Oesophageal Patients Association
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We are starting a new poll, suggested by JohninKent, about whether herceptin was offered during treatment. Here is what John says:

Trastuzumab, or Herceptin was approved by NICE in November 2011. This is a drug that was developed for breast cancer but passed the value for money criteria to be approved for stage 4 metastatic GI cancers if they tested positive for HER2. Initially very few people were given it because they did not know of it and worse neither did their doctors. It is proven to be effective and prolongs life and patients should automatically be tested. A survey published a few weeks ago said that a large percentage of doctors were not routinely conducting tests for the best treatments for cancers in general and I wondered how this applied to EC but the main reason is to make sure people are aware that this treatment is available. This is especially important for people who have metastatic cancer and also for people like yourself who are approached for advice and guidance. I have plenty of anecdotal evidence that it is not routinely offered. I was only given the test after asking for it and my cancer was found suitable for treatment. This applies to about 25%. Again anecdotal evidence shows the situation is improving. So that is what I am trying to do, ensure that patients and supporters like yourself are aware of Herceptin.

2 Replies

Not sure when my husband was tested for it and if we were aware he had been tested. When we dwindled thru most of the chemo's available to him and none were aiding in controling the mets they offered it him.We learned he tested positive for it. But we waited until the very last chemo was not working and added Herceptin to it. The only thing is we learned Herceptin has never been given with this type of chemo that my husband is on. At least that is what I recall the doctor saying, but you come out of the office with your head spinning. They told us Herceptin is not really benificial alone, but only with a chemo, and only adds a small amount of time to life expectancy.


Herceptin was tested with cisplatin or oxilaplatin and xeloda. When I was going to be given Herceptin they also planned to give it with cisplatin but as I have neuropathy from having cisplatin last time round so I asked for irinotecan instead. They said that only have experience of giving it with platinum drugs so we compromised on carboplatin and xeloda. The american cancer network just says give it with chemo without defining which regime. After the chemo has finished, 6 or 8 cycles usually, herceptin can be given by itself until the cancer starts growing again. The trials did give a median survival benefit measured only in months but median survival without herceptin is only measured in months anyway so a small benefit may mean living twice as long and there is a long tail to these medical statistics so many have two years or more. The full details are on the NICE website if you want to look them up.


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