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 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, What a beautiful name you have.   Welcome, I have just read your messages and I feel so sorry for you. If it's not one thing it's another with us all. You do sound like all of us as in very strong and positive and it is the only way to think.

I have my appointment tomor to find out what if anything they are going to do this time. I will let you all know ladies.

I am only staying at my friends house on a temp basis as her boyfriend has decided that he wants a rewire, new plumbing ect done so I can't stay here while all that is going on so I am on the move yet again ( Jackie it must be Irish blood in me ) I have 3 houses to view tomor before my appointment. It isn't anything to do with him either the house so I am not a happy bunny .

Anyway Masie, Dot, Sharon, Jackie, & John will let you know Friday whats what. xxxxxxxxxxxxxxxx

Bless you Eileen your not having much luck with the housing, hope you find something suitable soon. My extention has started and so far its not going badly, dogs are not even barking which I'm well chaffed at cos it would have driven me mad if they did! Had a big trench Monday but now have 3 rows of brick! something called hoggins (!!!) arrive tom then the floor gets concreted apparently. As i'm getting 2 extentions (1 front + 1 back) and rearranging the internal walls apparently it won't be finished till Jan/Feb, i'm assuming thats more likely to be Feb/March lol. Can I wait that long before chemo is the queston????? don't know is the answer but i will surely try!!!

Will have fingers crossed for you tom and you will as ever be in my thoughts (despite the hoggins!)

good luck

Jackie

xxx

Hi Ladies, hope your all doin ok weathers changing dark nights on the way could do with being somwhere

a bit warmer! maybe just after xmas which is creeping up on us!.anyway good luck Maisie with the treatment

hope it goes well. Eileen carnt keep up with you with the house hunting! do you have irish in you then!?.

i believe i have too from way way back. people used to say i looked like a gypsy not with this hairstyle they

wouldnt!!. good luck with the hospital il be thinking of you. hope all goes well. love to dot and jackie and

anyone else out there ive forgot xxxxxxxxxxxxxxxx

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 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...