Just poped on to the BCC forum and found this totally amazing post by a woman who has secondaries and has been on Herceptin (my wonder drug) for the past 10 years.
Well here I am again, one year on, updating that I am still here and well. That's ten years since secondary diagnosis of mets to bone and liver and nine years on Herceptin as my only treatment (just had injection number 157).
I do have other exciting options on the treatment horizon too, the first being subcutaneous Herceptin. Not sure if this has appeared on the forums (not be here for a while) but in summer some time we may have the option to have our Herceptin by subcutaneous injection that the patient will be able to deliver themselves at home - or more importantly on a long holiday away somewhere!!! This will be a bit like a diabetic with an epi-pen, but bigger more like a box. Just think, it will be like slipping the leash from hospital - we will be free!
Secondly, and this is really scary, there is the possibility of stopping Herceptin altogether.
Some long term Herceptin patients (8 years plus) have come off the drug altogether with, so far, no re-occurrence. This is mainly in the US but there is one centre in England that has started doing the same. Obviously the risks are unknown and I shall be in the 'wait and see' category for some time to come I suspect, this is all so new and groundbreaking. There is even (dare I even write this......!) whisperings that these women may be cured. We secondary BC sufferers have always been told that we can only ever be NED and never be cured but oncologists are daring to voice such a possibility. Of course we are only talking of a small number of women (only 30 percent, or less, of breast cancers are HER2 and respond to Herceptin and of that number a possible 10 percent seem to survive long term) but I dare to dream - dream of a disease free future, for myself and all my sisters out there.
and a few posts down on the same thread came this brilliant peice of writing by another fab lady on the BCC forum (I'm posting this because it helps me keep this valuable information somewhere I can access it).
Having read some of the more recent studies about Herceptin, I think you're right in that the main value of Herceptin is now thought to be it's ability to flag up cancerous cells so that the immune system can recognise and attack them (as we all know under normal circumstances the immune system does not recognise cancer cells). It was once thought that Herceptin worked by reducing the number or receptors on the surface of the cancer cell, but research has shown this is not always the case, as cancer cells can actually coat themselves with a substance that prevents the Herceptin reducing the number of receptors.
The main problem with Herceptin though is that it doesn't work for all patients There are some studies which suggest it only works for about 40% of patients, and this is why many Her2 receptive patients go on to have Lapatanib. However, there is a new generation of Herceptin based drugs that have just been approved by the FDA in the US called Kadcyla (they are being trialled here under a Trial name). These drugs will hopefully make Herceptin work for a larger number of patients, and will overcome the ability of Her2 cancer cells to coat themselves. They work by combining Herceptin with a very potent chemotherapy drug and an another agent. The drug works by using Herceptin as a vehicle to locate and transport the chemo drug. Once located the agent releases the chemo directly into the cancer cell. So less damage to healthy cells, and fewer side effects. I hadn't heard of subcutaneous Herceptin, but if it can reduce the incidence of heart disease it sounds great. I do think though that Kadcyla is going to replace current Herceptin within the next couple of years, simply because it will be able to treat a greater number of patients.
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