How the f ###????

Hi All,

Hope everyone is having a better day than me . Got results of latest C.T to see if radiotherapy has done any good. News is it has done Sweet F A !

Bugger All ,Nowt , Zero, Zilch .

Results are as follows .,there is now two nodes in my chest ., two in my tummy ., the right kidney looks diseased and the original nodes in right groin and pelvis are bliddy bigger !!!! . How the f ### ?

Apologies for the naughty words , but I'm doing a lot of that lately ....

Anyway , our next port of call is topotecan . Depending on kidney function test

.I could say I'm angry , numb ,disappointed etc......I'm totally lost for words

So fingers crossed , again .

Suzie Que xxxxxxx

13 Replies

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  • Hi Suzie,

    How long remission did you get from First Line? I hope you do not mind me saying, but I think I would be going for a second opinion before going for Topetcan.

    I feel gutted for you. I am afraid I am used to bad news but something like radiotherapy you would have thought would have been radical enough to do something.

    As you may know I have it in my liver, peritonium, bowel thickening and in my breast so you are not alone with the rampaging monster.

    #@!! **@: is all I can say...for both of us.

    Love Lizzie

    X

  • Hi Lizzie,

    I got roughly 5 months remission from first line . Why do you suggest I consider a 2nd opinion before going for topotecan ? My head is in the shed at the minute and I can't think clearly at all .I don't know which way to turn .

    Love Suzie xxxx

  • Hi Suzie,

    Maybe 5 months is good...of course I am not a medical expert, but it all sounds a bit too conventional to me. I got suckered into caeylx which is standard second line, topetecan is standard third line as caeylx is in short supply. BUT having spoken to my Professor in London, I think weekly taxol and maybe the Rotterdam Regime are more hard hitting second line treatments the top ovarian oncologists London are using. Rotterdam may not be any good for you because of your kidneys.

    I don't want to unnerve you, but if you have a week or so to decide and can do a trip to London you have nothing to lose. I would ask ovacome for the lead ovarian cancer oncology experts in the UK or feel free to message me and we can discuss.

    As I say, this is just from my experience, if you are happy with your oncologist's judgement, then ignore me

    Love Lizzie

    X

  • I wish I could bottle and sell your advice Lizzie. It's never a bad idea to question decisions and the information you give us is really helpful. x Annie

  • Hi Lizzie ,

    Crikey, you are a mind full of information , .I will be honest Lizzie , I will go with my Oncologist , hopefully he has made the correct choice on my behalf. Time will tell. But like you say this disease is so complicated , but individual. What is right for one , might not necessarily be right for any other . Will they ever get it right for the first line , I would like to think so , Again , only time will tell ..

    Love Suzie xxx

  • Hi Suzie,

    All the very best and I agree each cancer is so individual. Mine has not responded to ANYTHING except the op yet and yet other ladies can use carbo/taxol multiple times and keep the monster under control. As you say, one day hopefully they will take a biopsy and say which chemo will work for us as individuals...I must admit if I had thought about it before I had cancer myself, I thought they could already do that! What a disappointment this all is. BTW did some more retail therapy today to counter the pouring rain.

    Love Lizzie

    X

  • Suzie, I'm so sorry for your news, a lot top cope with, just hope once your head stops spinning you can come to terms and carry on the good fight. Sorry again Lots of Love Sue x

  • Hi Susieque

    Not good news. So sorry.i agree with BusyLizzie .Yo have nothing to lose by getting a 2nd opinion.I was surprised how quick and easy it was.Where are you?

    Thinking of you

    Juliex

  • Have you thought about assay testing to see which chemo's you are likely to be sensistive too? Oncology in the uk doesn't use it but it's widely used in the US and may swear by it.

    Jane

    x

  • It is an interesting subject indeed. The 3 oncologists I have come into contact with (my own and 2 top ovarian Professor's in London for second opinions at various points) have all said that they think assaying is a long way from being useful - tests in a petra dish are different to those when in the body. When I had spread to my breast, the surgeon however said she had come across a lady with breast cancer who had no response to anything but went to the USA for a biopsy and assaying and had a good response to the resultant chemo. Problem as usual is it is all anicdotal - no statistcs. I know Professor Ian McCree (now at Warwick) is looking at doing this in the UK but I don't think ovarian cancer testing is available yet. I have come across a practise which does it (privately) but it is not covered by your private health insurance.

    Love Lizzie

    X

  • Dear Suzie

    Don't let the bastard disease break your spirit. This is a bloody awful setback.

    did your oncologist talk through the options? If he/she didn't you could always give ovacome a call.

    If you are feeling up to it, go for a good shopping trip in the next few days- it will give your brain a holiday from 'thinking cancer.' It works for me.

    V fed up on your behalf.

    Love Sarah

  • Dear all, What an interesting debate. I'm very sceptical about the argument not to pursue something because there is no empirical evidence of its efficacy. It seems to me that doctors have become drugs barons. When I questioned why drugs were used in preference to more holistic remedies I was told you can prove things with drugs. Example: Pain in the Head, Aspirin, no Pain, Proof it works. However the proof doesn't take into account that aspirin makes your stomach bleed so the current paradigm is to resolve one problem and create another.

    Chemotherapy is a very dramatic example. I'm hugely grateful for the treatment I've received but I think it's a shame research seems to focus on drug solutions. If we took a broader approach we might have a health service rather than a sick service.

    Ooooh I'm a grumpy old bat this morning. Will have to post some of those emoticons to cheer myself up. ;-)

  • Hi Susie Que

    Sorry to here your bad news, I wish you all the best with your next treatment, which ever way you decide to go.

    Love George x

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