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 Ladies,

I hope you are all doing ok.

Mary is now half way through her chemo after completing week 9 of 18 today! If anyone is interested in this new "dose-dense" regimen, I have updated my thread with a half-time summary: http://cancerchat.cancerresearchuk.org/message/31764#31764

Hair loss is still a big deal for Mary too, as is concealing the hickman line, but she is still feeling pretty good so can't complain too much.

Best wishes,

John

Hi Everyone,how you all doin?. im a bit down today new it was going to happen and have tried to prepare

myself for it but stills comes as a shock.my hair as started to fall out today so i reckon in a few days

il have evan less! ive had a little cry not that thats gonna stop it! but felt better after! i think today was

the day when it sunk in that i have cancer.does that sound stupid?. thinking of you all take care of you.

love sharon.xxxx

Hi Sharon

No it don't sound stupid, I think the hair loss is such a physical reminder that you can't avoid seeing that it makes the whole thing seem far to real. Sounds like it time to get rid of whats left it really isn't so bad once its gone, honest. Bad days are normal, you just have to except it and get up the next day refusing to have two in a row . As time passes it does get easier to deal with. keep logging on, vent if you need or just tell us how your feeling, we all car and we're all here for you and each other.

Here's to a good day tom!

Jackie

xxx

Sharon,

I am sorry that you have been feeling down and as Jackie has said it's a normal thing to happen to you / us because at the end of the day we are all scared and lie awake at night sometimes thinking what will happen to us. We have all probably said why me ? but at the end of the day we have to cope with it and don't let it beat us. Your mind is a powerful thing and remember that if you can stay positive then things will be ok.

I have been having these twinges as I said last week and rang the hospital so my chemo nurse told me to get my bloods done for the CA125 which I did and got the results yesterday. My count has gone up since last month so I have to have a scan on the 29th but so what if it's back I will deal with it. And if it is then I have caught it quickly.

So please remember when you are down that we are all here for you....

Love Eileen. xxx

Hi Jackie,Eileen.feeling a little better today.even more so after reading you messages of support

where would i be without you! I thank you fm the bottom of my heart.as you say eileen think positive

and you will be positive.hpe everything goes well with your scan.i see my oncoligist on thursday and

chemo on friday comes round so quick. thanks again.

love sharon.xx

Hi Eileen

Sorry to hear your ca125 was up but remember it goes up for many different reasons which is why it is an unrealible test by its self! the scan should give a more accurate picture and fingers crossed will show its not back. My Ca125 was 'up' at my 3 monthly appointment but as I feel fine we're ignoring it!

Hi Sharon

Glad your feeling better today one day at a time sunshine! Once you start on the chemo cycle time seems to both stand still and fly! silly I know but the days seem to last forever and the weeks fly past, maybe thats just me lol.

take care

Jackie

xxx

Hi Everyone,

Sorry to hear you have been feeling down Sharon, but as the other ladies have said - stay positive. We all have down days, and yes I have cried about it, why me, etc. But then the next day I pick myself up, put my make up on & a smile on my face & get on with things again! It's not easy, but we will get through it. I understand your feelings now your hair is falling out. But it will be fine. When mine came out I thought ooh I have quite a cute little head! Wasn't as scary as I thought.

Eileen sorry to hear about your CA125 result. I hope everything is ok. Keeping my fingers crossed for you x

Hope everyone else is ok? I'm fine been feeling really well this week. Next chemo is on 29th. Have an appointment to see oncologist tomorrow.

We've been busy sorting the garden this week and now it looks all nice and tidy so I'm looking forward to sitting out there on sunny days!

Take care everyone,

love Sarah x

Keeping fingers crossed for good news with the scan.You have had enough without this worry as well.Sending you a huge hug.

Rose xxx

Eileen I am glad you queried the twinges you had, hopefully the ctscan will have a positive result......everything crossed here

Hugggggggs xxxxxxxx

Hi Everyone Its been a while scince i added something to this discussion and i was the one who landed on the wronge site or mars  as i was diagnosed with uterine cancer and then thought it was ovarian.I just want to give you all a great big hug and lots of support you are all so good and strong.I am back to work on a phazed return i am tired but mentally . i think everyone treats you as normal and dont wish to ask questions in case its a bit sensitive but i am feeling fine apart from some hip sciatica type pain as we have stairs here at work.i dont know if i said when i first posted but i lost my son from non hodgkins lymphoma burkitts like and he was just 20 years old .It was very difficult for the  family but i was the one who was at his bedside everyday I know now both sides but feel the pain for him more than mine now as mine appears to be clear i only have to be seen every 3 to 6 months .Wish i could help you all but i am saying my prayers that you all make a good recovery .I know its hard god bless you all .liz xxxxxx

Hi Everyone Its been a while scince i added something to this discussion and i was the one who landed on the wronge site or mars  as i was diagnosed with uterine cancer and then thought it was ovarian.I just want to give you all a great big hug and lots of support you are all so good and strong.I am back to work on a phazed return i am tired but mentally . i think everyone treats you as normal and dont wish to ask questions in case its a bit sensitive but i am feeling fine apart from some hip sciatica type pain as we have stairs here at work.i dont know if i said when i first posted but i lost my son from non hodgkins lymphoma burkitts like and he was just 20 years old .It was very difficult for the  family but i was the one who was at his bedside everyday I know now both sides but feel the pain for him more than mine now as mine appears to be clear i only have to be seen every 3 to 6 months .Wish i could help you all but i am saying my prayers that you all make a good recovery .I know its hard god bless you all .liz xxxxxx

Hi Ladies,

I have been reading the discussion but have not had time to respond until now. I hope you are all coping ok with your individual issues and that no news is good news.

And hello to those of you who have not posted for a while and may be wondering why this bloke is posting in a predominantly ladies thread. I am here supporting my wife Mary, as she is not really into forums etc so prefers me to waffle on and pass back any useful info to her. I feel like I'm imposing a little sometimes but I hope you don't mind me bringing my contribution to the discussion, and can relate to it in some ways.

Mary took the decision last saturday to shave off what was left of her hair, and I obliged with the clippers. It was a bit of a shock for her when she first looked in the mirror, but she is getting used to it now, and it is a much better look than having a sparse head of hair. I never thought the day would come when I actually have more hair than Mary! But it's a stark reminder for her now every time she looks in the mirror (as too is the Hickman line). She has a pretty good shaped head, so that helps, and she only covers her head when we go out. She has a good selection of lightweight beanie hats, and she only wears her wig for social events. She has also bought a couple of bandanas from that site that Sarah mentioned (Thanks Sarah!) Saving these for our break in Portugal at the end of April (if she still feels well enough to go).

Talking of holidays, I got a big shock this week when I tried to renew our travel insurance, her diagnosis has sent the premiums through the roof! and some will not even touch her because she is still having chemo! Hmm what to do??!! Does anyone have any advice or suggestions on this?

Good news is, Mary started her 4th cycle today and the registrar is very happy with her bloods, her progress, and particularly how little she has suffered from side effects. He obviously cannot predict the chances of it curing her as there are too many variables, but his positive response does give us a bit of hope all the same. He said that they were giving her this "dose-dense" weekly treatment because they felt she was young enough and strong enough to cope with it. I don't really understand that, because it seems to me that having a massive dose of chemo every 3 weeks would be harder to cope with than spreading out the dose weekly. I wish I'd asked him about that now as I'm curious, I shall have to ask our oncology nurse next time we speak to her.

I really don't want to give anyone false hope, but I do think it is worth discussing this treatment with your oncologist (if the time is right) as the clinical trial results were very promising. More info in my thread

Best wishes to you all,

John & Mary

Hi Liz,

good to hear from you!

It must be really hard getting back into work, I admire how you are dealing with all of this.

You have gone through a lot Liz, to lose a son so young and then to find out that you also have to deal with it is a devastating blow, big hugs, it is a hard place to be. I hope that all your scans stay clear and that you find some sort of peace.

Dot xxxxxxx

Hi All

Hope you are all doing well at the moment. John if you do a serch for holiday insurance on this forum you will get the info you need. If I remember rightly there are a couple which will insure without chargeing the earth! Glad Mary's treatment is going well, as the weather heats up she will probably like the scarfs etc less and less! Now her hair has gone tell her the worst is over! Can't speak for theothers but have no problem having a man on board, add a different perspective so hang in there mate.

Take care

Jackie

xxx

Hi Everyone.hope your all ok.john and mary first may i say its good to have a man on here who

knows what were goin through keep up the good work.! i to have lost my hair now cudnt believe

how quick it comes out  saw my oncoligist yesterday think she was shocked to see me in a scalf

last time i saw her i had a full head of hair!.had my second chemo today went ok till my canulla came out

blood everywhere! a bit of excitment on the ward! just waiting to see what side affects i have this time.

take care love to you all.xxxx

Hi Jackie and Sharon,

Thanks for making me feel so welcome. I know many here are having a hard time with one thing or another, and I sometimes feel a bit bad about banging on about how well Mary is doing. But I just want to share with you what she is doing and how she is feeling and hope that it may be helpful in some way. I just cannot understand why none of you have been offered the new "dose-dense" treatment, but then maybe Mary would have coped well with the standard treatment also, who knows?

Re-hair loss, You are right Jackie, Mary seems less and less concerned about people seeing her hairless, certainly when they come to the house. She hasn't dared to go out uncovered yet but maybe she will in time. Thanks for directing me to the holiday insurance page, I also started a thread on this and got some good replies -

Sounds like you caused a stir on the ward with your canula Sharon, must have been a bit scary! Your hair came out much quicker than Mary's, her's was very gradual and we only shaved the rest off last week, after cycle 3C. I hope you respond well to the chemo and don't suffer too much with side effects.

Best wishes all, have a good weekend,

John

Hi Sharon

Hope you cope as well this time as last time, shouldn't be much different thought the tiredness is accumulative.

Hi John

The dose dense treatment is not 'nice' guidelines and therefore will not be offered by most places. If research and further investigation by NICE conclude it is more effective then it will become standard. You are lucky in that either your consultant keeps up with new treatments and/or is willing to ignore the NICE guidelines. Mine thinks its a bible, have told him if he says 'well the book says' once more I'm gonna hit him lol, so far I've not done anything by the book so why would the book treatment suit me! Having said that my last lot of chemo was carbo/Doxil so I don't think it can be done that way anyway.

Keep well

Jackie

xxx

Hi Jackie,

Yes, Mary is fortunate enough to be under a professor who is one of the country's most pioneering oncologists.He is the Director of Ocology at the hospital and has written books and given seminars around the world. His research and trials are changing the way that other professionals think about treatment for gynaecological cancers.

I have been doing a little bit of searching on the net re "dose dense", and it seems that the treatment has been proved to be more successful in terms of survival than conventional treatment. However it is more toxic, and therefore some patients had to abandon the treatment. (Mary must be very tolerant to it)

NICE say it can take up to 18 months for them to approve drugs and treatments (that's a long time for a cancer patient), but they are also there to ensure that all patients are entitled to the same drugs and treatments (i.e.not a postcode lottery).

Now I don't know about you, but my primary reason for being on this forum is to receive and offer help and advice with others. And while it's nice to have a light hearted chat too, I want Mary to survive this awful disease and I am keeping an open mind to everything, even some of the whacky and off the wall things I have read here.

So I would say go ahead and hit your consultant! preferably over the head with the NICE guidlines! LOL.  And if you want to consider having new treatments, demand that they are discussed and offered if suitable. Mary hates it when I ask too many questions at clinic, but this is her best chance of a cure and I want to make sure that they, and we are doing all we can to get the best result possible.

>off of my soapbox now<

Best wishes,

John

Hi everyone Hi John,

John I've just dug through my 'stuff' given by the hospital and they wrote down a travel insurance website for me. It was set up by someone affected by cancer and aims to give a reasonable quote to cancer patients. Haven't had a look at it yet, but it's www.insurepink. Hope it's useful I will be looking it up for my holiday. Just to ask also if you don't mind? Mary wouldn't be under Prof Kehoe by any chance? Sounds like a similar man that I was referred to!

Anyway hope all is well with everyone, I've just had my bloods done for my Chemo tomorrow. Pain killers on order ready for the pain, Oh god! 

Take Care,

love Sarah x

Hi Sarah,

Thanks for that, insurepink was one of the insurers recomended by someone in my thread   Looking at their site today, it implies that they are for women with breast cancer. Anyway, I took down the number on the site for travel insurance and gave them a ring. The recorded voice offered me only motor or house insurance, I pressed option 1 thinking they may then put me through to the right department. I waited for about 5 minutes as all the operators were busy, then hung up. I figured that I would probably have this delay every time I rang, and I wasn't even sure if I was ringing the right number, so have crossed them off my list

I am sending you a private message re the professor, so look out for it in your inbox.

Good luck with the chemo tomorrow, I hope you have a better time of it this time around. Having read a bit more about "dose-dense", apparently you have more Taxol (not the same as I thought) as standard treatment, but the dose is spread out weekly. That's why it is more toxic, I guess Mary is perhaps more tolerant to it than some.

Best wishes,

John