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

Jackie it is great to hear your blood tests came back good!!

Hopefully no more colds for you, they can be very wearing, we need the nice weather to come now, I am looking forward to light evenings.

I have heard that being bald is in the 'in thing' lol.....I can't believe how little it has bothered me, going out wigless was the best thing for me, I do have very short hair now, waiting for it to thicken on top, bald is better than looking like Friar Tuck haha.

hugsss Dot xxxxxxx

Hi Rose,

Great to hear from you and sorry about your  cellulitis Hope you begin to improve .....

Isabella is 7 months now, it soon goes doesn't it ?

I would like to ask you and the others if any of you have pain ( not bad but a twinge ) were your ovaries were ? I keep having one on my right side were the tumour was...Plus my bladder is feeling full all the time. Any feedback would be great.

We will def meet soon Rose as soon as the weather and you improve...

   Eileen xxxx

Hi Jackie, I'm new on the forum and came across all your posts re ovarian cancer. Your story is very similar to mine and I just felt the need to contact you. I was diagnosed Dec 2009, 6 lots chemo Feb - May 2010 then full op in June. Felt great, 3 monthly checkup OK and back to work.

Then check up in Feb 2011 showed raised ca125 levels and yes its back. Just started 2nd round of chemo and am taking part in the ICON 6 trial with a new drug called Cediranib that cuts off the blood supply to the tumours, hopefully. I think you've had two lots of chemo haven't you?

Been thru all the 'why me' scenarios, feel really cheated to be fighting it again after all I've been thru (had breast cancer 16 years ago too, apparently unrelated just unlucky I guess). Scared about what the future holds and feel so alone sometimes.

Glad to know your check up went OK.

Sue

  Hi Sue

shame about the circumstances but nice to hear from you! Yes I finished my second lot of chemo in Oct, only had 8 months between 1 and 2nd lot but do feel this one may keep me going longer! The fact you are involved in a trail is generally considered to be better (closer monitoring etc) so fingers crossed this will work well for you. I have heard about the drugs that limit/stop the blood supply to the tumour but I would be excluded due to the clotting disorder I developed, never-the-less I hope the trial is successful as it would give further treatment options to many people.

The only time I thought why me was immediately followed by why not me? I'm not any different to anyone else and cancer is random, just one of those things. To be honest I refuse to worry about something I can't change, life's to short so I enjoy what I can! No need to feel lonely, just pop on here and the ladies (and 1 man!) will support you through the dark times. As to what the future holds who knows? just look at Japan and you realise that none of us know when our times up or when our lives will be turned upside down for whatever reason, I know I will probably not have to worry about old age, senility or nursing homes but in the meantime my body is not telling me I've lost the fight and till it does I live as I always have! Guess I can't cope with constantly thinking I've got cancer and I'm dying sooner rather than later, time to cross that bridge when my body starts to tell me . I refused a prognosis as in my eyes its a guess based on that doctors experience, of other people (not me!!!) and it acts as a countdown, I couldn't cope counting the months/days and thinking I've only got x,y,z, left and what about when you pass the sell by date!!!!!!!!!! It just wasn't for me and would have destroyed my positive self, I would urge anybody who is offered a prognosis to consider it very carefully.

Eileen - no I've never had any abdominal pain and my bladder has been a lot larger since the op if you see what I mean .  Can't see any reason why you should have ovary pain, but the bladder may be due to a urinary infection. have you mentioned it to your Dr? if not then I would (GP if not due for any other appointments soon).

My oncologist is now measuring my CA125 every 3 months (after the first lot of chemo he said that they don't treat blood results or scans as research had shown that the same results came from waiting for symptoms to develop). I am assuming as my symptoms are far from normal he don't trust me to tell him when they are back . Actually he's probably right as I felt we jumped in to quick with treatment this time!

Enough wandering

Take care all

Jackie

xxxx

Hi Eileen,

I had tumours in both of my ovaries and had twinges in both, also the odd twinge where the stitches are, it is always wise to check with your Doc if you are concerned. My tum also swells up all the time, but haven't notice bladder probs. It is nine months since I had my op, doesn't time fly lol.

Hugs xxxxxx

Hi Everyone,

Hope you are all ok?

I've had a pretty rough weekend, but I knew it was coming. Same side effects as the 1st cycle, aching joints, tiredness, numbness and constipation again. Oh and a horrible metallic taste in my mouth. Still I'm feeling a bit perkier now and looking forward to having a good couple of weeks ahead.

Sharon - I hope you are feeling better now? It's funny how we all get different side effects, I haven't had any of the sickness or loo probs - more the other way with being bunged up!

John - How is Mary getting on? Yes my hair fell out very fast in the end. The nurse did say it was normal for that to happen. I'm on the standard Carbo/Taxol every 3 weeks for six cycles. Then three monthly check ups after that. I had tumours on both ovaries and had hysterectomy last Nov. They say it's all been removed and this is a mop up, to make sure there's nothing hanging around.

Hope all you other ladies are doing ok, and have had a good weekend? We've had fabulous sunshine it makes such a difference.

Love Sarah x 

Hi Sue, and welcome to the forum.

I hadn't heard of Cediranib before, so this could be a promising development and I will watch with interest. I see from your post in that 25% of patients will receive a placebo as part of this clinical trial, so it's going to be difficult to know how successful it is until the results are published. But we may get some idea if there are a few patients contributing to that thread. I can understand why you have volunteered, this being your second time must of course be disappointing. It's too subjective to say why some stay "all clear" for longer than others, we all just try to do the right things (whatever they are) and hope it all works out ok. I hope that you keep posting here and keep us up to date with your experiences, and I wish you all the best with the treatment.

@Jackie - I was thinking the same as you while watching the awful news footage of the Japanese tsunami. Life can be so fragile and none of us know what is in store for us, so if you're feeling good, enjoy each day as much as you can.

@Sarah - I thought you were on the standard regimen of CarboTaxol but wasn't sure. There may be a reason that "dose-dense" is not suitable for you, but It may be worth enquiring about the "Japanese regimen" with your oncologist, it is basically the same as what you're doing, but the Taxol dose is spread over 3 weeks. Mary only has blood tests and clinic 3 weekly (at the start of each cycle).

Update on Mary - She survived my lamb curry and she felt fine by Saturday, so we still went to the party! Everyone was pleased to see her and said how good she looked. We had a few dances and stayed until the end. Got home about 12.45 and were having toast and hot chocolate in bed at 1am!! This afternoon we went out for a family meal, as our youngest son was home from Uni for the weekend. It's finally caught up with her now and she's feeling very tired, but then so am I!

This coming Thursday, Mary will be half way through her treatment. I'm hoping she will still be feeling as good by the end of it in May, as it's her 50th Birthday in July and I think she deserves a party!

Best wishes to all of you,

John

.

Thanks Jackie, it does help to know that you're not alone in all this cos sometimes thats how it feels. I try to be upbeat and positive when I'm with other people and generally I do feel that way, but then people go home and the door shuts and you're climbing the walls. I'm trying to work thru the chemo (combination of annual leave and flxible working) so hoping that will at least keep my mind off it some of the time. Just collected my new wig today in readiness for my hair coming out at weekend - if it lasts that long, I'm thinking of shaving it all off before then anyway. I will keep popping on the forum, nice to hear how other people are going on with all this!

I'm at Christies by the way - is anyone else?

John, thanks for your reply too and your wishes.

Sue

Hi Sue, and welcome i was just like you at first then i found this wonderful site with all these amazin people!.

who are always here to give you advice listen to you moan any time day or night!. so feel free.

i collected my wig last week [i thlnk thats when it hit me] see this is my 2nd course of chemo but i never

lost my hair with the first one.and ive always had a dislike to wigs so this is gonna be tough for me.

maybe il be brave and not even wear it! anyway take care where always here.

BIG HUGS.Sharon.[julygirl58] xx

Hi Sue and Sharon

Daft as it sounds Once the hairs gone it won't seem so bad! My advise is shave it now, honestly its the thought of being bald that's the worst once its gone you sort of forget about it! The first time I lost my hair I always worn a bandana or hat and it made me very conscious of looking different every time I went out (wouldn't normally wear hats anytime) the second time I gave up and just went out bald, I very soon forgot I had no hair and it worked much better for me. With the hats/bandanas I kept getting sympathetic looks, however when bald plp were unsure if I'd chosen to have my head shaved or was ill so I got treated a lot more normally which I preferred! If either of you decide to go out hatless do carry something with you, air con in shops is to much for a baldy and be careful of the sun (if we ever get any!)

Sue you sound like you live alone, I'm single though I do have a best friend/flat mate, she works full time, on one hand when she's at work it gives me time to think but as she's gone for 14 hours a day it often leaves me too much time to think!!! She also copes by not verbalising her fears and does not cope at all well with conversations regarding my lack of a long term future, in consequence we go on essentially as normal. That is why so many of us find this site useful, here we can say what we want, express fears, discuss treatments and options etc.

I am full of admiration for you managing to work while having chemo! I couldn't due to immuno-deficiency and have since been retired on ill-health which is comical really as I feel better now than when I was working pre diagnosis! I was a hospital worker so each hospital appoinment takes up a full day as I have to catch up with endless plp! I still get discount in the canteen as I'm so well recognised  . You will have bad days, we all do but then again I'm sure we had bad days pre cancer but in our minds everything pre cancer becomes rosy

Stay strong, you'll get there

Jackie

xxx

Hi Sue and Sharon

Daft as it sounds Once the hairs gone it won't seem so bad! My advise is shave it now, honestly its the thought of being bald that's the worst once its gone you sort of forget about it! The first time I lost my hair I always worn a bandana or hat and it made me very conscious of looking different every time I went out (wouldn't normally wear hats anytime) the second time I gave up and just went out bald, I very soon forgot I had no hair and it worked much better for me. With the hats/bandanas I kept getting sympathetic looks, however when bald plp were unsure if I'd chosen to have my head shaved or was ill so I got treated a lot more normally which I preferred! If either of you decide to go out hatless do carry something with you, air con in shops is to much for a baldy and be careful of the sun (if we ever get any!)

Sue you sound like you live alone, I'm single though I do have a best friend/flat mate, she works full time, on one hand when she's at work it gives me time to think but as she's gone for 14 hours a day it often leaves me too much time to think!!! She also copes by not verbalising her fears and does not cope at all well with conversations regarding my lack of a long term future, in consequence we go on essentially as normal. That is why so many of us find this site useful, here we can say what we want, express fears, discuss treatments and options etc.

I am full of admiration for you managing to work while having chemo! I couldn't due to immuno-deficiency and have since been retired on ill-health which is comical really as I feel better now than when I was working pre diagnosis! I was a hospital worker so each hospital appoinment takes up a full day as I have to catch up with endless plp! I still get discount in the canteen as I'm so well recognised  . You will have bad days, we all do but then again I'm sure we had bad days pre cancer but in our minds everything pre cancer becomes rosy

Stay strong, you'll get there

Jackie

xxx

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