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 Eileen,

We were never told about drinking lots of water, but of course it's always a good thing to do. Our daughter always tells us we don't drink enough of it, but then she's always busting for a pee!

Apparently, alchohol is ok with Ovarian Cancer according to http://www.sciencedaily.com/releases/2008/01/080122101945.htm  Thank goodness for that eh?!

John

PS - Strange that you're all Cancerians! Mary feels her cancer was fate!

Hi Everyone,

Hope you are all well.

Sharon - I hope you are doing ok after your Chemo. Glad the cold cap was ok for you. I have lost all my hair now, just before 2nd cycle, which I had yesterday. Wearing my scarves and bandanas and feel great about it! I don't feel people looking or staring at me, and I'm carrying on at the gym as normal and loving it. Went to aqua aerobics today with a little swimming hat on, no one bothered! And my boyfriens has taken it far better than expected so it's made us much closer.

John - How's Mary getting on? Hope she's still feeling good. And how are you?

And hope you other ladies are getting on ok x

I am waiting to see if I feel bad again after this cycle, but now I know what to expect I'm ready for it this time!

Love to you all,

Sarah x

Hi Sarah, not feeling my best at the minute.had the lovely side affects! stuck to the loo for a day!

really tired now my feet are killing me and im really not sleeping.glad you feel ok now about the scalfs

and bandanas guess i wont be far behind you!.thanks for telling me about those bandanas online some

really trendy ones! glad your boyfriend is feeling better about things now my partner feels the same didnt

cope very well when we went to collect my wig its a big shock for us all.

take care  sharon xx

Sharon, I'm sorry you haven't been too good, My side effects only lasted 3-4 days then the last two weeks I was absolutley fine doing normal things. Looking forward to a couple of glasses of wine next week, when I've finished my steroids and stuff!!

Take care & no probs about the info, I've got loads of really cute bananas & zandanas!

Hope you feel better soon x

Sarah.

Hi Sarah,

Good to hear from you. I'm really surprised at how fast you lost your hair! Mary is into her 3rd cycle now and has lost about half of it. I would be interested to know how your cycles are scheduled and how long the treatments last. Mary is on the new dose-dense regimen, which means that she has a lower dose of Taxol, but goes every week (about an hour), but Carbo is given 3 weekly (about 30 mins) at the start of each cycle. I know the dose is calculated on height and weight etc, so differs a bit for everyone. I just wondered if spreading out the Taxol doses may be helping to reduce some of the side effects.

@Sharon - sorry to hear you're still not feeling great, hope things improve soon for you. I see that you have been through this before, what happened last time? did you have any surgery? Is your treatment regimen the same as last time? I'm sorry that you're having to go through all of this again. Apologies if you have already explained it all before I got here.

Best wishes to everyone,

John

PS - I'm glad it's not just us on the vino!

Hi John,Mary.still feel under the weather today.slept for hours this afternoon!'yeah i had surgery 09.

went in to have total hysterectomy because i had ct scan and there was somthing showing on my

ovaries which they said was a cyst! wasnt till after the op that we knew what is was a shock i can tell you.

so then i had 6 cycles of carbo.[didnt feel to bad with that.] than in may last year after routine check up and

ct scan there was a gremlin showing!.so they have been keeping a eye on me since then had another scan jan.

not changed since the last one.but they decided to start me on carbo/taxol this time.didnt have op at hospital

im at now had loads of problemsat previous one.thats why we moved. my oncoligist now seems to think that theres

a chance somthing was left behind after the surgery hence thats why im back to square one!

best wishes sharon.xx

Hi Sharon,

Thanks for your reply, I'm going to waffle a bit more now, I know some of you ladies are feeling rough at the moment, so just ignore me until you feel better.

It sounds similar to what happened to Mary, she was diagnosed with a large ovarian cyst, we thought it would just be surgery to remove it. When we returned to the consultant after a CT scan and blood test, we sat there shell shocked when in 5 minutes he told us what they had found, and that he recommended full pelvic clearance and splenectomy! As it turned out, the histolgy showed that the lesions in the spleen were benign, but they couldn't take any chances. I still can't believe this is all happening, it feels a bit surreal.

Mary had an hour of Taxol today and was fine apart from the usual tiredness. Then I made her a lamb curry followed by ice cream, an hour later she was in the loo bringing it all up! First time she's felt really sick, I think the curry was a bit greasy for her, she's always had a sensitive tummy.

Going to a party on sat, so hopefully she'll feel better by then.

Best wishes,

John

Hi John

Bless her heart, I couldn't face curry with chemo so ended up with a curry free 4-5 months Get the impression that the Taxol spead into small doses has a lot less side effects than once every 3 weeks. You both sound like your coping with it all, is Mary glad she has the Hickman line now?

Sharon, hope you feel better soon, the tiredness is accumaltive and a total pain! makes me feel like the TV ad - busy doing nothing  its early stages for both you and Mary but you'll get there!

Eileen, dot and all the others hope your keeping well and no news is good news.

Have my 3 monthly check tom but feel good (better than first time round) so am hoping it'll stay away longer this time! came back a week after the appoinment last time so fingers crossed............. again!

Take care

Love to all

Jackie xxxx

Hi John & Mary,

Well John sorry to hear Mary was sick after your curry Better change the chef ha ha ( only kidding ) Prob was the lamb and they told me to stay away from spicy food. I too have a dicky tummy not as in being sick but rather bowel ( sorry too much info ) Anywa hope you are ok for party I couldn't have even thought about a party when I was on the chemo...

Jackie lovely to see you back again, you sound in good spirits hope you continue to keep well.

I am still so tired at night and have to go to bed about 10pm but I am doing more in the daytime and getting up early....

Rose where are you ? hope everything is ok with you

Dot I send you xxxxxxx and hugs...

Sharon, Sara and anyone I have left out keep smiling....

      Love Eileen xxxx

Hi all

Had my 3 month check up, the lymphs in my chest haven't changed and they were pleased with that, my tumour marker is 8 .......yay......another 3 months rest for me then blood tests, Doc said she would have to discuss whether I need another ctscan after that, all news was good. She checked out my swollen feet and hands and didn't have a clue why they should be like that, because my blood test results were good, from the hospital and my own doc, she saw no reason for concern, great help when I am wobbling around like a weeble teehee.

Jackie and Eileen hugs xxx, it is good to see your posts and everyone else out there too. I haven't been on the computer much as I was told to keep my feet elevated, have you ever tried to type with your feet up in the air, putting my feet up on my desk was just not lady like hahaha.

Rose I hope you are doing good, big hugs for you too xxx

Keep strong all.........Dot xxxx

Hi all

Had my 3 month check up, the lymphs in my chest haven't changed and they were pleased with that, my tumour marker is 8 .......yay......another 3 months rest for me then blood tests, Doc said she would have to discuss whether I need another ctscan after that, all news was good. She checked out my swollen feet and hands and didn't have a clue why they should be like that, because my blood test results were good, from the hospital and my own doc, she saw no reason for concern, great help when I am wobbling around like a weeble teehee.

Jackie and Eileen hugs xxx, it is good to see your posts and everyone else out there too. I haven't been on the computer much as I was told to keep my feet elevated, have you ever tried to type with your feet up in the air, putting my feet up on my desk was just not lady like hahaha.

Rose I hope you are doing good, big hugs for you too xxx

Keep strong all.........Dot xxxx

Hi flower,

Great to hear your news Keep up the good work.Annoying about the swelling though.What about compression garments,would they help?

Hello to everyone else.

Rose xxx

Hi All

Good to hear from you Eileen, Dot and Rose (others to of course but these were the originals!)

I've gone from sleeping for 4 hours a night to 91/2! but hey at least I can do more and more during the day

Like Dot I've just had my 3 monthly, bloods all normal (fist time ever!) CA125 lower than at any point last year so fingers crossed gonna last longer this time, told him I had no intention of getting it back as quick this time but he didn't look convinced I do so love proving him wrong! Am a tad fed up at the mo as have had 4 colds since January and now a UTI (urinary infection) these things are not allowed during my precious 'well' time, fortunately I've not felt ill with them but do wonder if I would feel less tired without them! In the last week hair has grown to a point where it is simply short, its not gone curley this time but has a pronounced wave in it! very grey but that should calm down in time (post hair cut I suspect!). Need a decent head of hair as need my passport renewed and refuse to have a picture of me bald for the next 10 years

Dot love the vision of feet on desk and typing! I have my feet up and type all the time.............. I use a laptop

Take care

Love

Jackie xxx

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 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 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 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