|Why do we all have to undergo continuous "Oncologists guess" Toxic treatments without benefit?

Ive read a lot about the treatment which women are offered in USA and wondered if anyone knows where this is available in UK? There they have their individual tumours / or recurrences assayed( tested for cell death ) by reputable stablished Cancer labs such as ( Rational Therapeutics/ or the non profit making Clearity Foundation run by 6 year survivor Dr Laura Shawver) which establishes a more effective chemotherapy regime: where the drugs are targeted and personalised for that woman's individual tumour type. There is more chance of a complete response with no unnecessary toxicity with out benefit that we see constantly here, otherwise why would so many of us have to endure repeated different chemotherapy's, cycle after cycle and different sets of drugs?This seems to me to weaken our bodies and immune systems further.

Surely we all want better choices than the "one size fits all " approach when faced with recurrent disease as this clearly isnt working for some of us?

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  • I agree, I was given the standard taxol/carbo regime for 3 cycles, they knew it was low grade and thought it might not work yet did it anyway, lost my hair etc for what? Now they dont tknow what to do with me, its like they dont want to try anything else, Im at a loss too......

  • HI Sunny

    many thanks for your reply and its good to know that others share a similar view. We will keep on trying! Wishing you the happy outcome we all hope for.

    Kerr

  • Hi.

    Yes I feel like I am entering a lottery with each round of treatment. I am currently on my 4th round of chemo.What treatment have you had?How is it going? I'm feeling pretty exhausted,but keeping the beast at bay for now.

    Have not seen enough proof that the assay testing really works, have looked into it a bit.

    I think that you would be able to have it if you went to a private oncologist in the uk.As far as i know its not available on the NHS, but others on this site may know more than me.

    I wholeheartedly agree , we certainly need something better than the present treatment. Loads of progress has been made with treatment of breast cancer, but ovarian cancer treatment is still in the dark ages.

    Julie

  • Hi Julie

    many thanks for your reply and to answer your question I had the usual surgery and standard protocol Chemo that we all seem to get ,( regardless of Ovarian cancer type/ subgroup) The same treatment thats been around for at least 30 years.

    When we recurr then the guesswork comes in. Because tumour types respond differently to drugs from woman to woman we end up enduring round after round of different chemotherapies, but unfortunately its a random selection that worked for a percentage of women in a trial once, not targeted personally at our tumour type.

    I am still exploring the efficacy of the different types of assay testing and I agree with you that it probably would be available somewhere in UK privately. Ive heard there is a current trial with Cancer Research UK utilising 7 hospitals around the country to get a database of tumour types logged ( OC being one type) to try and establish better treatments for better outcomes than the present system, so clearly there is medical opinion out there that sees the need for this. A long way to go yet I fear.

    As you say the research and publicity that breast cancer ( rightly) has had gives it a much higher "profile" than Ovarian as it affects far more women, and undoubtedly has helped in the advances that have been made particularly recently in treating this type of cancer.

    Good luck and very best of everything with your current treatment for the best possible outcome!

    Kerr

  • Hello Kerr

    I hope that the old 'bog standard ' treatment has worked well for you and that you are well.

    When my cancer recurred and I was offered platinum and taxol for the 2nd time I decided I wanted platinum and caelyx instead .(international research study called Calypso says its equally effective with different but to me preferable side effects). My Dr initially said this option was not available but I got it after seeking a 2nd opinion.

    I always look at what clinical trials are available, usually i don't qualify.Most seem to be for either platinum resistant(I am still platinum sensitive at present, a good thing) or BRCA positive cancers.I have asked to be BRCA tested but don't qualify as i have no family history.A shame because I like the sound of PARP inhibitors.

    Its very frustrating and i feel that much more research needs to be done.

    However, I realise I am fortunate that the old style treatment has so far kept me alive and with a good quality of life for the last 4 years.

    best wishes to you and please let me know if you find out any more about the assay testing.

    Julie

  • I agree with all the comments. I am an early recurrer and I was told I would have gemcarbo but not to expect a remission, six months later I would need more chemo. Not good enough I thought so I went to Germany and had individualise treatment, mostly hyperthermia and low dose chemo. My ca125 dropped from 1759 to 157 after the first three weeks of treatment and I went back for two more weeks and they told me it was 74, fully expected to hit remission after another one week there. I really do believe there are lots of better ways of doing it than what we are offered now and it doesn't cost more. There isn't strong evidence for these other ways of doing it because no one is researching it, there is no money to be made by drug companies if other therapies and lower doses of drugs work. Keep questioning.

    Jane

  • Hi Jane

    im interested in your answer, thanks for reply and am so glad that your response has been so good and that your own personal choice where to get treatment was respected. You clearly share my view that there is a " vested interest" in drug companies ( who fund the trial") not supporting any view on ovarian cancer treatment that doesnt involve the traditional Oncologist choice empirical treatment.

    This is definitely the time for a change to more personalised chemotherapy regimes! Prof Ian Cree ( Warwick University) has been trying for some time to further his research into better outcomes for Ovarian Cancer women using a more personalised therapy approach.

  • Hi Jane

    It is great to hear how well your treatment in Germany is going, particularly as you had an early recurrence.As you say, the NHS appears to have little to offer under such circumstances.

    I agree , research in the uk appears to be dominated by drug companies who are more interested in making money than saving lives.

    Wishing you the very best results with the rest of your treatment. How long is it planned to last?Will be very interested in any updates you post.

    Best wishes

    Julie

  • There are trials being done into the genetic factor, I have been asked to take part so I had to give 3 vials of blood and I have an extensive form to fill out looking at lifestyle/family history etc. This is run by the 'search' team at strangeways.

  • Hi Sunny

    I took part in the same trial 4 years ago when I was first diagnosed.I am hoping that one day people will benefit from this , but would also like to see more happening right here right now!

    Hope things are going well for you.

    Best wishes

    Julie

  • Dear All

    I wholeheartedly agree with all written here. I was prescribed the standard 6 cycles of carbo-platin and Paclitaxol but due to an administrative error only received the carbo-platin. It worked perfectly well - in fact my CA125 plummeted after a single infusion.

    When I asked what the risks were of not having the 2nd chemotherapy I was just greeted with shrugged shoulders and the comment, 'Well you seem to be doing well on carbo-platin on its own'.. In that case why give us all both in the first place? In that case, why did I have to receive 6 infusions? Would 2 have done?

    I agree we can't just wait for someone to invent a one-size-fits-all cure. This is where clinical trials seem to go wrong. There are spectacular results with trial drugs but they're not developed because they don't have the desired effect on the majority of the group.

    I'd love to hear more about your experience in Germany Jane and how you arranged this. It sounds rather hopeful.

    xx Annie

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