Just had an onc appointment. At my last ctscan in September there was no sign of disease, but the results from the ctscan a fortnight ago are really bad. It's spread to several places in my liver, and there's a large tumour just south of the liver and a smaller one at the top of the vagina. I've gone from a 1c to a 4 just like that.
They're offering me taxol for 12 - 18 weeks, but with a low expectation of it working. In the last fortnight I've had a chest infection, a urine infection and an arthritis flare-up, all of which made me feel grotty. Realistically it seems I will not be able to cope with chemo so frequently.
Oddly I'm not down-hearted as I've just started feeling better following anti-biotics and extra meds for arthritis.
Fools paradise probably.
We live at no. 10. If it had a number, the local hospice would be 20. Don't want to book a bed there for a very long time.
Christine
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Sorry to hear about your troubles Christine. I hope that you continue to feel better and that the meds keep the pain at bay for a long time to come.
Love & best wishes
Mary xxx
Hi Christine,
So sorry to hear your bad news, thinking of you, and sending you my best wishes love x G x
So sorry, you must be feeling awful. But all is not lost. I have heard of women who didn't respond to initial chemo but responded to another regime. There's been several mentions here about the Rotterdam regime for women who are platinum resistant - it is effective but very tough. It might be worthwhile to ask about this. It might also be worthwhile to think about getting a second opinion. Plase call the Ovacome helpline - they are better able to give advice than any of us,
Ovarian cancer is very unpredictable. But there are several new treatments. Hopefully you will find something that works for you.
Also, if you haven't already, read drdu's blog about ibuprofen. I think drdu recurred quite quickly after initial treatment, but she's been in remission for 22 months after taking NSAIDs. Hopefully she will chime in with words of encouragement.
400mg 3xday, make sure you take Opramazole 1 once a day to protect your stomach. Check with your GP first so that you are not taking anything else that may not be compatable.
I'm stage 1V and still have disease, 1st line didn't get it all, but feeling fine at moment and asymptomatic.My GP prescribes brufen for my athritic hands so I just make sure I take them now.
Hope your infections go soon and that you start to feel a bit better
Sending you my best wishes Christine and a great big hug ((((xx))))
Love Angie xx
Dear Christine
How awfully upsetting - but try to stay positive and definitely don't book that bed. Like you say, just feeling better is good for now. See what comes next, and we will be here whatever does
Love
Sue xxx
Dear Christine
Sorry you are going through this and feeling so unwell. Have you talked to your oncologist yet about whether you will be able to tolerate weekly taxol? Presumably it will be at a lower dose. I had weekly taxol/carbo for 18 weeks. Until the last 3 or 4 it wasn't too bad.
So sorry to hear your news, sending you my very best wishes
Jan x
Dear Christine
If you can take the taxol I would have a go. I have Rheumatoid arthritis had it for 30 years. When you have the taxol you get steroids pumped into you before the taxol. Believe you me the day after everyone disappears the cry went out its the steroids.It was great and it helped my R/A after being off taxol, for only 2 weeks today I have taken some prednisolone today. how my body has misses the weekly boost. Not sure if you have R/A or arthritis. thought I would give you my thoughts.
It's R/A and I've had it for 44 years since I was 17. It has never died down, so there's probably something intrinsically wrong with my immune system. I have never gone anywhere, even for a day trip without emergency drug supplies and dressings for my feet as prompt attention can prevent worse happening. In 1999/2000 I had both knee replaced and have rejoiced in the freedom they have given me as previously I needed a wheelchair for all but the shortest distances.
To say I had dreaded being totally incapacitated by the R/A is an understatement. The last time it happened we were in Portugal, and I went from realising things were going wrong at 20.30 to being unable to lift a cup to drink and unable to disentangle myself from the bed clothes at 22.30. Trebling the steroids meant I made it to the plane 4 days later.
It's the way R/A reacts to any other illness that is tough. I've tried to avoid moaning about it, but people just don't realise how ill you can feel with it. Lots of pain from swollen joints and feeling that you're about to go down with a really bad dose of flu. It has sapped my energy.
I know exactly where you are coming from You cannot explain to people how you feel and you just end up being quiet. I think that only fellow suffers know where you are coming from.I found when i was pregnant it all went away but came back with a vengeance. So a permanent pregnancy pill would have been ok..Over the years there have been many potions and operations.When the Docs said we have no cure for the OC but it will be a chronic disease. I thought of the R/A and said I like chronic!! I think that because of the amount of medication over the years when I started the Chemo my body thought heres another .cocktail mixture. I think because of this after several combinations of Chemo I have had I have been very fortunate with having no after effects, so in a funny way has the r/a helped me in this battle. All in the mind!!
Dear Christine I am so sorry to hear that you have had a recurrence, but pleased that the antib's are helping to get rid of the infections. Urine infections make you feel wiped at the best of times. Keep strong and remember we are all here to give you support
Dear Christine, I'm sorry to hear of your latest problem, but glad you're beginning to feel a bit better. As so many other friends say, we all hope there are some more options that can be investigated.
All the best to you. Sending you big hugs and all the very best of wishes for continuing to feel OK
Just seen your news ...... as catching up ..... Christine I am so very very sorry to read your post to see that the Carboplatin has not worked .
I do so hope you will feel a little brighter soon after your infections and I know you will stay positive to seek out what is going to be the best treatment for you .
Dear Christine, ask you oncologist if you can have Caelyx, as it's back on the market. I was in your same situation in June 2011, no evidence of disease in January, then 4 months on cargo-taxol, only to find a massive spread of tumours in my abdomen after the June CT. I was put on Caelyx, 1 dose once a month and apart from mouth ulcers I was fine. 6 rounds of it were followed by 6 months remission.
So sorry you have had bad news. I am a relative newby to all this but from what I have read on here there are many more treatments which may be available to you. It may be that yourother medical conditions rule some of these out, but you can always ask for a second opinion, it may be that another oncologist has more experience of cases like yours.
Stay positive and remember that we are all here for you
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