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 everyone,

I'm so pleased that this thread is active again. Please do not feel that you're complaining or competing, it is very helpful to know what others are feeling and thinking. I know that Mary gets paranoid every time she gets a pain or a twinge somewhere. Unforunately the experiences that we have all been through messes with your head, and even though the oncologists are very happy with Mary at the moment, she is a long way from being convinced that she is ok.

What can I say, Mary deals with it in her own way, she cannot discuss her feelings with fellow sufferers, that's just the way she is. That is why I'm here, I have learned a lot from you all and that has helped me so much to support Mary. So thank you all for that, and long may we continue to support each other, or just come and share our fears and feelings, or let off steam.

I hope too that readers of this thread will also contribute, if only in a small way, because your comment may just help someone a little.

Thanks again,

John

Dot,

Just wanted to say good luck for today with you results. We are all with you in that waiting room remember ??????? xxxxxxxxxx

Thanks Eileen,

just about to leave......ugh have to prepare for rush hour traffic lol

Dot xxxxxxxxxxx

Jackie,

You don't know how good it is to have you back on here.

I think I am in a much position having to move again as all that work and mess will be awful ( get to Ireland for a few weeks )  I am dreading it as tomorrow I getting nearly all my furniture moved to my daughters. She is putting it in her conservatory as the cottage I am moving to is a small one bed on 3 floors ( It is so quirky ) and it has lots of built in cupboards so I am only taking my settees, bed, Mexican chest, and boxes oh and my plants from outside. my kitchen is downstairs with a galley kitchen & patio doors opening up to a large patio area with woodland and a stream running at the back . Just what I need....

I like you Jackie always expect to hear the worst news possible as then anything good is a bonus. It's not that I am negative but I think it pays not to be too complacent if you understand that.

Love always Eileen .xxxxxxxxxxx 

Hi everyone.........good news ctscan was completely clear, my lungs, liver and pelvic area, not a trace.............sooooooooooo happy, on my way there I had a lovely feeling that all was good and it wasssss. I have been booked in with the Lymphoedema nurse for fluid build up around my body, I think it consists of massage and those really fashionable compression stockings lol, they said it is a very common complaint.

Eileen I am hoping that you will have some good news, but I am a prime example of being given a bleak prognosis and have come through it........I will still live day by day and be thankful for that.....so no more appointments until Christmas.

Jackie and everyone else I wish you all positive progress.

Much love Dot xxxxxxxxx

Dot Brilliant news,

I am soooooooooo happy for you and yes I was thinking that yesterday about the bad news you had.  Well get yourself a very large glass of wine tonight.

Love always......Eileen xxxxxxxxxxxxxxxxxxxxxxxxxx  xxxxxxxxxxxxxxx

Dot,

I am so happy for you, it is so great for all of us to hear good news.

Thanks and with love.

Tony xxxx

That's great news Dot! really pleased for you.

Yep, a celebratory drink is in order I think.

Take care,

John

Hi Dot, best news ever, get you out and celebrating!

up to us to keep up with you now lol

Jackie

xxx

Hi Everyone,

Well I got my results yesterday very late actually after 5pm and I was the last one.

Not good results as the tumour is back and its growing fast. They are not sure if it's in the bowel just the pelvis ? I have to wait now for 2 weeks after they have their meetings and discus what they want to do.

I am moving today & tomor as well so very busy. I was awake all night thinking this is it this time but then I thought of others that have scraped through so I am trying to be positive again...

Love always Eileen xxxxxxxxx

Hi Everyone,

Well I got my results yesterday very late actually after 5pm and I was the last one.

Not good results as the tumour is back and its growing fast. They are not sure if it's in the bowel just the pelvis ? I have to wait now for 2 weeks after they have their meetings and discus what they want to do.

I am moving today & tomor as well so very busy. I was awake all night thinking this is it this time but then I thought of others that have scraped through so I am trying to be positive again...

Love always Eileen xxxxxxxxx

Hi Eillen

I ofen read your posts and i am sorry to hear the results sucked.I just throught that i would write because it is in my bones but lovely biophosphates and of course chemo means that they cannot find it on the scans.I only go back every 6 months.Scraping through is not what you wish for but it gets you there.

Good luck

Hi Eileen sorry to hear your in the come back group but that dosent mean its not treatable! I only got 6 months from my initial chemo but when he swapped the taxinol to doxil I've done much better so don't give up! There bible (nice guidelines) says if you get 6 months from initial chemo they can re-use it so they may go that way. Are they sure about the bowel? You said you felt well apart from groin pain so thats got to be a good sign. Its probably a good time to be moving as it gives you something else to focus on, so I hope the next couple of days go well for you and the settling in process keeps you busy till they decided what to do next.

keep your chin up, while its not the best news its not the worst either!

Lots of love and hugs

Jackie

xxx

Hi Eileen,

What a time to be moving ay?

I always find the worst time to be positive is right after the 'bad' news. We all feel we should pick ourselves back up and continue moving forwards, however easier said than done. At times like this I remember our good friend Rose and quote:

"Come on now you are only allowed to be down for 10 minutes. then you must pick yourself up and continue the fight"

Now I know Rose appreciated that it was not always easy to stay upset for 10 minutes then switch it off but the sentiment stays with me...The thought of Rose wagging her finger at me makes me smile and that gives me the strength to move on up!

Good luck with the move etc and come back to us to let us know how it is going or how it went!

Much Love

Tony xxxx

Hi Eileen,

I can imagine how you are feeling at this moment, I am sorry you have to have this worry again, Rose's words that Tony quoted are wise words.

Everyone has said what I wanted to say to you, what we don't do Eileen is give up (I nearly did). I am only mentioning myself because as you know mine travelled from the ovaries to the liver and my both my lungs....you heard my results the other day, who would have thought that could happen?

We are all here for you

Much love, you are in my prayers and thoughts xxxxxxxxxxxx

Hi Eileen, sorry to hear your news just wont to say im thinking of you be strong i know its easier said then done.

but we really are all here for you to have a moan or scream at what ever you feel like doin!!. i wish i could give you

a BIG HUG right now. take lots of love [julygirl 58] sharon xxxxxxxx good luck with the move.

Aw Thank You all for your messages, it really is good to know you are all out there.

I am not online yet with the move, and I had a change of plan. I should have moved to a lovely cottage I told you about and I let the owners know that my cancer had returned so they ummed and arred so I didn't go. I felt they didn't want me there  so my friend had moved in with her boyfriend so I am renting her house now and it's closer to my firends and family so a better choice..

I am not sure how long they will take to decide what to do but I am sick of the not knowing and this time around I am finding it harder to stop worrying, prob as we all know whats in store this time. Jackie the Dr said he is reluctant to give me the carbo/toxol as I was ill so much last time but will the other chemo's work as good. ?

I will message you all in a few days as I am at my daughters so using her laptop.

Hope you are all doing good.   xxxxxxxxxxxxxxxxxxxxxx

Hi Eileen,

sorry to hear you are up in the air about your move, you have enough to worry about with your new treatment looming, it is awful not knowing where this is heading, but I remember Jackie having to change her treatment too and she is still supporting us all and dealing with it all over again, it is so hard having to keep positive when all of this is going on. You had a bad experience with your last chemo and I wouldn't want to see that happen again, using a different treatment may be the way to go, I just wish they would let you know what was happening as the gremlins pop in very quick!!

I think of you every day and I pray that all will turn out good for you.

Hugssss

Dot xxxxxxxxxxxxxx

Hi guys

Yes Eileen the dr changed my chemo and its actually worked much better for me, its not the 'gold' standard but what use is the gold standard if it damages you so much that you have no life for 5 months? I had no problems with the carbo/taxol except neuropathy but I still had it when I needed more chemo which is why he decided to change it, but my cancer is growing much slower this time round. I managed a 3 mile walk the other day so muscles are still more than adequate and i hope to get another 6 months before I give in having said that I did try to run a couple of steps - top half obeyed legs didn't = fell flat on face!!!! lesson = can't run so don't try, stitches hurt and face can look uglier than normal

I found it harder second time round but I never did work out why! even going for treatment was harder though I had less problems than the first time. The only thing I came up with was that the first time you hope for a cure the second time you know its not a cure but a treatment. As for the third time so far is not bothering me at all but that could be because treatment is not imminent! What i don't understand is why you are being kept in the dark for 2 weeks, I have a scan followed by appointment with oncologist, at the appointment he decides what he's giving and when. The only thing I can think of is they think another operation may help, Don't want to worry you but at least if you think its a possibility you will be prepared when they see you.

Sounds like you house move has worked out better, I certainly hope so. I have men in my front garden digging out the foundations of my new extention as I type! very impressed so far as the dogs have just ignored them! not sure that makes them any good as guard dogs but hey at least I know I won't be driven insane for the next few weeks/months

Let us know when you get an appointment date

Nice to hear from you Dot

Take care

Jackie xxx

Hi dot I'm new to this site.I was diagnosed with ovarian cancer in 2006 found by accident whilst having an ultra sound for something else.It was1st stage I had surgery and was told the chances of it coming back were very remote .It came back in 2008 and I had carboplatin tolerated well a scan confirmed it had disappeared. However it was back within 4 months in my abdominal wall and vagina.I had no further treatment until 2010 when I had further chemo calyx that was pretty difficult lots of side effects chest infections sore throats mouth ulcers and skin discolouration. It did shrink 2centimetres but it was growing again 6 weeks later. Since then I have been taking 40mgms of tamoxifen daily I seemed to lose every bit of energy so I stopped taking it 6days ago,and i feel a bit better already.It's also spread to the lymph glands in my right groin. Do you know anyone with a similar treatment history! On Monday 19th I see my consultant and she says I should consider further chemo or radiotherapy and to be honest I don't know which way to go.I have tried my own method telling it to sod off but it's not working!!  Kind regards Maisie

Hi Maisie,first may i say a BIG welcome to the site were always here to help and have a moan at!

i was diagnosed oct 09 with ovarian cancer after having hysterectomy which was a shock! i started chemo

nov 09 till march. whjch seemed to do the trick or so i thought then july 10 after a ct scan the gremlins were

back!. in the pelvis area just had check ups then in jan advised to have chemo again [carbo/taxol which

knocked me for six! finished july.had a scan in aug they sed things seem ok at the moment i go bak in

nov then take it from there. its just the not knowin and hospital becomes your second home!

anyway enough about me hope to speak with again [julygirl58] sharon x