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, 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 Ladies,

Mary hardly slept at all last night, my daughter and I survived the Lamb curry but I think perhaps her tummy is more sensitive than usual, so lesson learned. She is feeling a bit better now, just washed out and tired, understandably. My youngest son is coming home from Uni for the weekend tonight, so that'll cheer her up.

@Jackie - re-spreading out the Taxol doses, I'm inclined to think it is a better way too, Mary has got off pretty lightly in respect of side effects when I listen to other stories here, considering she is over half way through cycle 3. It's a bit inconvenient having to go every week for treatment, but she only has bloods and clinic 3 weekly so it's not too bad. She is quite happy with the hickman line now, it is definitely going to make things easier.

@Eileen - How dare you malign my cooking! HAHA! Seriously, perhaps you should try that Floradix, I'm sure it makes a difference with regard to tiredness.

@Dot - That's great news, keeping everything crossed for you getting the all clear!

Best wishes,

John

Hello lovely,

Havent been posting much but still reading as I have cellulitis in my arm and it is swollen and awkward to type.Antibiotics kicking in so starting to go down  a bit..

10 o,clock is late for me,I,m in bed by 8 !!! New chemo isn,t too bad so fingers crossed.Hope your new baby is doing well,they are a godsend.

Take care and we shall meet in Carmarthen when the sun comes out/

Rose xxx

Hello lovely,

Havent been posting much but still reading as I have cellulitis in my arm and it is swollen and awkward to type.Antibiotics kicking in so starting to go down  a bit..

10 o,clock is late for me,I,m in bed by 8 !!! New chemo isn,t too bad so fingers crossed.Hope your new baby is doing well,they are a godsend.

Take care and we shall meet in Carmarthen when the sun comes out/

Rose xxx

Rose you are certainly going through the mill, you are always in my thoughts!!

Cellutis is so painful, hopefully the antibiotics will sort it out quickly.

I do hope this round of chemo works for you, it is hard for you having tried so many, fingers and everything else crossed for you. The tiredness is understandable, it has been a very long road for you.

Big hugs chuckie egg xxxxxxx (geordie endearment lol)

By the way my swollen legs are a boon, they take the wrinkles out of the calves lol......I really can't complain about anything!!!!!

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 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