Sweet pea,
Sounds like you are having a rough time. Hang in there I am in my first reoccurence and it is hard. I feel for you. I wish that I could CHEER you up:) The whole spectrum of the Chemo is so rough and we have to be TOUGH to the fight. Some days are worse than others and some are so fullfilling and wonderful even if it does take 2 or three pain killers to get through plus at least one day of rest!! I threw a Superbowl ( Football) party I live by Seattle and they were in but lost. I could not even walk the next day. I was so tired but it was totally worth it
Prayers and my thoughts to you
Hi Jenny - I'm having chemo tomorrow too. Let's think of each other and send positive, healing thoughts. Have you been watching the TV programmes about alternative therapies - last week was healing and it was amazing. The human mind is truly very powerful, let's try and harness it.
The hospital where I go for chemo has a cancer centre that has therapies and counselling on offer. A couple of weeks ago I did the Look Good Feel Better session. Have you tried it? It's sponsored by the major cosmetic companies and you get a wonderful array of beauty products. I don't wear much makeup normally but it was good to learn how to give myself eyebrows and a semblance of eyelashes (with eyeliner). I haven't tried acupuncture yet but I've had hypnotherapy and shiatsu (which was very balancing)and reiki and am seeing a counsellor next week. I saw her originally just before Christmas but I was still in my gungho frame of mind and just didn't feel I needed it. Oh, how things change.
I know exactly what you mean about turning into a cancer patient. Initially I refused to read or hear anything about ovarian cancer. If I saw a reference to it in a newspaper or magazine I just turned over the page, but now I'm reading everything and - let's face it - a lot of it ain't that good but it becomes a kind of obsession. It would be nice to get back to feeling normal but I guess it's an attitude of mind and something to work on. My partner and I were talking over the weekend and I've decided I must try and get back to doing the things I was doing pre diagnosis, at least as far as possible. I've become isolated too but try and make myself get out of the house every day even if I'm not meeting anyone. I go to the library, have a coffee, whatever. I'm also being more pro-active about meeting up with friends. I've also decided I must start planning things to look forward to.
The middle of the night is the worst, isn't it. I do deep breathing, try visualisation exercises (rarely works as I'm too panicky,) listen to the World Service, relaxation CDs and, recently, talking books from the library. They are proving quite good at sending me to sleep, if only for an hour or two. I slept really well on Saturday night. My son and daughter in law live in a very quiet spot - no street lights outside the bedroom window, no cars going by at all hours. Also, their house is so cold you just have to pile on the blankets and snuggle down. It was wonderful to wake up yesterday morning and realise I'd slept through the night. Even when I did wake up it was only briefly. Last night wasn't quite so good but better than at home. We'll see what tonight brings.
I noticed your other post about ascites. I had mine drained before my op and again just after I started chemo as it had started building up again. I was just kept in overnight and it was no big deal and I felt much better afterwards. The chemo should get rid of it, that's what my oncologist and her clinical nurse told me. When I first started chemo it built up a bit and I panicked but then the chemo kicked in and it went down, only to start building up very slightly again a few weeks ago and eventually I was told the cancer cells were no longer responding. It's not as bad as it was initially - like you I had 7 litres drained - but it has got worse these last few days. I keep measuring my waist and my tum and standing on the scales. I really should get a life beyond cancer shouldn't I.
Lots and lots of luck tomorrow and for the rest of the treatment. If we believe we can do it we can. Let me know how you are going on.
Love, Pauline
you asked about immunotherapy, there is a centre in america called the issells centre that offers immunotherapy.
Hope you had a good weekend in Devon with your grandsons? Bulbs are just starting to come through in the garden and I'm really looking forward to them flowering - spring does cheer me after the grey winter.
I have to say my stiff upper lip is definitely getting a bit wobbly at the moment. I'm due to start my 2nd line treatment of chemo on Tuesday having relapsed from the first lot of treatment last spring. It's a very daunting thought as I have no real idea if it will work again - they do warn that it sometimes doesn't. I'll be having taxol/carbo again and losing my hair etc! The immunotherapy trial hasn't begun yet - no date in sight yet - sorry if I misled you. The specialist registrar did say I might get the chance of some antibody ? (monoclonal?) treatment after the 6 chemo cycles as a kind of method of trying to prevent another relapse. It's been a really gruelling process over the last 18 months and I kind of cope sometimes better than others. The middle of the night if I can't sleep is the worst of course. I have acupuncture which does seem to 'balance' me and go to a centre where I can have reflexology or reiki as well as talking to others. The big danger for me has been about becoming too absorbed in being a cancer patient - spending a lot of time researching things on the internet, reading books about survivors and nutrition etc, and not spending more time doing just normal things. Getting the balance right is difficult I find and means you can become quite detached from other people. Like you I drifted through the first lot of treatment once I got over the initial shock, but I began to panic when the chemo stopped. If your hospital or GP can provide any counselling it might be worth your while - I did it. Some GP practices will provide/fund acupuncture tho' mine doesn't. I hope you have good family and friend support - it makes a lot of difference. Hope to hear soon. Jenny
Hi Jenny, my name is Pauline. Thanks for responding to my query. I will look up all your references.
I do hope your own treatment is successful. How do you manage to cope with knowing you have ovarian cancer? As I said in my first posting I just went with the flow at first. Everything happened so quickly I didn't have time to think or worry about it. Everyone was so upbeat as well which helped. Last week when I saw my oncologist I thought she really didn't give me hope, beyond saying that the drug she was going to put me on had had good results. When I asked what would happen if it didn't work she just said just one step at a time. My partner says I've got it all wrong and he thought she was quite positive. I suppose I just fell apart when I heard the current treatment was no longer working. So now I've turned from a cheerful person who happens to have cancer to this old misery who would quite like to stay in bed with the covers over her head, preferably asleep so she's not constantly obsessing. Our current awful grey, miserable weather doesn't help though does it.
Back to immunotherapy. Has your trial actually started yet? Are you on chemo as well and are you doing anything else to boost your immune system such as diet. Do you eat OK? I have lost weight and am finding it difficult to put it back on. I try to eat healthily but find it difficult to eat enough calories - there's only so much veg and tofu you can eat. I've just got back from doing the weekly shop and bought a pack of Guinness. I've been steering clear of alcohol but thought it might help.
I think I've rambled a bit. It's just such a relief to have found this website. I chat to other women when I am having chemo but we don't really say very much.
Please keep posting. I hope you have a good weekend. I am going down to Devon tomorrow for my youngest grandson's birthday. He and his two brothers should take my mind off my own obsessions for a while.
All the best, Pauline
Hello Sweet-P - barney again - actually called Jenny. Very sorry to hear about your chemo having to be changed. There are lots of different drugs - it might be Caelyx, which NICE have recommended for use in platinum resistant (or sensitive) cases, but I'm not that well informed on this really.
As nobody has come back to you yet with their experience of immune therapy I thought I'd try to fill you in a bit more from my searches. First thing to say is it seems very very early days for regular treatments with immunotherapy as I see it. Most seem still to be in the research phase, although a few I've found are getting to the clinical trials stage. My own trial at a London hospital is still at a very early stage and I'm hoping I can hang around long enough to get some benefits!
Not sure how much you know? There's a web page at www.ovarian-news.org/thera_explain_immune.html which might be useful.
A trial near in description to the one I'm signed up for is described at www.researchaustralia.com.au/files/New_treatment_Ovarian_cancer.pdf An update is on www.brightsurf.com/news/headlines/view.article.php?ArticleID=21364 but they don't appear to have done a news update on the results yet as promised for DEc 2006. I'm sure there's an easier way to do these website addresses so you can use them direct but I've forgotten how! Sorry.
BACUP website can't access details of ovarian trials apparently at the moment but I have found a bit through Google - i put in 'Ovarian cancer, immunotherapy trials UK' and first of all found this website and our posts which seemed funny. On the 2nd page there is mention of Imperial College, London, Molecular Therapeutics and they seemed connected with work at The Royal Marsden and somewhere else. It might be worth accessing the Royal Marsden website tho' not sure if it will give details like you can see in the big American hospitals. Somewhere there is a website for MRC Clinical Trials Unit in the UK - will try to track it down. I did find it once but didn't save the page stupidly.
Sorry this is so long - hope to hear soon - all the best Jenny