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 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

Hi Maisie

well at least you know where you stand now. I was told at onset it was treatable but not curable, unfortunately my symptoms are dermatomyocitis (Skin= rash/itch, Muscles = major ones don't work!) so while, like you, I've always felt well I am not 'normal' (even for me!), as the cancer grows it produces a protein which sparks off the autoimmune disease, so far when its at its best I'm still energyless from chemo, but providing I don't feel ill I can cope with it! I never thought of the cancer growing through the skin but it makes sense as the omentum is removed during surgery but I suspect its a rare thing. Because of the rash I keep getting told how healthy I look and as on steroids weight gain is more of a problem than weight loss, no one would think there was anything wrong if they didn't know lol. I'm also an ex nurse and lets face it we just don't do text book only the rare or unusual for us

Great site and wonderful group of ladies to chat to, vent to or just simply put thoughts into writing

When you reply everyone can see so don't worry you don't need to answer each post, though sometimes its easier when the memory is playing up lol

take care

Jackie

xxx

Hi jackie hospital rang today I start radiotherapy a week tomorrow  I will give it my best shot ! No other choice really. Until yesterday I had never heard of it coming through the skin even after nursing people with O C . Im 73 ,going on 35 in my head and I retired at 60 so I am way out of touch now and I never did oncology and have no knowledge in that area.Apart from the times when I have treatment I have had a fairly good quality of life for the last 5yrs so I count my blessings.Sorry to hear thing have been so difficult for you but you sound like a positive person.I so identify with the weight gain I put on  one and a half stone with the steroids  and most of it is still with me!!The fatigue must be so frustrating for you I do get tired quickly but I do have good days.Yes I agree we nurses seem to attract the unusual ,the blood test ca125' which is used to detect if the cancer is on the move is no good for me ,I am one of the few people where it remains normal regardless of what is happening cancer wise .They havent done it for the last 2yrs.It's lovely finding you all to chat to I will let you know how I get on.       Lol to everyone.  Maisie xxx

Hi Maisie

I was a surgical nurse so like you no idea of oncology except what I've picked up from being ill and nosey! I retired through ill health last year but have already forgotten so much its unbelievable!

There are other threads on the forum dealing with radiotherapy but I don't think its supposed to be quite as unpleasant as chemo, though each has its own cross to bear. I try and look at each 'stage' as a challenge to beat, have refused prognosis as don't want to know if i reach or pass my sell by date! I am 2 years 8 months into my 'I will be one of the ones to beat the 5 year mark' so will soon need to find another target to beat lol.

My ca125 does rise though not a lot think my highest was around 300, I don't need it though cos I know when the cancers back by either my skin or my muscles, the onc has come to accept this now which makes things easier. I like a lot of sedentary things (computer, reading etc) so I feel I've a good quality of life especially this time as the chemo has left my system, in fact sitting around I feel quite 'normal' as in capable of doing anything I could before, its when I try that I realise I can't, but its a limitation I can live with! So far I have succeeded in not worrying about something I can't change and I hope that I can continue along that trend.

You sound like your making the best of a bad situation and thats the best any of us can do, my years of nursing convinced me that a positive attitude to illness can make a lot of difference. Deal with each day as it comes and hope tomorrow is better.

take care

Jackie

Hi Maisie,

it is good to hear that you know what is going to happen next, it does seem never ending having all these different treatments but it becomes more tolerable when we are aware of what is going on. We do have to be positive and we all know how hard that is when things don't go exactly as planned. We will be here for you and try to support you in any way that we can!!

Hugs to you, Jackie Eileen Sharon and anyone else out there who needs one

Dot xx

Hi Maisie,

it is good to hear that you know what is going to happen next, it does seem never ending having all these different treatments but it becomes more tolerable when we are aware of what is going on. We do have to be positive and we all know how hard that is when things don't go exactly as planned. We will be here for you and try to support you in any way that we can!!

Hugs to you, Jackie Eileen Sharon and anyone else out there who needs one

Dot xx

Hi Ladies & John,

I can't remember if I told you all my news so sorry if I didn't and sorry if I did and am repeating myself ha ha...

It is in my pelvis not the bowel and it seems to be at the top of my groin in my viens I think he said. He did mention lymph nodes but don't think it's in them. You forget really when they are talking and my friend can't remember either ( what a pair ) I have a GFR  test next Monday to check my kidneys. And then start the chemo which is not carbo/ taxol this time. He is putting me on another one but my friend has the paper so I don't remember the name of it. Will let you know though when I get it back. All I know is you don't lose your hair with this one... Will send a post tonight.

Hope your all ok xxxxxxxxxxxxxxxx

Hi Eileen

So its back in the pelvis (same here) you don't think its in the nodes (mine is, makes no difference) its probably pressing on the veins in your groins which is causing your symptoms, all in all not as bad as you expected! He can't be using my chemo as I still lost hair though not as fast and not as much, so let us know the name of it when you catch up with your friend.

Not great news like our Dot but not bad either, I assume he's changing the chemo as you were so poorly last time so you need to behave this time lol

Take care

Lots of love

Jackie

XXX

Hi Jackie,

He did mention the nodes but as I say can't remember what he said.

The chemo is Gemcitabine and Carboplating . I am so glad I have you to ask all these questions to and all of the ladies. Isn't it a pity that we are all not near each other, how good would that be...

Hope all you other ladies are ok... 

Hi Ladies, how you all doing?. mines in the nodes in my pelvis too i see my oncoligist again in nov.

Eileen hope your not to bad with the chemo this time and like you said you wont loose the hair.

keep us posted love to you all. sharon [julygirl58[ xxx

Hi Everyone

Eileen, hopefully you will cope better with the chemo this time.

I often come back from the hospital wondering if I understood as much as I did when I was in there lol. I don't really know what to say to you other than repeat what Jackie and Sharon have all ready said, it seems never ending, there is no choice over any of the things that is happening to us all, it is a case of going with what others (medical people) decide we need.

Just for a bit of light relief for you all............I have been given those 'lovely stockings' from the lymphoedema clinic and my legs and feet are not as swollen. They told me there is no way of knowing who will be affected with lymphoedema after having lymphs removed or damaged.

The first day I wore them I felt very tender and swollen where my ovaries were, apparently the stockings help the fluid to go to lymphs that are working and from what I see it is now going to my belly lol. I now have constant heartburn lol.... I will ring up and ask if this is the norm but I feel ridiculous asking the question haha. Writing this prompted me to ring up and I laughed when I asked about it, seems that the swelling elsewhere can happen but heartburn etc isn't usually associated with it, they told me that doesn't mean it can't happen, and recommended I speak to my doctor lol. I think I will just take more antacids lol. My dilemma is......swollen legs or swollen belly, which do I chose hahahahaha.

Eileen Jackie and Sharon my thoughts are with you all constantly,  I do hope we hear some good news for you all soon.

Hugs to all xxxxxxxx

Hi All

For what its worth my friend and myself can never remember whats said at appointments and she's still working as a nurse! just goes to show when its close to home the brain will only take in so much!!! We also have a habit of discussing things when we come out and can't believe that we let him away with some of the things he's said - they made perfect sense in the consulting room but none at all after!

Dot, I bet the stocking look delightful if you give it a while the lymph system in the abdo may get used to all that fluid again and your tummy will go down. Do make an appointment with your GP as Losec may be better than antacids(and there only once a day!)

Eileen, have heard of that as a combination therapy but don't know anything else, will look it up when I get time but things are a tad crazy at the mo! When are you starting it?

Judy I beat you have my next appoint on the 7th Oct hate going just because, I'm not ready for chemo so whats the point??? Oh sugar that means I'll have to get some blood tests sorted what a waste of time.

Extension going up rapidly and the good weather has helped them (but not me lol really really itchy again ) have been stripping wallpaper and it feels good to be more active, can't do much but by sitting down for 5 mins frequently I'm getting there!

Keep us informed of events

Take care

Jackie

xxx

Hi everyone,have had 3 of my 5doses of radiotherapy .H ave been told that they are large doses and I am only having 5 because the body can't take more of that strength at one go ,that is different to what I was told in clinic.( was told they would be low doses )'Feeling. A bit sick, tired and sore already though  they said the side effects will probably not kick in until I have finished the course. Found out why I was offered radiotherapy when it is rarely used for ovarian cancer .apparently most women have a more wide spread cancer,which is difficult to treat,and as my 3 areas of spread are so close together it is possible to "Blast "them all at once .At the moment it feels as if I have a solid cannonball in my abdomen still upwards and onwards hope you are all as ok as you can be love Maisie x x x

Hi Maisie,

sorry to hear you are feeling sore after your treatment, I have heard differing reports on radiotherapy, many have been very positive, I just hope the side effects don't last long!! You sound positive and that is great!!

I hope all goes well with you

Hugs to you...........Jackie Eileen Sharon, and anyone else who needs one.

Dot xxxxxxxxx

Hi All

Good to hear from you Dot, Maisie hope your feeling better or at least coping with the side effects.

I saw my onc Friday and have another 3 month reprieve! He showed me a letter he'd written 3 months ago saying he would review in 3 months but expected me to need chemo before that, he told me to keep proving him wrong (like I need that challenge lol). CA125 only up 20 from 3 months ago, if it dosn't suddenly rise I could do another year lol. Anyway feeling good, weather colder which suits me better despite having no windows at present! extension should get its roof Wed, and the windows should go in Wed which at least means we get the living room back for a while!

Hope your all doing OK, waiting to hear from you Eileen!

Love

Jackie xx

Hi Jackie , Dot, Sharon, Maisie, John & anyone else I forgot to mention,

Jackie that is brilliant news I am so happy for you.xxx How is the house coming on? I hope it's not too much of a mess and I really don't know how you are coping with it. Your very patient. I have decided to stay on renting my friends house as I was sick of looking at places that just didn't do it for me. I should have rang Kirsty & Phil ha ha.. Anyway I have been painting and moving boxes from one place to another. I have ordered some blinds for bedroom window so at the moment I have newspapers at the window ( bet the neighbours think the clampets have moved in )

I had my first lot of chemo on Friday, what a place this hospital is. My appointment was for 4.30 and I got hooked up to canula at 8.30, nobody took my blood pressure before or after nor temp. I got out at 11.15. I was spoilt I think at my last hospital and as I know this one is the biggest and supposed to be the best in the country they are running people through constantly so it wil be expected. They have put me on a 1 hour bag of carboplatine & 30 min of Gemcitine I think it's called.

Next Friday I only have the Gemcetine so not too bad, then the week after nothing, it all starts again then so will go on until February. I have already started with thrush in my mouth and woke up at 4:45 with the steroids and a bright red face, so took an antihistamine.

Anyway ladies keep sending all the good news and Jackie take it easy with all that work be done.

Love as always Eileen xxxxxxxxxxxxxxxxxxxx Ps really miss you Rose. xxxxxxxxxx