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

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 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 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

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

Hi Maisie and welcome

You sound as though you've had some really bad luck. Most of the journeys on here so far do sound different to yours, even the chemo used, we all had carbo and Taxinol the first time though I have moved to carbo and Doxil now. By the sound of it, it regrew quickly after the chemo but you did not have further treatment for quite a while? Sorry can't advise on rad/chemo as my understanding so far is radiotherapy is not commonly used for ovarian cnacer. My oncol says it don't really matter where it spreads as the treament is the same (Dot's went to lungs but treatment sorted it so guess thats right). NICE guidelines say chemo of carbo and Taxinol is first choice, if recurs less than 6 months then carbo/doxil if not keep going with carbo/taxinol but this does not seem to bear much relation to what you've had or are now being offered. Tamoxifen is hormone related and to the best of my knowledge none of us are on it though it is commonly given for breast cancer, it makes me wonder if you have an atypical ovarian cancer i.e. one which is hormone related or which is producing hormones.

Unfortunately the only thing which sounds very familiar is that telling it to sod off don't work!

Let us know how the appointment goes

Good luck

Jackie

Hi Maisie welcome to the group, sorry to hear you are having such a bad time. Jackie has been through this several times and Eileen is struggling too, Sharon has replied and told you about her experiences.

I was given the all clear, then I was told it had spread to my lungs and liver and that I had a particularly aggressive cancer but following the carbo/taxol I had great results and finally got the all clear. I am not complacent and very aware it can come back but know that bad news doesn't always mean that we can't recover from it.

As Sharon said the not knowing is very hard to deal with, I too considered not going through the chemo route but I am glad I did. Hopefully the Doc's will steer you in the right direction and give you options allowing you to do what is right for you.

There is always someone here to listen........rants and all.

Hope you hear something positive soon

hugs Dot xx

Thank you to everyone in the group who replied it is very much appreciated.I saw my oncologist today and I wasn't, given any options she said I need radiotherapy as soon as!! I had a ct scan straight from clinic got all marked up only with small dots mind you .I said if I had to have a tattoo afairy would be nice but they weren,t up for it!. So there it is ,I have been experiencing itching.on my lower abdomen and sharp nerve pain this apparently is because the cancer has spread to just under the skin surface and I have been told if the skin turns purple it could break through and we (meaning ME )! Are in trouble. Its five sessions and will be starting in the next couple of weeks.My cancer is not curable all treatment is palliative .In the periods of non treatment I have been fine not I'll in myself in fact I still do 90percent of what I have always done .The hospital I attend is very highly rated and my doctor is brilliant .She says we can try more chemo later .I'm a retired nurse (41years nursing ) so I am usually very involved in my treatment ,nothing goes un questioned. In spite of everything everyone tells me how well I look !.I will just carry on and do my best to deal with things as they come along it's nice to know I have people to sound off to if I need to thanks again.love to everyone who replied maisie.  X by the way .my cancer is serous the most common I believe.

Hi thanks for your reply.just replied to dot I'm new to this so I don't know if everyone can read the same reply or only the one to you individually.So AT the risk of repeating myself I have been told today  have to have radiotherapy as  soon as I have known for some time that my cancer is not curable all treatment is palliative in general I have remained pretty well,I don't look ill and I still get on with life,I have a great time with my 6 great grandchildren.the eldest is autistic and the most loving little boy you could meet David is 5and the hardest thing for me in all this is the thought of leaving him .We are exceptionally close have been since his birth he tells me he loves me loves me loves me with his heart forever! And that I am his best bestist friend.He burst into great sobs and clung to me like a limpet when I came home from a weeks hol and told me he didn't want me to go way again.I will cope with the cancer face things as and when I need to with support of cause we all need that it's not something to face alone but it destroys me if I'm honest when I think of how will he understand where i have gone.Anyway now I have depressed you! Let's be positive I have every intention of being around for a long time yet .thank you for listening.   Love maisie