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 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

Hi Eileen, and all you other lovely ladies out there hope your all well.

ive been to hospital today start my chemo next friday.just wondered

if you can give me any advice on cold cap as i can try one if i wont to.

heard a few stories so really dont know what to do.also met the hospital

hairdresser to discuss wigs!.now all i have to do pepare myself for all this!.

hugs and xxxxxx to you all sharon.

Hi Sharon,

Try not to worry about the hair thing, I know some really hate the fact that they are losing hair but it does grow back..

I have not heard of anyone who has had the cold cap but have read about it. As for the wigs then I personally couldn't wear it. It was hot and looked like a wig so I wear scarves which you can buy online and if you get different colours then you can match them with what your wearing..

Good luck with the chemo  keep your positive thoughts and if you need any advise then don't be afraid to ask the Doctors..x

  Lots of Love Eileen xxxxx

Hi Julie,

           I was never offered a cold cap, I just accepted that I would lose my hair. I had it cut short before I started my chemo in preperation for the fall out. I was fitted for a wig which was as near to my own colour and styles as he could have got. Some people get something completely different from their own hair, so if you fancy being a bit of a devil try a different colour or style try loads on before choosing.I told them all I was going to go blond and look like Diana Dors ( for the younger ones of you this might not mean much ha ha). Also as some of the other ladies said I bought lots of bandanas in different colours, to go with my clothes. When my hair started to fall out big time I got my hubby to give me what he called an american marine hair cut, which is straight over the top with the electric shears, right down to the wood. It was a bit of a shock at the time, I got a shock when I looked in the mirror, I couldn't decide who I looked most like, my dad or my son, but then again they both look alike.

After a while I didnt wear anything, as sometimes the wig got rather warm, that was once everyone got used to my condition. The hardest was telling my grandchildren, the youngest was just a baby, so I wore my wig if her mammy brought to our home. The next one was 7 years old, when I explain to him that I was having to take special medicine which would make my hair fall out, I said I will get some scarves,he look at my like only a child can and said, I dont think so grandma,I said well bandanas then, he said you will get a wig wont you, it amazing how resilient children are. He wait a few weeks until my air had fallen out, then bought me some bandanas on his holidays, when he gave them to me he said gran have you really got no hair? So I asked him if he wanted to see, he nodded so I took my bandana off, he just said wow you have even less than grandad. So its best to prepeare them before it falls out.

Everyone has to do what makes them happy, if you feel you want to give the cold cap a go, then go for it, you have nothing to lose have you, if it doesnt work at least you have tried. My hair grew back very dark and wavey, from auburn and straight as a poker. It s not as thick as it was but it is lovely just the same, when it first came back in it was oh so soft just like baby hair.

Well I wish you all the best with your decision on the hair front. Just keep telling yourself it only for a short time it WILL come back. xxx

Hi Sharon,

We were told that the cold cap can be quite painful and there is no guarantee that it will be effective, so Mary decided not to go for it based on this.

With regard to wigs, our hospital expected us to chose a wig from a catalogue, but we decided to go to a shop so she could try things on. And with the benifit of hindsight, you would be very lucky to choose a suitable wig by looking at photos. The hospital should give you a list of places that supply NHS wigs, private wigs, or both. Mary got an NHS one and it looks brilliant! She hasn't started wearing it yet, but her hair is getting thinner now so it won't be long.

Also, she opted for some lightweight beanie hats as opposed to scarves or bandanas, she prefers that look but of course it's down to what you like personally.

Best wishes,

John

Hi Sharon

The fist lot of chemo I wasn't offered the hat as the taxol/carbo combo would 'definately' cause the lot to fall out (which it did!) the second time I was treated with Doxitol/carbo, less hair loss so was offered it but as I had already been bald I descided I couldn't face a freezing cold cap on my head. I suggest you talk to the nurses when you go for chemo and ask how sucessful its likely to be (you can always say you don't want it on the day but they do need to know in advance if you do want it). Like the others I started off with a wig which i never worn and bandana's which i did but only cos it made others more comfortable. I never worn anything around the hourse and eventually started going out without anything as well, second time round I didn't bother with anything at all except for a woolly hat when it was cold or going round air conditioned shops!!!! I would advise waiting on sorting the wig if you can (or anything else fitted) as I found mine quite loose once the hair had gone, it was also comfortable when i tried it on with hair but definately not once the hair disappeared! Good luck with your chemo and just post any questions as they crop up, somebodys bound to have an answer. Be aware that chemo does very funny (not) things to your memory but like everything else it settles down in time.

Good luck

Jackie

xxx

Thanks to you all for the advice on the cold cap.think i might give it a go.

if its to painful or doesnt seem to do anything well at least ive tried it!.

gonna get my photo on here while i still have hair! dont think ill ever be

has brave as you Eilleen and Jackie not wearimg anything!! anyway will

keer you posted on the chemo [and the hair!] lots of love to one and all.

sharon [julygirl58] xxxxxx

@Jackie - Re wigs and headwear, what you're saying makes sense and I guess we're about to find all this out. If you've ever worn a party wig or a hat  for any length of time, you'll know that they get hot and uncomfortable, so I guess even a decent wig would feel much the same.

@Sharon - As Jackie suggested, it may be worth talking to your oncology nurse before making your decision, if you're having Taxol, the cold cap may not have any effect at all. You may want some professional reassurance before putting yourself through that.

Best wishes,

John

@Jackie - Re wigs and headwear, what you're saying makes sense and I guess we're about to find all this out. If you've ever worn a party wig or a hat  for any length of time, you'll know that they get hot and uncomfortable, so I guess even a decent wig would feel much the same.

@Sharon - As Jackie suggested, it may be worth talking to your oncology nurse before making your decision, if you're having Taxol, the cold cap may not have any effect at all. You may want some professional reassurance before putting yourself through that.

Best wishes,

John

Hi John, thanks fo the advice i am going to be having taxol.and ive heard these cold caps

are very painfull so i will speak to the nurse before hand.thanks again good luck and best

wishes to you and your wife.sharon x

Sharon a few of the women used the cold cap when I was having chemo, they said they were cold and were given blankets but none said it was painful. I opted not to have it because it adds longer time on to the treatment.

Speaking to the nurse is a good idea.

Big hugs

Dot xxx

Hi Everyone,

Hope you are all well? Just wanted to wish Sharon good luck for the first chemo, I'm sure everything will be fine. All the side effects that I had in my first week have all gone and I've had 2 weeks of feeling great. I started at the gym today and am going to join a running club on Saturday!

My hair has started to fall out, just a little in the shower. Haven't had to shave my legs and underarms since Thurs though so I'm gonna take that as a plus that I will save on shaving stuff!! The hair loss is freaking me out, but I have scarves and zandanas on standby. I think my boyfriend is scared about it too. I do feel selfish that I haven't asked him how he might feel about it, but I just need everyone around me to stay positive and happy.

I have my next chemo Tues 8th.

Anyway, hope everyone is ok.

Love Sarah x

Good call Sarah!

It's an anxious time going for your first treatment, good luck Sarah, let us know how you get on, I'm sure you'll be fine.

A quick update from us. Like you Sarah, Mary is losing her hair now a little each day in the shower. It's not as dramatic as we thought it would be, but I can see when I come home from work that it's a little thinner each day. Apart from being tired in the evening, she is still feeling pretty good, so that helps. This is a difficult stage (especially for women) to deal with, guys can just shear their heads and nobody would give them a second glance! I'm a baldylocks anyway, but Mary won't let me try her wig on incase my big head stretches it!

She will be having her Hickman line procedure this week and starts her 3rd cycle of treatment on the same day. Hopefully it will go successfully, with 12 weekly treatments left it could get quite traumatic finding a vein if they cannot fit the line.

Best wishes to you all,

John

Thanks Sarah ive got my pre assesment at 9.am tomorrow then the chemo on friday.

im not so worried about the chemo ive been there before! but didnt loose my hair.

thats freaking me out! and my partner isnt taking to it very well.anyway good luck

with yours keep me posted.love and best wishes sharon.xxxxx

Hi everyone

I will be thinking of you all, if it is any help my hair grew through as it was falling out, my last chemo was December 3rd and my head is covered with hair again, even though it is short lol.

I have been having a few problems this week, I have felt light headed and have swollen hands feet and legs, my Doc has taken blood tests, first thoughts were blood pressure but it is normal.

I was supposed to have a 3 months break but it is only two and a half and my ctscan is tomorrow, just as well with how I am feeling. The following Tuesday I am back to the hospital for the outcome of ctscan.  My Doc is hoping I have the results back so I can take a print out with me.

Back on the magic roundabout lol.

Big hugs all, stay strong

Hi Dot & Ladies

That is funny about the lightheadedness as I have been like that for months now. I thought it was my blood pressure but it isn't.

I am just so tired all the time, I get up tired and go to bed tired...

Hope everyone ok .....Weather improving anyway which is good..

Eileen. xxxxxxxxx

Hi Dot and ladies, good luck wih ct scan hope its all good for you.ive been to my chemo

unit today they all seem very nice really explained things to me more then the other hosp.

showed me a cold cap looks more like a cycle helmet! but im happy to give it a go.

yeah the weathers starting to change dont know about you but i love the spring.dont

know if il be doing much in the garden this year maybe leave it to the othe half!.

anyway take care all love and best wishes sharon xxxxx

Hi Everyone,

John- I hope everything goes well with your wife & having the Hickman line, fingers crossed for her it all goes to plan this time.

Sharon- Hope the cold cap works for you, but if you have problems I've found a good company online that sell scarves, bandanas and zandanas. I know it's a personal choice, but I've gone for the zandanas I think they're fab! And not too expensive. It's called bandanaworld.

My hair is falling out more and more each day, and my partner is not taking it too well either. I don't know what to say to him because I'm scared he'll go off me.

Hope everyone else is well,

Sarah x

Hi Sarah & everyone,

I don't think he will go off you, what I did was say if you picture all the women you see bald then you can have a laugh as some don't have great shaped heads...Looking at all of us I think we look great and proud to be bald.. I love it when people look at me as I think well I stand out in a crowd.

As I said to John the partners do get left out and I feel sorry for them. I also found that talking to all of you on here is a great way to offload your moans and fears instaed of harping on about to them.

Love to all. Eileen xxxxxxxxxx