Hi ladies

Sorry I've not posted for a while, trying to push it to the back of my mind I guess but its always there tapping away at your head.

Anyway, just found out it is on the move again - I finished my secound round of chemo back in June and I was really hoping for a bit longer this time but it looks like its not mean to be. Ca125 was around 10 but has gone up to 42 so  waiting for scan then more chemo in January. They have mentioned another type this time - Genti something I think, I didn't quite catch the name. Does anyone know anything about it?

I know a few of you are in the treatment 'loop' and my thoughts are with you whether you are on chemo or off chemo, it is good to hear your experiences tho I always feel I've got nothing worth saying.

Bye for now

Sue

Hi Sue,

I am on Gemcitibine/Carboplatine,  I was on Carbo/ Taxol last year but have had 3 cycles of the Gem/Carbo. They usually give it with an hour bag of Carbo then half hour bag of Gemcitibine. The week after just the half hour bag of Gem then a free week.

Dot I did manage to get my scan today which was good as there was only a handful of people having scans. I go to clinic next Thursday so should have results. I hate the results day as you all know it is hard waiting to hear the Drs words. Anyway fingers crossed for me.

I hope everyone else isok and Jackie you are getting straight with the house. Mary, John, Sharon, and everyone else keep us updated.

Love as always Eileen. xxxxx

Thanks for replying Eileen, its good to hear from someone having that type of chemo - how have you found it? are the side effects similar to the carboplatin/taxol treatment? usually by day 8 you are picking up again so does the second dose of it make you feel rough again. Sorry so many questions but my head is spinning and I'm not 100% sure that is the treatment I will have! Best wishes Sue

Hi Sharon,

God that's all you need your mum being poorly as well, I hope she is ok.

Great news about you not having to go back until Feb. At least hopefully if your mum is alright you can have a nice Christmas. We never seem to get long,  I remember Dot saying she didn't have to go back til Dec and here we are already in it. I hope next year we get at least a 12 month break before it rears it's ugly head. I don't know about you ladies but it gives me so much comfort knowing I have all of you out there.

I am dreading next Thursday as I get my scan results and while I am sitting waiting in that very lonely place, I think of all of you. My hospital is a cancer hospital only in Manchester ( I am sure you know which one ) anyway even though I know we are all in the same boat it gives me more comfort thinking about you lot.

Well Sharon and ladies take care and will let you know next week...

Try and take it easy about your mum ( easier said I know ) but stress is not good for you...

Love always Eileen xxxx

Hi Sue,

I am not sure about the Gem/Carbo as I thought Carbo/Taxol was hard but I don't know if it's because I had not had chance for my body to get over the last chemo but my bloods are continually low and I have to inject myself for 5 days after with filgrastim.. I expect it will be the gem what they put you on as it's for ovarian cancer.

You don't get the aching legs or neuropathy with this one or lose your hair but It does upset my bowel. I like Dot have IBS though so I think with anything that is weak in your body it will affect.

The main thing Sue is whatever they offer you is a bonus and I would have it ( even though I feel most days so ill ) Let me know how you get on anyway and any other questions please ask.. Oh after the one that you only have the half hour gem you don't have to go home with any steroids so it is easier and then you have the free week before your double bag..

Love as always Eileen xxxx

Thanks Eileen for that info. I too am at a cancer hospital in Manchester (i'm sure you know which one) so we may even be in that big waiting room together on some appts! You are right, whatever they offer I will take willingly if it gives me half a chance but its the unknown again. With the Carbo/Taxol you knew what to expect - you had a dip then picked up again, but with Gem/Carbo is it the same or does it dip after the second dose too?

Only time will tell and I guess I'll find out soon enough, just have to wait for the scan in the New Year. Did you get offered the ICON 6 trial? I've been on that so far but think they'll take me off it now. Hope you are keeping OK ( I won't say well!). Good luck with your scan results. Sue x

Hi Sharon,

I am sorry to hear that your Mum isn't well, the stress must be awful for you. Fortunately you have good news about yourself and have a breather until February.

Try to take time out for yourself, which is hard when you have a poorly Mum, just wanted you to know I am thinking of you.

Dot xxxxxxxx

Thanks Dot, could do without the stress of it but when im the only one to look after her its hard.

shes been diagnosed with dementia she may be home in a day or to dont know if thats good

or bad news for me!.im worn out now and xmas round the corner! oh well keep me occuppied

i suppose. yeah no hospital for me till feb  im ok just get tired so easy! anyway lets hope we

all have a good new year. lots of hugs sharon xxxxxx

Hi everyone hope you are still coping sorry I have not been in contact for awhile life is just so busy and I try to keep things as normal as I can and enjoy my little ones that's what it is all about for me now.We have a 7th great grandchild due in march our second girl looking foreward to that. I am considering my self very lucky at the moment the radiotherapy has been the only treatment that has really worked for me in the five and a half years I,ve had this cancer.Its unbelievable how much it has shrunk, as I said before it was like a hard cannon ball in my abdomen and now I can hardly feel it and and every thing is soft again ,plus the bleeding has stopped and I am not getting any pain at all.WOW,It's still there I know that but I feel more positive it has bought me a lot more time.Still get very tired but I can deal with that.     Love to everyone take care     Maisie x x x .

Hi Maisie,

it is lovely there is a new baby coming soon, such excitement and planning, gives you something to look forward to.

I love that you are feeling positive as it is always the best way to be, especially after the length of time you have been dealing with this.

Good to see you in the forum again.

Hugs Dot xxxxxxx

Hi all

got the all clear for another 3 months, I mentioned not feeling well and I was thoroughly checked over, could be the time of year getting to me, it was my birthday on the 5th and Hospital on the 6th and all I could think of was that I didn't want to have to tell my family anything negative at the moment.........I didn't so all is good!!

I lost 2lbs lol... got weighed at the Lymphoedema Clinic, I have lost 200ml of fluid off left leg and similar on the right, but the left is still bigger, hopefully I will keep losing it don't want to be lopsided forever hahahaha.

My thoughts are with you all, haven't heard from Jackie, hoping she is busy with her renovations, Eileen I hope you are coping well, Sharon and everyone else hugsssssssss

Dot xxxxxxxxx

Hi everyone

Great news dot and maisie, long may it continue!

Hope Eileens doing better on this round of chemo, sorry have not replied but still have builders 8-4 mon to Fri and watching them is so tiring lol, I'm sure it will be worth it when its done but in the meantime its a massive disruption though its easier now its starting to take shape

Health wise I'm doing ok, still having lots of skins problems from rash to itch to ulcers! have reluctantly increased the steroids to 20mg but now everything tastes horrible so they are decreasing from today lol. saw the dermatologist and he's started me on an anti malarial drug! apparently its effective in controlling the skin problems and dosn't prevent me being given chemo when i need it, so fingers crossed it works. Am determined no chemo till all house finished which will be feb at the earliest, so far so good but my legs are slowly going downhill and I need my non-bath shower real soon lol

I know I've missed lots of you in this post, memory is bad lol know somwone else was about to start chemo and I hope they are doing ok

Wish cancer uk would allow reading of other posts while replying, would make my life a lot easier!

Here's hoping you all don't find the build up to Christmas to tiring

lots of love

Jackie

Hi everyone

Great news dot and maisie, long may it continue!

Hope Eileens doing better on this round of chemo, sorry have not replied but still have builders 8-4 mon to Fri and watching them is so tiring lol, I'm sure it will be worth it when its done but in the meantime its a massive disruption though its easier now its starting to take shape

Health wise I'm doing ok, still having lots of skins problems from rash to itch to ulcers! have reluctantly increased the steroids to 20mg but now everything tastes horrible so they are decreasing from today lol. saw the dermatologist and he's started me on an anti malarial drug! apparently its effective in controlling the skin problems and dosn't prevent me being given chemo when i need it, so fingers crossed it works. Am determined no chemo till all house finished which will be feb at the earliest, so far so good but my legs are slowly going downhill and I need my non-bath shower real soon lol

I know I've missed lots of you in this post, memory is bad lol know somwone else was about to start chemo and I hope they are doing ok

Wish cancer uk would allow reading of other posts while replying, would make my life a lot easier!

Here's hoping you all don't find the build up to Christmas to tiring

lots of love

Jackie

Hi Everyone,

Jackie so lovely to have you back online. I bet the house will be lovely once it's done. I hope you get your skin problem sorted as well, I really don't know how you cope with it all..

I got my scan results yesterday, they can't operate as the cancer is dotted about. I have a cystic mass that is getting bigger on my right lower side. The Dr said it is good with it being cystic. It doesn't sound like it makes sense but it is good so if they say it is then I will agree... My chemo is working as well.I had my 1st of 4th cycle today. I have to inject myself for 5 days again, but it is keeping the bloods up.

I have managed to get new year off as I asked because a very old family friend is having a big new years party for his suprise 80th. I should have had chemo on 30th. They said the 6th Jan now so I am very happy. 

Everyone take care.

Love as always Eileen xxxx

Hi Eileen, thats great news! I think a cyst by defination means its 'walled off' therefore none invasive though i've never heard of a tumour defined as a cyst but hey we live and learn lol. mines always dotted around the abdomen though to be fair a second op has never been considered, the chemo mops it up anyway and lots of little ones are easier for it to deal with (least thats my understanding). Its great that your chemo has worked out leaving you to enjoy a new years party! you sound like your not having as many problems with the chemo as last time and i do so hope it will continue that way for the whole treatment.

I don't always cope with the skin problems which is why I've started another treatment lol, it does drive me demented at times, however after 4 days of the new tablets I don't seem to be getting on very well with them, constantly feeling sick (which I don't cope well with at all ) but will keep going and see if it improves over the next few days.

Love to all

Jackie xxx

Hi Eileen,

Is that so you can have a rest or so you can have a couple of beers, champagne over new year. I am also sort of lucky...I am being prepared for some more surgery so cannot have the Avastin for at least 6 weeks before and 6 weeks after surgery as the Avastin wont allow blood to clot and subsequently heal the wounds.

Cheers

Tony xxxx

Hi Tony,

Ha ha, yes it's so I can have a nice few glasses of red wine. I don't like beer or champagne.. It is an old neighbour who is 80 on new years eve so I was really hoping to make it. I think I need a break from the chemo as well. It is 12 month tomor since my chemo last year..How time passes..

Glad your having a long break. Tell me about the operation and what they are doing ?

Love as always Eileen xxxx

Hi Jackie,

I am not sure about the cystic mass either as the Dr said the tumour that is giving me pain is growing but that's good as it's cystic which means fluid. I never thought to ask more questions as I was so relieved to hear that the chemo is working.

I wish I could think of something for you to use for your skin rash. It must be so uncomfortable.. Have you tried goats milk ? I can't remember if I said it's good for eczema so could work and worth a try. I have felt sickly after Fridays chemo and I don't normally, its not good..

Keep us posted Jackie as we all miss your posts...

Love as always Eileen xxx

Hi again Eileen...

As to my surgery... Last year I had a tumour removed in my large intestine...they rejoined the colon and fitted me with a temp stoma which was reversed last June. I then developed really bad pain in my back passage and on investigation it was found there is an ulcer on the join which is making it rather mucky and horrible. It is also a place to harbour other cancer-like cells. Anyway I have taken the option given to me to have a large piece of my colon removed (obviously with the ulcer with it). An unfortunate side is the requirement of a permanent stoma. Appt next week to chat with the surgeon then a date will be set...hopefully after Christmas so I get the rest and the beers...not a major drinker however need to take the chances when you can... :@)

Thanks for asking

Much Love

Tony xx

Hi Tony,

I am so sorry about your up & coming surgery, you are very brave. It sounds so painful having the ulcer ( nasty things to have anywhere ) but there,, god the pain and as you say it is harbouring all kinds of things.

How do you feel about the stoma being permanent ?

I suppose we will do anything to try and stay alive and in reasonable health. I said last year that if my cancer comes back then I won't be having anymore chemo as last year was taken away from me with chemo, hospitals ect. I said I wanted quality and not quantity if I never feel well. How quickly I changed my mind, when I heard it was back 6 months later. I always feel that I am not as bad as others on here when I read the posts.

Please let me know after you see the surgeon to see what he says...

Love always Eileen xxx

Hi Tony, shame the reversal didn't work as planned but on the bright side you coped with the stoma before so it won't be as strange this time and they do site them to be unobtrusive, least its not actually for cancer which means so far so good! I never was much of a drinker but my cancer came to light following a very heavy night on my 50th, by 4am I had noravirus (yes really not just sickness and I know the difference!) never really got better then got the rash which led to the diagnosis, its put me off the drink completely, though to be fair being Irish it was whiskey i was drinking and while it was enjoyable to drink it wasn't when it decided it needed to resurface!!!!!!! ain't touched a drop since lol so you'll have to have 1 for me but you'll be pleased to know it dosn't have to be whiskey!

Hi Eileen, i think we all feel others are worse off cos we know how we feel, but can only guess how others feel and boy do we have active imaginations! Have decreased steroids to 10mg new tabs seem to be ok so far, though he wants to increase them when the blood result comes back (assuming its ok). The only time to decide when your not having any more chemo is while your having it or just before you start, I don't think you can decided I'll have this one then no more cos the one thing we are good at forgetting is bad experiences, just look at child birth, how many women say never again following the birth then the following year there having another one!!!! I believe your body tells you when you've had enough, I don't expect to have to think about the decision, i think I'll just know but meantime its equally important to feel positive. I have tried to talk to those I'm close to about this but they struggle with it (despite most being nurses lol) possibly because I'm always looking so well (advantage of the rash!) and it reminds them that I'm not! am fairly sure they will all cope when the time comes to withdraw from treatment but i don't feel that will be anytime soon lol

We are postponing Christmas till all the work is done lol no place to put a tree and can't cope with the thought of finding places to store Christmas presents pre and post Christmas lol my friend is off Christmas day so we will go to her parents (they are lovely) for the day. I find Christmas very strange as I don't really know what to do! In my 34 years as a nurse I only ever had 1 Christmas day off and that was by accident so I always feel I should be at work, actually so far I haven't resisted going in on the day to see everyone lol

Think the workmen are nearly finished outside! should be starting on the ensuites tomorrow (very excited!) and the carpenter is coming Mon to sort some doors out!

Fingers crossed it was only a blip with your chemo and you'll go back to feeling fine

Lots of love to you both and everyone else

Jackie

xxx

Hi ladies

Just to wish you all a good christmas and a better new year!

Have fun and enjoy

Love and best wishes

Jackie

xxxx

Hi everyone just wont to wish you all a merry christmas lets hope 2012 is a good year for us all

eat drink and be merry if [if its allowed!] big hugs and kisses sharon. xxxxxxxxxxxxxx