Hi ladies

I just want to wish you all a Happy and as Healthy a New Year as possible - bring on 2012.

Its good to drop in and see what others are up to - scan and more treatment (fingers crossed!) in January for me.

Best wishes

Sue x

Hello everybody, may I join you and introduce myself?  I opened a new thread on this subject the other day in the "introduce yourself" section, but I really wanted to get onto this site.  I  am 67 yo and live in Essex, UK and have recently been diagnosed as having tumours on both ovaries, plus some areas on the omentum and outer bowel.  However, my hospital MDT  wants to ascertain whether my ovaries are the primary site or secondary to breast ca I had 15 years ago before planning my treatment, so I've just had a biopsy and await results on 22nd Feb.  I found your site about a month ago and was both heartened by all your posts, and at the same time scared - not of the treatment particularly but the outcome.  Some days I feel that I won't get through this, other days I think "No, you won't get me, you (expletive deleted!)"

The last post on your site was 28th Dec, I have been checking, so I hope you are all getting along OK

Best wishes, Hazel. X

Hi Eileen, you do like delaying your chemo don't you lol

Still think if you can't get around/do things you need pain tabs, pain tells us something is wrong, but we already know that, so there is no point putting up with it! why not try simple stuff like paracetamol or ibrufen? (stores own brands are the same and way cheaper!) if they don't do it then please discuss it with your team. Pain will make the chemo harder to deal with (and you have enough problems with it lol) but may also lead you to stop treatment cos you've had enough when getting it sorted could leave you coping for longer. Maybe I'm just feeling like that cos I'm getting very fed up being limited in what I can do! even my past walking difficulties i could struggle though but this abdo pain just leaves me sitting in a chair with feet up all day - very fustrating!

sorry to nag!

Take care

Jackie

xxx

Hi everyone,

(Restless night after LONG day of chemo)

I have only one last comment on the subject of quality of life over quantity.  I don't want to die, of course I don't, but maybe it's because I'm pushing 68 anyway and so much older than the rest of you - apart from dear Dot - that I have a slightly different view on the subject.  I still stand by what I said before - I would rather just rely on palliative care if treatment became too much.

Anyway, poor Jackie and Eileen, you seem to have more problems than the rest of us put together, and I can only admire your resilience, and hope things do improve, and that you get to have everything done today, Jackie

Incidentally, Jackie, re your suggestion to Eileen of paracetamol and ibuprofen, I have been told not to take anything like that as it could mask any infection because it lowers temperature.  My GP has given me codeine phosphate, but I've yet to prove it's efficiency as pain relief, I am waiting to see if it prevents the terrible stomach cramps like those I had after last chemo. I shall find out in the next few days!   When I am not in the "danger zone" of lowest blood levels and highest risk of infection I still sneak the odd couple of paracetamol now and then after checking my temp first to be sure.  I think paracet. is by far the best as it doesn't cause the cursed constipation! 

Sharon, hope CT  result was OK?  Fingers crossed!

John, love to Mary, hope she is still OK. 

Dot, hope your leg is getting better.  Be careful!  

Love to all, Hazel xxxxxxx

Hi all

Am now the proud wearer of a porta cath, yea no more needles!!!! Chemo has been delayed till next week cos platelets 79 and need to be over a hundred, if it happens again they will try reduced dose and if that don't resolve the problem then they will remove one of the chemos (prob carbo) and hope the other works solo.

Got given buscopan (which I had already bought yesterday lol) but have to take 2 tabs 3 times a day. Dr recons I've got bowel spasm though no explanation as to why I've got it! Not one to have suffered with bowel problems till now and not much enjoying it!

Haze, I do understand I intend to stop chemo as soon as the side effects are worse than the disease and I feel my quality is compromised. I was merely saying that chemo is also palliative and can reduce the symptoms, as pain seems to be reducing Eileen's quality, then sorting the pain should increase her quality, even if she wants to continue with or without the chemo.

I hate to say it but if you have problems with constipation be wary of anything with codeine in it! co-dydramol, co-codamol, codeine phosphate etc!!! its one of the main culprits imho.

Re temp, there is lots of evidence that if you are going to have a temp it is most likely to be at 6 in the evening! so if you take paracetamol at breakfast, lunch, post temp and night you should be fine! (that's if you need it that often) taken that often it to can cause constipation

Hope that helps a bit

Jackie

xxx

Hi my name is Helen and I am 49 years of age. I was diagnosed with Ovarian Cancer Stage 3c in August 2011. My Ca level was 1750. it came down to 41 after 6 cycles of chemo (carboplatin and paclitaxol). I have not had surgery as Doctors feel it is too risky. I have been off chemo for 3 months and it has re-activated and I started chemo again today (Friday 30th) with the possibility of having Avistan alongside the chemo. My Ca level is now 1845 and I feel distraught by all of this. I thought I was doing well, I look well and in no pain. I am a very positive person and it will not beat me as I have to be here for my amazing family and friends and my wonderful 23 year old son, who have love and support me every step of the way. However, I would like to hear from anyone in the same situation and who can offer any form of support, or just let me know how you are doing.

Look forward to hearing from you

Helen

Hi Jackie,

Yea, I know what codeine does, so the old lactulose has come out of the cupboard again for next few days!  I have never had a problem with paracetamol though, probably because I don't take that many really, just as and when.  Although I do have bowel problems, owing to tumour on ovary pressing on bowel, I don't normally suffer from constipation as such, just for the few days after chemo and while I have to take domperidone. Speaking of domperidone, I've taken your advice from last month and took a couple last night after chemo instead of waiting until this morning, and so far so good, no nausea at all, touch wood!  (Hope I don't regret saying that and tempting fate!)

Glad you got something positive done today, even if you couldn't have the chemo!  Fingers crossed for next week, eh?

Take care, love Hazel xxx

Hi Helen, and welcome to the forum,

I am so sorry to hear of your recurrence, did they say why surgery was too risky? I am here supporting my wife Mary who was first diagnosed in November 2010, she had full pelvic clearance surgery followed by Carbo/Taxol treatment. She responded very well to the treatment although it did leave her with some neurapathy in her toes which has still not subsided (side effect of taxol).

We thought she was cured, but 8 months later she had a recurrence and is now back on chemo, Gem/Carbo this time because they do not want to make her neuropathy worse. She has just finished the 2nd cycle and seems to be feeling mostly well to it so far, although having a bad day today after yesterday's treatment.

Yes, the news does knock you for six and it is upsetting for the whole family, I completely sympathise and understand how you feel and I hope the ladies on this thread can help in some way. We kind of have to get used to it and try to get on with our lives although it is tough sometimes. I do hope you respond well to your treatment.

Best wishes,

John

Hello, Helen, and welcome!

You have certainly come to the right place for support and info!  If you want to find other ladies who have been in a similar situation to you, I would advise you to read through some of the stories on this site.

You seem to have a good attitude, and that can only help.  I am at the beginning of my ovarian cancer (although I did have breast cancer 15 years ago) but there are lots of lovely ladies on here who know how you are feeling right now, and I am sure they will be in touch.  (Be patient, as some of them are recovering from various treatments at the moment, and as you will know sometimes you can feel a bit rough!)

Love, Hazel xxx

Hi Ladies,

Just an update on Mary. Looks like the chemo finally caught up with her as she had an awful day today spent mostly in bed. Was sick three times this morning and has eaten nothing today. She went to bed at 7pm hoping to sleep it off as we were supposed to be going to Wembley tomorrow to watch Rugby.

I keep thinking I have given her meds at the wrong time, she has so many it gets confusing just after chemo. When should she take her first Ondansetron? Is it after dinner on the day of chemo? I gave it to her in the morning and I'm thinking I probably got it wrong.

Jackie - So you have a Portacath too now? Yes it is much easier, although I wonder if giving Mary the chemo faster may have caused her reaction. They had to slow it right down when they used her arm because the Gem hurt too much, any thoughts? Re-Aspirin, I haven't read anything about 3 & 5 years, like you say it may just be down to luck, all subjective but will discuss it with the onc in 2 weeks time.

Sharon - I hope you're results went ok yesterday.

Hope you all have a better week,

Best wishes,

John

x

Hi John and Hazel.

Thank you for replying. It is good to hear from people going through the same sort of things. The doctors chose not to do the surgery as it is wide spread in the abdomen and they couldn't be sure it would help me in fact it wouldn't be conducive to my health. So they felt that chemo would help to contain and control the disease as they cannot cure it. But as I have said it is as started up again. I feel tired tonight after having chemo today but that is all so I hope that is all I get. John I hope your wife gets through the chemo well and my prayers and thoughts are with you both. Hazel I understand about the quantity and quality thing and maybe further down the line I will have to think about it too, but not yet as I feel pretty good. Will pray for you too and hope that you won't be faced with making that choice for a good while.

Thinking of you both

Helen

Morning, John,

How is Mary today?  Poor girl, it seems to go from one extreme to another with these treatments for us all, doesn't it?

Give her my love and tell her I wish her better.

Love Hazel xxx

Morning, John,

How is Mary today?  Poor girl, it seems to go from one extreme to another with these treatments for us all, doesn't it?

Give her my love and tell her I wish her better.

Love Hazel xxx

Morning Hazel,

Good news, Mary has slept it off and feels good again today, so we're off to Wembley to watch the Rugby

Thank you for thinking of her, have a good weekend,

John

x

Hi Everyone hope your all doin well as you know i went for scan results on thursday what a waste of a morning!

my oc wasnt there so they got a young doctor to fill her slot who could only tell me ive got to have chemo again

but couldnt say which id be havin because thats down to my oc so ive got to go back in 2 wks to see her.why

couldnt they just ring me and rearrange my appointment.my partner wasnt impressed at all!. just wont to know

dont you and get the treatment set up.

John and Mary

Glad marys feeling ok enjoy the rugby my partner and 2 of my daughters have gone to watch aston villa v

chelsea [we live in the midlands!] but my daughter is more interested in Frank Lampard! still does them good

to get out takes there mind off things dont you think. xx                                                                                                                                                                                                                                                                                                                          Hi Helen just wont to give you a Big Welcome were always here to support each other or have a moan at!

anytime day or night so i hope some of us can be an help to you  what ever the problem might be

take care sharon [julygirl58] xx

Hi Sharon,

Good to hear from you, very sorry to hear you need to have more chemo, and feeling your frustration regarding your consultation. As Jackie said, it may be worth a call to PALS (I had to look that up - Patient Advice Liason Service). I thought that they had already made you wait far too long for your CT scan results, as I said before the technology gives instant results but READ THIS, Mary was given a CD to take to her consultation on the day of the scan, was then told the results and prescribed her chemo plan. To be made to wait that long and then come away still not knowing the results or plan of action seems to me unreasonable, even if the hospital is stretched or your onc is not there. Why was the onc not there? even if there is a good reason there should have been another onc on the team who could have given you the information you need. Sometimes we do not have the energy to complain when we feel unwell but I think you may have been treated unreasonably.

We had a great day today, went to Ikea in Wembley first, had a look around, met our friends in the restuarant for swedish meatballs etc, then headed off to the match. Our friend's family and friends are Harlequins fans, and our family support the Saracens (only because they're our local team - we know little about Rugby rules). About 16 of us altogether at the match, so a bit of friendly banter. We lost on this occasion but it was a close match, and yes it does take your mind off of things. I hope your partner and daughters enjoyed the footie.

Unfortunately the day took it's toll on Mary, probably too much too soon. She went to bed as soon as she got home (6pm) and has been feeling really tired and sick again. Hopefully she will bounce back again tomorrow and can just have a relaxing day.

Best wishes,

John

x

Hi, Sharon,

Sorry to hear about your results and the awful, wasted day.  Please do as Jackie says and get in touch with PALS, this is not good enough.  I just wish some of these people would have the humanity to put themselves in their patient's position!

Good luck,

Love Hazel xxx