EC TREATMENT CHOICES - TRIALS OR CONVENTIONAL CHEMO - CAN ANYONE ADVISE?

Hello Everyone - Greetings from Scotland (UK) Since my younger brother (aged 50 last Dec) was diagnosed with EC last June, I have increasingly turned to the internet like most of you have in the hope that we could find some answers which could help us in any way. I must say that although this may be of little comfort to you, the site which has impressed me most is this one and I have been amazed in particular with the depth of knowledge shown by writers particularly William Marshall and also how generous he has been with his time. Given the dreadful circumstances it is uplifting to see the level of warmth and support expressed by everyone.
I just hope that someone out there has the time to review the information which follows below and is in a position to offer some guidance. Basically the information below is the treatment regime my brother has followed to reach the stage where he must now choose one of three options for treatment. One of these,IRVALEC,is just at the clinical trial stage, the others, Taxotere and Campto, you may have heard of. Any feedback you can give me would be appreciated. It may also help you to know that through all of this my brother has continued to hold down a steady job and is one of the most positive people on the planet!


CONDITION & TREATMENT SUMMARY

INITIAL DIAGNOSIS
I attended my GP on May 7th 2010 because I was having difficulty in swallowing. I believed it was related to my Hiatus Hernia and my Doctor agreed to refer me to a specialist under my company private health cover to investigate. On 27th May 2010 I had an endoscopy and biopsies at the Nuffield hospital in Glasgow and was advised that I had a swelling in my Oesophagus that looked potentially cancerous. Around 7th June 2010 it was confirmed that the swelling was cancerous. At a later date following a CT scan, a PET scan, another scope with further biopsies, an endoscopic ultrasound, and a fitness test I was advised that I had Advanced Oesophageal Cancer. I was further advised that there was evidence of cancerous activity in two Lymph Nodes ( I don’t know where these nodes are ). Through consultations I was advised that the Cancer was inoperable as it was outside the operable zone and that I would undertake a course of palliative treatment involving Chemotherapy ( EOX ). When questioned on life expectancy my consultant advised that every case was different but that based upon statistics, with palliative treatment, 10 months to 3 years may be a realistic expectation.
FIRST PHASE TREATMENT
Medication. From 7th June 2010 my treatment has been managed by the NHS in Glasgow. On 19th July 2010 I started a course of Chemotherapy at the Beatson Hospital in Glasgow. I had six cycles lasting three weeks each. On the first day of each cycle I attended the Beatson as an out patient to receive 100mg of Epirubicin and 260mg of Oxaliplatin intravenously. I also took 2400mg per day of Capecitabine orally over each three week cycle. On the last three cycles the Epirubicin was reduced to 80mg ( Two cycles ) and then 50mg due to side effects discussed below. Over the period of Chemo my ability to swallow was reduced and after the sixth cycle of Chemo I was given combination Chemo / Radiotherapy to try to improve my swallowing. The Chemo was Cisplatin administered intravenously over night in hospital followed by 2400mg per day of Capecitabine orally at home over three weeks. The Radiotherapy was administered over ten days as a out patient at the Beatson starting on the day after the Cispaltin drip. The Radiotherapy finished on 17th Jan 2011 and I took the last dose of Capecitabin on 25th Jan 2011. I was also taking anti sickness drugs and steroids throughout my Chemotherapy

SIDE EFFECTS AND PROGRESS
Through the Chemo my white blood cell count fell on four occasions and the next sessions were put back by one week to allow the blood count to increase. The Epirubicin was also reduced in the last three cycles because of the falling blood count. My swallowing improved after around one week of Chemo and then got progressively worse over the next five weeks. By that time I could not eat anything more difficult than soups. After two cycles a scope and a scan actioned as a result of my swallowing difficulties showed that the Tumour and the cancer spots in the Lymph Nodes had reduced in size 30%. It was decided that there would be no intervention to improve swallowing at this time and the consultant advised that the number of Chemo cycles may be increased to eight. I completed the six Chemo cycles and other than the complications discussed above I only had minor side effects like tingling of the hands and feet at the beginning of each three week cycle, some itching of the skin, and sleeping an extra hour per day. I was fortunate not to have any disabling side effects. At the end of my six Chemo cycles a CT Scan showed that the size of the Tumour and the two cancer hot spots in the Lymph Nodes had not changed since the last Scan four Chemo cycles before. The consultant decided that there was no benefit in going to eight Chemo cycles. Also at this time the Consultant decided that Radiotherapy would be the most appropriate palliative approach to improve my swallowing. A week after the Radiotherapy finished I lost my appetite for a week or so and my swallowing got worse. This lasted for around one week during which my swallowing improved by comparison to pre radiotherapy status and my appetite returned. In general throughout the first phase of treatment until around the end of Feb 2011 I felt and looked well. My activity levels were down a little but I kept my weight constant, I never lost my hair, and have never felt sick. I also continued to work every weekday and lead a full and normal life. The only new symptom that remained with me at this time was a tingling sensation and numbness at the very tips of my fingers and in my feet.

ONGOING TREATMENT PLAN
: Initial plans. At the end of the first phase of treatment ( Jan / Feb 2011 ) my consultant advised that going forward for say the next nine months my condition should be managed based upon symptoms. He explained that the Tumour and the Cancer would continue to grow and that there would be no point measuring this and telling me about that growth rate as there is no realistic way to deal with it now that Standard Chemotherapy is not an option for say the next nine months. He further advised that I should contact him or my GP when I notice any changes in my health and if this occurs during the next nine months he will deal with the symptoms. After nine months or so there may be an option to go back onto Standard Chemotherapy. Over the nine month period my consultant planned to meet with me possibly every two months.
SYMPTOMS
Towards the end of Feb 2011 I started to get sharp pains below my collar bone when coughing or forcing toilet needs. I talked with my GP and met with my consultant and a CT scan was arranged. Whilst waiting on the scan I started to get pains in and around my stomach and I also completely lost my appetite. I spoke with my GP and we agreed to use a mild antispasmodic and laxative to try to relieve the pains. This did not have any success. The CT on 15th Mar 2011 showed that the cancer had progresses aggressively. The scan showed significant evidence of cancer around my stomach, my liver, my chest and along my food track. My lungs and my bones are still clear of cancer. I have ongoing niggling pains around my stomach, ribs, and lower torso.
CURRENT TREATMENT OPTIONS
My consultant has offered me the opportunity to participate in clinical trial of “ Irvalec “ being conducted at the Beatson hospital in Glasgow. If I choose not to take this option the consultant has suggested that he could apply for approval to NHS Glasgow to treat me with “ Taxotere “ or “ Campto “. The consultant has advised that there are some signs of success from the previous trial of “ Irvalec “ and that the other two options have previously had limited success and would also require approval for use. In addition to the options above under the care of NHS Glasgow I have private medical insurance that could fund my ongoing treatment.
CURRENT TREATMENT GOALS
My current treatment goals. My goal is to have a measured, dynamic, pro active future medical treatment plan that targets the best possible balance between quantity and quality of life that is available to me. Re the balance between quantity and quality of life, I currently have a very good quality of life that includes work, family, short holidays, etc. I am fortunate that if required I could stop work or work part time and reduce other activities to undergo treatments or even to live a longer less active life.
MY TREATMENT QUANDARY
In order to consider my current treatment options and to select the option that best matches my current treatment goals I need to quickly find some measure of the success potential for those options available through NHS Glasgow. I also need to find out what other options may be available to me from the UK private health care system and have some measure of the potential success of these. To this end I am conducting some research via the internet and would welcome comments from others who feel they have past experience that could help me with this.