OPA Charlie's Circle

Chemo treatment advice

Hello all ,and, seasons greatings

I have terminal esophageal cancer for which I was given 9 courses of Xeloda over a nine months period.

The chemo didn't help very much and inflicted Peripheral Neuropathy (PN) in my hands and feet.

Now the cancer has spread to my liver and lungs and the treatments I'm being offered is, first, a trial with Xeloda with Trastuzumab and if that doesn't help, Irinotecan.

The onc assures me that neither of these treatments will affect my PN.

Does anyone have experience with these forms of chemo and what results have you experienced.

Additionally, I'm afraid the side effects of diarrhea and vomiting might weaken me more than I already am.

The alternative is pailliative treatment and pain management.

I'll be very grateful for any advice or information.


2 Replies

Hi Charles,

Seasons greetings to you as well. Just sorry to hear what you're going through.

I'm currently on six 21 day cycles of Herceptin, Cisplatin and 5FU. This is not identical to you but similar. (I've had the Ivor Lewis op to remove the primary tumour - but found out soon afterwards that it has spread to my liver.) When this current treatment regime ends I'll continue on Herceptin for as long as it is able to keep things under control.

I'm surprised that you've had the PN just with Xeloda - as it is more likely with some of the other chemo drugs - eg cisplatin (but I'm no expert). The 5FU I'm now on is similar to Xeloda - although its administered as an infusion over 5 days as opposed to the tablet form that I'm assuming you are on (which I was also on pre op). I too find that diarrhea is a problem - but try to keep it under control with Immodium. I keep the sickness under control with the various drugs I take home with me from the clinic and the main longer term one I use is Domperidone. I tend to take that now for almost every day of the 21 day cycle... although I do try to reduce the dosage during the final week. I prefer Domperidone to the Metoclopramide I was originally on as the latter made me a bit "jittery" during the day.

As for Herceptin (Trastuzumab) the main side effects I'm aware of were during the initial infusion - whilst in the hospital - I now get an antihistamine infusion before the Herceptin to counter the side effects I had originally - which were very acute shivering and flu like symptoms during the infusion. The last infusion went without any issue for me.

I must admit I'm looking forward to when I will be on Herceptin only - given its minimal side effects.

I also know of another guy who had a lot of secondary cancer in his liver when first diagnosed with OC (so it was not operable) - and he was put onto the same treatment I'm now on. He then had over 3 years on herceptin before it stopped being effective and by that time the liver scans were almost clear. He's now on another similar drug as a trial and the primary tumour is responding well to it. So I'm using him as my benchmark - and hope that the herceptin will be at least as successful for me as it has been for him. Hopefully it will be able to help you too.

Are you being treated in England or Wales? The reason I ask is that Herceptin is permitted for the treatment of metastatic oesophageal cancer there, but the situation is not necessarily the same in Scotland or Northern Ireland.

I wish you every success with your long term treatment, keep as positive as possible and please do keep in touch.

Best wishes



Hello Martin. Thank you for your advice and information. It is very useful. Reading it has helped me prepare for what's in store.

I live in Denmark and am being treated here. The health care here is pretty much the same as the UK NHS.

I'll keep in touch when I've decided which treatment I choose and how I get on with it.

I have a stent fitted to help me with food. So everything is blended and quite boring.

Best wishes to you and your family




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