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 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

Hi everyone,

It seems we're all having some issues or anxieties at the moment, it's good to be able to share stuff on the forum and compare experiences. Although we may all be affected slightly differently, there are some common issues. I love the way that everyone is supportive to each other here, it helps being able to get things off of your chest knowing that everyone is listening and are sympathetic. Sometimes, a little bit of info from someone can make a big difference to someone else, so I hope you all keep posting.

@Sarah - Thank you for your comments, Mary has her Hickman line procedure tomorrow, and will commence her 3rd cycle immediatly afterwards using the line, if all goes well, I'm sure it will. Regarding hair loss, Mary's hair is getting to the stage now where people are starting to stare when we are out. I don't really know what to say to her. I kind of feel she should start covering her head now, but it could sound harsh and unsympathetic if I said that. It's a very difficult issue and I'm afraid of saying the wrong thing and upsetting her. Maybe your partner is struggling in this way, and you're possibly interpretating it all wrong. I'm sure he is not going off you.

@Sharon - Good luck with the cold cap, I hope it does the trick, do keep us up to date with that.

@Dot & Eileen - Hope you are feeling brighter soon, we were told that the tiredness is acumalative with each treatment, I guess other side effects can be too.

Best wishes,

John

Dear john

I hope the hickman line went ok.I dont know if mary already has this information but i went on one of the look good feel better afternoons www.lgfb.co.uk.It is free and you leave with a big bag of makeup.It is subsidised by the make up companies.You get a lesson in a small groupe about make up and false eyelashes and fake eyebrows ect.For me it was good not so much because of the make up ,althrough that was nice,it was seeing women with cancer out of the hospital context that was invauable.It made me at least a bit self consious about how i look as i realised that if i had not seen them in that context i would not have known that they were sick.

The other thing i throught i would say is i deal with the looks by just blanking them out.I am not brave enough to go bauld ,i  go for the head scarves and the hats for various reasons i have never got on with wigs.It was not untill my sister commented on getting looks that i gave it much throught but i realised that the people who noticed i looked different were probably the ones who had been affected themslves by cancer directly or indirectly.It is not unkindly ment.I find myself noticing people who i reckon are in the cancer gang in a way that would have passed me by before.

Hi Ladies,

We spent a very frustrating day at the hospital today, we were told to be there by 8am so had to negotiate the rush hour traffic, and felt bad about being 5 minutes late. Mary eventually had her procedure at 12.30!! I felt so frustrated and angry about the hospital being so disorganised, but how can you complain when all of the nurses are so lovely? It's not their fault, just the procedures that they have to work to. I'm sure this sounds familiar to many of you.

The good news is, the Hickman line went really well and not at all the ordeal that we imagined it would be. Mary is absolutely exhausted from the procedure pre-meds, followed by the chemo pre-meds, and of course the chemo itself. She is in a deep sleep on the sofa as I write. It's not ideal having a line hanging out of your chest, but it is going to make the remaining 11 weeks of treatment so much easier. We had a few tears tonight, but I think a lot of that was due to the amount of drugs she's had today.

@Grumpy - They have a "look good feel better" workshop at the drop in centre in the hospital grounds, and Mary put her name down for it a few weeks ago. There is a long waiting list as it is so popular, but she will eventually enjoy that. Worth mentioning though as some of the other ladies here may not know about it. Thanks for your take on dealing with hair loss, the next few days are going to be tough for her, so any advice may be helpful. By the way, did that lady (tenbob) give you any advice on my thread She had her own wigs business, but I haven't seen her for a while.

I just found out that it's the Marie Curie Daffodil day today, Mary would like one of the pin badges, now you'd think they'd have them at a specialist cancer hospital wouldn't you? I looked all over the site while she was snoozing, and nothing. I found out that our local florist is doing them, so will get one tomorrow. For now, I have changed my avatar!

Best wishes,

John

Hi John,

Hope Mary is feeling better today ? Yes I am afraid you do have a lot of waiting around at the hospital. Sometimes it's for pharmacy to send medications up to the ward or waiting for bloods to come back it is sp draining as well for both of you as it makes you tired just sitting about.

I like your new picture, are you in to photography ? My partner is and has just bought another new one yesterday ...

Don't forget about drinking plenty of water, you can have the red wine. Actually I had a drink as the Dr said it won't do you any harm...

Keep us posted and love to Mary.

   Eileen. xx

Hi Eileen,

Yes, Mary is much much better today, we have been out shopping and she wore her new wig for the first time! She looks really good in it, it's like having a new wife! Great news, the town centre was full of Marie Curie volunteers selling daffodil pins, so we finally got one for her!

No I'm not really into photography, I stole the daffodil image from the Marie Curie website, it's about the best one I could find.

You never did explain about having to drink lots of water, we both enjoy a glass or two of wine! Is that bad for her, I don't know.

Just started on her third bottle of liquid iron, I'm convinced it helps her but it's all subjective I guess, certainly can't do any harm.

How are you feeling now? Hopefully a little less tired.

Best wishes,

John

Hi john and Mary, just to let you know l survived the cold cap!.wasnt as bad as i thought.

see you had ectic day at the hospital know what you mean weve just changed hospitals

so we had to leave a 7.30 for 9.am appointment because of the traffic nightmare!

but i did get called in soon as we arrived so not bad. i hate sitting around just wont to

get it over and done with.feeling some of the side affects today i think woke up with a red

blotchy face! and have been on the loo most of the day! lovely.glad you enjoyed your day out

shopping with your new wife!!.i got my wig on thursday ready for the big day! i was plesantly

surprised i quite like it![always had a fear of wigs!] anyway stay positive and take care.

best wishes sharon xx

Hi Sharon,

Glad to hear that the cold cap treatment wasn't too bad. Did they give you any idea as to the chances of it beeing successful? From our experience, the hair loss started towards the end of cycle 2, (after about 5 weeks). So maybe if you get to cycle 3 without any hair loss, you may be ok.

Mary wore her wig all day yesterday and today, she doesn't find it at all hot or uncomfortable. So maybe she'll be ok with it. Her tummy was affected by the carbo in cycle 1 & 2, but this time she was fine.

Best wishes, hope you're feeling a bit better soon,

John

PS - Does your username tell me that you were born in the same month as Mary, and the same year as me?

Hi John,Mary,yeah cold was bearable but they did say that it doesnt work very well with taxol

so  im just gonna go with the flow and see what happens. felt rather weak today but the loo problem

as eased off! [the joys of chemo] yes! you got it right [july 9th 58!]  take care both.

best wishes sharon xx

Hi John & Mary,

I forgot to say about the water, they tell you to drink at least 2 litres per day so as not to dehydrate also I think it must flush the toxins out of you ( not sure on that one though ) Also drinking red wine is ok ( in moderation as they say ) My oncologist  asked me what I was doing as he was amazed how quick my tumour shrunk, when I said I have a glass of red and laugh a lot he actually was walking out of the room and came back in and said well carry on doing it.

Anyway glad everything went ok for you both.

  Love Eileen xx

Hi John & Mary,

I forgot to say about the water, they tell you to drink at least 2 litres per day so as not to dehydrate also I think it must flush the toxins out of you ( not sure on that one though ) Also drinking red wine is ok ( in moderation as they say ) My oncologist  asked me what I was doing as he was amazed how quick my tumour shrunk, when I said I have a glass of red and laugh a lot he actually was walking out of the room and came back in and said well carry on doing it.

Anyway glad everything went ok for you both.

  Love Eileen xx

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