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,

Lovely to hear from you, I hope your next Hospital is better than the first one.

Everyone seems to be trying yo lose weight or put it on. I want another 1/2 stone on and get to 10 1/2 as I am 5ft 7 . I want it on my face but it never works like that. I also would like a face lift ha ha but hey ho we are who we are and as long as we are free from this illness we are lucky....

Keep us informed with your treatment and Happy New Year ..

  Love Eileen. xxxxx

Hi Sharon it is good to see you post. Sorry you are having problems with your hospital, I had a problem with mine too but got it sorted eventually, not something you need!!

We all need to stay positive that is for sure, it won't be long now for your ctscan, all will be good I hope!!

Dot xxxxxxxx

Hi Eileen, i do hope hope so my son was in there last year and they really looked after him

so i think il be ok.its not so close as my local but i feel happier with the move dont know if you

would see it on the news im your area but my locals always on there! lots of complaints not good.

take care. love sharon. xxx

Hi Ladies

Hope the lack of activity on this thread means things are going well and your all getting back to 'normal'.

Thinking of you all on a regular basis!

Lots of love

Jackie

Hi Ladies, just to let you know im still in the land of the living!.hope your all well ive now changed hospitals

went for my first visit last week so far so good.got to go back in 2weeks to discuss treatment ie surgery or

more chemo. [little gremlin showing on my ct scan!] good news was my blood counts dropping but

slowly.anyway l will keep you posted.love to you all. sharon[julygirl58] xxxxx

Hi Jackie good to see you post, I have been waiting for tests to come back for a pain I had in my back, my doc has suggested antibiotics as she thinks all the rest has been attended to by the hospital. Apart from that I feel fine lol.

Eileen I hope you are well, not heard from you for ages, thinking of you too Rose.

Hugs to all xxxxx

Hi Sharon, glad you have sorted out the hospital situation. Hopefully they can sort out the gremlin for you without too much worry, let us know how you got on. Blood count going down is great, even if it is slow

Hugs Dot xxxxxxxx

Hi Dot, hope alls well with you ive got to go to hospital thursday t see what they have decided to do

ie.surgary or some more chemo dont really fancy surgery again if im honest

ill keep you posted.take care sharonxxx

Hi ladies just to say pleased your all ok

I am going back to work tommorrow on a phazed return.Got my check up 16th feb fingers crossed all ok.

Still not able to do much ie lifting and have trouble with my hip but have an xray on monday to see if its anything or not.Good luck to you all

Best wishes Liz xx 

Hi everyone,

like Jackie, I am hoping you are all getting on with your lives and doing good.

Sharon how did you get on at the hospital, have they made any decisions yet?

I have to be honest and say I wouldn't want any more surgery or chemo either, but we have to think about what is best for us.

Dot xx

Hi everyone,

like Jackie, I am hoping you are all getting on with your lives and doing good.

Sharon how did you get on at the hospital, have they made any decisions yet?

I have to be honest and say I wouldn't want any more surgery or chemo either, but we have to think about what is best for us.

Dot xx

Hi Ladies,

Sorry I have not been on for a while. Anyway I went to see my Dr last Wednesday and he was pleased with me. I have to go back every 3 months now for blood tests. I am beginning to feel better everyday and I am so glad the chemo has finished as it really floored me. Jackie, Dot, Rose, Sharon, Liz, and if I forgot anyone sorry....I hope we all keep in touch still and we continue to keep healthy..

Love always Eileen. xxxxxxxx

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

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