My wifes 1st Oncologist basically gave up on her after 2 lots of chemo and said nothing else can be done. I wouldnt accept that and we got a referral to another hospital/Oncologist who started a chemo combination for 3rd line treament, which was exactly what we had asked for before with the 1st Onc, who wouldnt give it as they said it wouldnt work. Well it has worked to an extent anyway, tumour shrinking, CA125 reducing (still too high but going down) - i do wonder though how many people would/have just accepted what an ONC says and..........
Not the place to name and shame anyone, because frankly i think budgets etc have a major role to play in what treatment you get and how much, but would be interested to see if it is a recurring issue or not.
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thehusband
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No direct experience of this, but Macmillan have a legal dept and may offer advice.It is a scandal that so many decisions are budget-driven, which they may try to see what reaction they get, I suppose.
My message to you is keep fighting! Get all the info and advice you can, make a real show of writing down notes in mtgs with Oncologist (I tried saying" so what you're saying is ....", while conspicuously taking notes) which made them realise you are documenting the process --not in my case but a near relative with a different type of cancer.
We are all different, we all react in different ways to different treatments and your wife deserves the very best, which you already know
I have not heard the dreaded words yet that the cupboard is bare. I had no success with carbo/taxol (6 cycles, 3 weeks apart) and currently sampling the delights of caeylx (6-8 cycles, 4 weeks apart). I will find out in the next week or so if we are having any joy with it. Can I ask which regimes your wife has had and is now having? Also when you say they have not worked, is it because here CA125 never normalized, or did it normalize but then go back up again within a few months?
Love Lizzie
X
Hi Husband,
As Lizzie says, so many things can affect the decisions. I'm glad to say that my onc has never given up on me, despite not expecting things to work! My last chemo (round 5!) was a stab in the dark, and when I went for treatment 1
I was in a wheelchair, when I went back 3 weeks later and walked through the door he was speechless, as were all the nurses, and I've had a remission as well, all be it only 3 months, which is amazing,. He had twice told the hospice to contact me, and only gave me 8 - 12 months 2 years ago, but as yet he hasn't said NO more.
Obviously a fight in the circumstances is worth it, a friend of mine fought that decision many years ago, ended up at a London hospital and is still here 25 years later.
Good luck to you and your wife.
Viv
Well done for arguing the decision. I do think we are too obedient to doctors (culturally), and they often overlook the damning power of the negative diagnosis. Just to balance that; I also have some sympathy for the individuals working under cost pressures, and the awful imperative to attract sucesses and deflect others that the health service labours under.
I am sure that daring to continue to hope against the odds is a powerful tool for anyone dealing with a poor prognosis of any sort.
My GP dared to use the 'c' word to me the other day - no; not that one: 'cure'. When I pointed it out to her she hastily said (as if she'd used the first word you thought of) 'perhaps I shouldn't'. I contradicted her strongly, because I think that if more doctors talked about cures and optimism, there would be some 'magical' improvements for patients who would be released for a little from the heavy burden of expected disease.
I thankfully have never come across having to seek a 2nd opinion - well my Oncologist here sent me to the RM as he wanted me to get a 2nd opinion in my mother tongue, bless him his English wasn't so good in those days. The comment I got from the RM was my treatment here in Spain had been exemplary.
I am fortunate I have a wonderful Onc. I can't praise him enough. He is doing everything in his power to keep me going with stage 1V cancer and when one treatment fails he always says ' I have plenty of ammunition out there yet for you'. In fact he admitted the other week some of my treatment has been tailor made for me, who can ask for anything better than that and on the Spanish State system too.
I wish you and your wife luck, her cancer marker is going down - wonderful news. I think a lot of us ladies here find we have to be pro active with this cancer, I am forever going to my Onc. with details of new drugs - he doesn't mind, he tells me point blank whether or not they would be suitable for me or are available here in Spain.
One thing I have realised, don't rely completely on your Onc, do some ground work yourself.
Thanks for your responses, appreciate it. Lizzie she started with the full hysterectomy followed by 6 lots of Carbo/Taxol. Her CA125 never went below a few hundred. Then had a few months off before pain started again, had a scan which showed it was growing again. Had 4 lots of Taxol by itself but CA125 kept on rising through it.
That is when we were told no more can be done and we should sort out a hospice etc and that my wife only had a few months left to live.
Well as she was basically ok, well ok in so much as we could, and did, still do things and go places, then we just could not accept it. I asked for gem/carbo or caelyx, told nothing would work. Then eventually got a referral, saw the new Onc who said 'lets try gem/carbo', we hadnt told him that we had asked for that before, and now coming to the end of the gem/carbo regime (finish end April) and last scan shows significant reduction in growth and good reduction in CA125. Still way too high but heading South....
So thats where we are. My gut feeling is when it has finished the CA125 will still be a few hundred BUT possibly/hopefully my wife will have some good months off before any symptoms raise their ugly heads again.....much better than the alternative which the first Onc said.
When/If symptoms come back then we are confident that this Onc will readily suggest and try another chemo combo, never know one day we may hit on the right one and get a few years off.
So good luck one and all and fight the good fight. x
Thanks for the details. My CA125 never normalized either. Lowest I went was 90 then started climbing again. Topatecan is another regime which can be tried and of course she could always be referred for a trial. Has she been tested to see if she has a BRCA1/BRCA2 alteration e.g. if there is a genetic link?
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Am I understanding this right? and has anyone had G-CSF before?
Allergy to Taxol
1st Recurrence
Possible treatment options
ANYONE HAD THIS ON CARBOPLATIN?
