You call it

I know that herceptin is usually given for a year in the UK. I know that the decision about whether to permit herceptin to be made available through the NHS is down to NICE (the National Institute for Health and Clinical Excellence). I know that NICE has no say over the length of time that herceptin is given for – they accept the recommendation of the manufacturer, Roche.

I know that Roche recommend giving herceptin for a year and they have the stats to show why. I know enough about the pharmaceutical industry to be a little bit sceptical about drug-company-sponsored trials. I know that a study in Finland has shown herceptin to be effective when given for nine weeks. I know that trials are going on looking at the efficacy of herceptin when given for 6 months versus a year, and one year versus two years. I know that some small-scale studies have shown that 6 months works as well as a year.

I know that herceptin hasn’t been around for long enough for anyone to know what the long term effects of the collateral damage to the heart might be.

I know that herceptin has been shown to be mightily effective in preventing the return of breast cancer. I know that the trials that have shown this effectiveness has been where herceptin has been given at the same time as regular chemotherapy, rather than after it. I know that herceptin has been shown to be slightly less mightily effective when given subsequently rather than concurrently.

I know that “it is likely that patients with “small,” especially hormone receptor-positive, node-negative cancers, may derive little absolute incremental benefit from the addition of trastuzumab to chemotherapy ± hormone therapy.” I didn’t figure that out myself. Edward H. Romond, MD did, and he wrote about it in a punchily titled article “Adjuvant Treatment of HER2-Positive Breast Cancer: Refining Clinical Use of Trastuzumab in the Adjuvant Setting”. (Trastuzumab is the doctor word for herceptin.) As someone who had a hormone-receptor-positive, node-negative cancer I found this comment especially interesting, although I note that the definition of ’small’ varies and that Dr. Romond’s conclusion is that pending further information, a year of herceptin should remain the standard of care.

I know that many doctors take a belt and braces, better safe than sorry, herceptin’s not as bad as chemotherapy, it can’t do any harm approach with herceptin.

I know that I don’t want another PICC line, or a Hickman line, or any bits of bionic medical kit, if I can possibly help it.

I know that I get a little bit achier with every treatment that goes by. I know that the aching as not as bad as it was during the nadir of chemotherapy. I know that it’s starting to get in the way and I know that I’m starting to get a little bit snappy because I am in pain all the time.

I know that my heart often flutters and my chest sometimes hurts.

I know that I really, really don’t want another dance with cancer.

I know that I am concerned that because I am run down and in pain I could make the easy decision and not the right decision about whether or not to continue with herceptin.

I know I’ve got another 10 days before I see the oncologist to discuss this. I don’t know whether more time will help.

I still don’t know what to do. I don’t think any of us do, really. I feel as though flipping a coin will be as good a way of deciding as any other.

Heads or tails, anyone?

4 Responses

  1. Cynthia says:

    Well. That’s about as tricky as they come, Stephanie. Am reverting to email for the rest….

  2. Joanna Moore says:

    My cancer is different from yours and the protocol in the U.S. is different than the protocol in the U.K. I am on Herceptin forever or as long as it remains effective and does not cause cardio-toxicity. But the standard here is 12 months, not forever. (I have Inflammatory Breast Cancer and there was node involvement before chemo.) I have a smart oncologist and she feels that Herceptin is a bit of an insurance policy. Here is the interesting part of my experience. I have now been on Herceptin for 23 months (I had it with chemo and then every three weeks ever since then.) It used to make me tired and achy and sick for several days after infusion and it used to make it hard to sleep through the night. Now I have almost no side effects. I think that I was run down from chemo at the beginning, but now my body can handle it. I just wanted to let you know that the side effects may diminish with time.

  3. Elsewhere says:

    There’s a lot of things you KNOW…
    But does either heads or tails make you FEEL anything?
    Sort of an inner-voice-intuition-kinda-thing?
    Wish I could be of more help.

  4. DJ Kirkby says:

    Stephanine…what a conundrum. I can’t advise you of course, but am wishing you a happy solution. x

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