Saturday, 4 July 2009

I Understand Now..... Herceptin

Mike Peters, Rhondda Rocks - Go for it Snowdon Rocks 3 - 4th July 2009

My oncologist is definately not very good at communication!!!!!

This morning, I received an information pack from my oncologist all about a trial called Persephone. It is a lifestyle study on women receiving 6 months of herceptin versus 12. It is NOT a clinical trial, it is to find out if your life is better having 6 months of herceptin or not.

Luckily, my best friend works for a major pharmaceutical company and has worked on many cancer drugs and read the paper for me and explained it to me. I am not unintelligent, I am just not familiar with "medical speak" - although I should be shouldn't I?

Her advice to me was "don't go on this trial, have the 12 months herceptin". It is what I had decided anyway. This is my life, I don't want to risk the cancer returning do I?

However; it all became clear.... that is why the oncologist was worried about dates!

It was about money as well! Those women taking part in the trial will have their herceptin paid for.

My friend has just departed for TAKE THAT at Wembley Stadium, London. I should have been there but decided I just couldn't cope with the journey to the other end of the country, concert, over night stay then return......

Also: as I type, Mike Peters is climbing Mount Snowdon for Snowdon Rocks 3 - I couldn't make that either!!!

PS: Happy 4th July to all my American Friends


  1. Sounds like you made the right decision! I would have done the same - it is all about preventing a recurrence as far as I am concerned!

  2. Makes me wonder what might be "in it" for your oncologist if she was interested in you participating in this "study" (which is so much different from a clinical trial). I would also think that she would not recommend you do this if she didn't feel that you would still benefit. There are very few doctors who are willing to put a patient at risk. Still. It is up to our doctors to make sure that we understand clearly what they are telling us. I'm glad you have a friend who was able to help you sort it out.

  3. Hi guys thanks for your comments. I think that I was probably selected for invitation to the trial because;

    1. my cancer had not spread to the nodes
    2. I have a history of depression (following my family break down and death of my brother then postnatal depression after Harry

    I think it is the financial aspect that may interest my doctor as Herceptin costs the NHS £35,000 per year and if this gets paid for by the study then it is a good advantage for the trust.

    However, I am only interested in longevity of my life and US research being done at the moment is looking at extending the duration of herceptin from one year to 2 or 3

    The Scandinavian study is a one off and a small trial, I trust the trials over the last 10 years

  4. Cancer clearly complicates life and leads to all kinds of difficult choices.

    And takes away a great deal of the pleasures lie has to offer.

    However, we need to keep a firm eye on the future and the return of those options.

    Hang in there.


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