feel settled knowing other people have experienced similar effects to me. Starting this chemo has scared me so much, and I was so ill at the weekend I really couldn't face the rest of the treatment.  I still can't take it in that this has all happened to me. The consultant has offered me a councillor, which I'm having a think about.

Anyway, well done you on your weight loss!! That's a great acheivement. But not good about your feet, ouch. My feet haven't been affected so far, just my fingers. I'm mentioning it to the hospital tomorrow. But I admire how you have dealt with it all. I know it couldn't have been easy to have to give up work. It is a tough old journey, but reading what all you ladies have been through and where you are now, makes me determined to get through this.

Take care & thanks again,

Sarah x

Hi All,

Stressful day today, my wife finally plucked up courage to have a PICC line fitted, and today was the day!

Unfortunately they spent over an hour trying to fit it without success, because her veins are so small.

They're now putting her forward for a Hickman line next week, which sounds awful! any experience of these?

So now she is very sore and not looking forward to having a tube hanging out of her chest, but if it's for the best.....

Best wishes,

John

Hi John

I had a Hickman Line and it wasn't too bad having it fitted.  A lovely staff nurse held my hand all the time and with the help of local anaesthetic, you don't feel anything but some tugging and pushing.  It was the best thing to happen to me.  No more needles or hunting for veins!!  All blood test, transfusions and chemo (and medication as I couldn't swallow) went via my Hickman.  I was loth to part with it.  The tube site has to be dressed regularly (which I dreaded but it was painless)  and the tube has to be flushed through fairly often.  This is also a painless procedure which you can either do yourself or a nurse will do it for you.  Occasionally the tube entry site can become a bit sore apparently.  Luckily, although my Hickman was in place for many months, I didn't have any problems at all.

Do reassure your wife she'll be fine and the staff will see the whole thing is carried out as gently as possible.  Prodding about for veins is a horrible experience and only adds to all the trauma this hateful illness brings.

I am quite new to this site but having suffered a serious cancer myself and also nursed my father with the same condition, know what it's like to be a patient and carer and the distress both bring.  Keeping positive can sometimes be impossible so don't be hard on yourself if you have a "down" day.  We should all be proud of ourselves because we "manage" and when there are times when we don't, the wonderful people here can support and help.

Let me know how things go along and I shall think of you both.

Carrie x  

Hello Carrie,

I have just read your message and you sound like myself as in I had my Mum pass away with cancer 3 years ago this year. The day before my birthday little did I know what was in store for me. But to be honest as I have said before there are worse things than cancer.

I hope John that this information that Carrie has passed on is a comfort to you and your wife. I think having the dreaded needles in your veins is very painful when they start to shrink.

Good luck anyway. xx

Hi Carrie, Eileen & Dot

Thanks for putting my mind at ease, I read and it sounded terrible! So it's nice to hear a good experience.

Mary looks at it as yet another procedure to endure! But she's only had 5 of 18 weekly treatments so it's only going to get harder finding veins.Her hair is thinning quite a lot now so that doesn't help matters.

Anyway, I'm taking her away for the weekend, hopefully a well timed break in the Cotswolds

Hope you are both doing ok,

John

Hi John,

That's were me and David are thinking of going to. I am in Pembrokeshire which is beautiful but the Cotswolds is suppose to lovely...

I hope Mary is up to going.

  Love Eileen xx

Hi John, Hi Ladies!

John I'm so sorry to hear of your wifes problems with the PICC line being fitted. I know my boss has a Hickman line, but I don't know much about it. Carries advice seems pretty helpful though, so good luck for next week I hope it goes smoothly. Hope you both enjoy your weekend away.

I spoke to the nurse yesterday and she has advised me to get vitamin B12 from the doctor for the neuropathy - has anyone heard of this or taken it & does it help? Also been told the anti sickness Ondandestron would have caused my constipation so to take lactulose the week of my chemo! Other than that my aching and pain has gone and I've had no sickness. Apart from feeling tired I'm doing ok!

Take care everyone,

Sarah x

ps I'm gonna try and get a picture on!

Hi Ladies,

We had a better day today, I felt I was less than supportive to Mary yesterday, I was frustrated about what happened at the hospital, we both were. Nobody's fault, just one of those things. The hospital staff have all been lovely so I feel a bit bad about feeling this way.

Mary is coming to terms with having the Hickman line now, it's not great, but it's going to be less traumatic in the long run.

@Sarah - Mary has more success with senokot than lactulose when she needs something, maybe worth trying if it doesn't work. Glad you're feeling a little better.

@Eileen - See you in the cotswolds!

Thank you for your support,

John