Henry, age 69, retired and now living in France, inoperable adenocarcinoma of the pancreas and mets to the liver

PANCREATIC CANCER TREATMENT IN FRANCE

Cancer of the pancreas is not an instant death sentence

Symptoms of this are as follows.

A dull ache in the abdomen beneath the lower ribs, not relieved by anti acids but slight relief by aspirin or paracetamol. The discomfort is often reduced by leaning forward.

Other indirect symptoms may be evident, eg, numbness in fingers and toes, yellowing of skin, unusual and unpleasant body odour which is not like perspiration odour, irritability, fatigue, loss of appetite and loss of weight. These secondary symptoms will be explained later.

In March 2006, after suffering unbelievable abdominal pain, an ultrasonic scan showed several problem spots 'requiring further investigation'

Within a week a full scan showed a massive lump on the pancreas and three spots on the liver.

A few days later a biopsy confirmed my worst fears, cancer of the pancreas and three metastases on the liver. It was adenocarcinoma, cancer of the worst kind. I was told that surgery and radiation were not options and that the only effective treatment was chemotherapy and that this was no cure, just a method of reducing the cancer to a manageable level. The cancer was described as "terminal".

I was prescibed morphine sulphate to control the pain. Slow release morphine sulphate morning and evening plus smaller doses of rapid release when required.

In a state of shock and panic I consulted the internet for all the information I could find on pancreatic cancer. There was an enormous amount to plough through but in general the results were not encouraging - expectation of life was limited. 84% expected to die within a year and for heavy smokers, within just a few months.

My first reaction was to think up ways for my wife to carry on without me, arranging for all unfinished DIY to be completed, showing her how to do those jobs which had always been mine.The problems were overwhelming.

After the initial stage I began to take hold of the situation. What of the other 16% ?

How long did they live ? What is meant by "Terminal", after all life itself is terminal?

Slowly my investigations revealed that there were some people who still lived after eight or ten years and it was possible to live even longer.

Supported by this knowledge I embarked upon a course of chemotherapy. This, however, was not as simple as I thought. An implant had to be inserted on the right side of my chest, just below the skin and a tube inserted and connected to the jugular vein in my neck. The chemicals were then administered by simply "plugging in". The reason for this is that the chemicals are so agressive that passing through a vein in my arm could cause the vein to collapse. The jugular vein is very large and flows directly to the heart.

Six days went by to allow the insertion scar to heal and the stitches to be removed and I was ready for my first chemo session. I had a short examination by an oncologist and then I was sent to the chemotherapy room. I was warmly welcomed and made at home with the other patients, about fifteen men and women of all ages, all connected to what looked like a confusion of bags and tubes.

Some looked fit and healthy and one or two looked as if the end was near but all were friendly and cheerful.

I was very impressed with the hygiene procedure. It was just like an operating theatre as seen on TV but set up in a large lounge. Gowns, gloves, hats, masks, sterilising fluids and a trolley which was laid out in the most meticulous manner.

The treatment involved two afternoon sessions, the first one of about 45 minutes and the second day about 2 hours 30 minutes. The first chemical was Gemcitabine and the second Oxaliplatine and after each infusion a small amount of steroid was given to avoid inflamation and shock. Before and after the treatment the system was flushed through with a saline solution.

Nothing to it I thought, next session in two weeks time.

I was warned that I would be unwell for a few days after the second day's treatment but I woke up feeling fine. No problem I thought.

By the end of the day things began to change. It was as if I had been hit by a nasty case of influenza. Headache, shivers, nausea, extreme fatigue, no appetite, feeling very miserable. Even the smell of food cooking caused nausea.

I was provided with some anti-sickness tablets which worked reasonably well but I still could not face food and the side effect of these anti-sickness tablets was more headaches.

Paracetamol helped the headache problem but only for a two hour stretch so I found it difficult to stay within the recommended daily maximum dose. I stopped taking the prescibed anti-sickness tablets, bought something similar from the chemist and the frequency of headaches was reduced.

After four days the symptons had cleared but it left me exhausted for a few more days. Loss of appetite caused loss of weight.

The treatment, two chemo sessions every two weeks, slowly began to have an effect. Less pain and a reduction in morphine dosage. The after effects of the chemotherapy became less severe but still lasted for four days plus another two days feeling exhausted.

Six months after the first scan I had a second one. The results were good, very good.

The cancer was less than half the original size, my appetite had improved and I had regained my original weight.

Full of optimism the specialist decided to reduce the chemotherapy to just one dose of the less powerful chemical. .

In two months it was clear that things were not going well. A blood test showed the cancer count was up and I was aware that the pain had returned. A scan showed things were not going well and I was put back on the original chemotherapy double treatment. By returning to the original treatment of two chemicals every three weeks improvement was clearly evident after just the second treatment. Still the same illness for four days then two days to recover and then I was fighting fit, able to do gardening, DIY and motor repairs to prepair my car for the MOT test.

The following are observations made by me during my illness and treatment.

I am not a doctor so I do not claim any authority for these findings.

Loss of weight because of lack of appetite was approached by constantly snacking on the most nutritious food I was able to eat. It started with cheese biscuits, just something I fancied, followed by yoghurt and fruit purée and I forced myself to take a bite of a hard boiled egg. It was a start but there was no way I could face a full meal. I thought that most people who are overweight because they are constantly snacking so this must be the way for me to gain weight. Slowly and with great effort and determination the weight was regained. Large meals are still a problem.

I was prescribed special high nutrition food and a very large box of tins and cartons was supplied by the chemist. They were all quite disgusting in taste and texture so I persevered with my own plan of constant snacking on what I could manage to eat.

Overeating can cause a very painful problem. The secretions from a healthy pancreas balance the acid from the stomach and duodenum and the enzymes then assist the digestion in the small intestine. After a heavy meal is passed through the stomach and duodenum the small intestine, with reduced pancreatic fluids, just cannot cope. A massive back-up of partially digested food takes place and the small intestine becomes blocked.

This produces intense pain as in my stage one which started the investigation. A 48 hour stay in hospital with strong doses of morphine and no solid food, just clear soup, fruit juices and laxatives put things right.

I would suggest that any unusually heavy meal should be followed by a dose of a mild laxative.

Limit the use of paraffin or any oil based laxatives because they reduce the effectiveness of small intestine digestion.

Pain killers have their problems.

Morphine causes constipation which can be so severe as to require hospital treatment which is both unpleasant and embarrassing. Constant attention to bowel function is very important.

Occasional use of mild laxatives is better than waiting for the problem to require stronger ones.

Aspirin and aspirin related related pain killers, if taken too frequently, can cause stomach problems. Paracetamol is better but overdosing could destroy the liver.

I have found that the flu-like symptoms come in waves and can be very much reduced by taking a combination of paracetamol, codeine and caffeine taken with vitamin C. In Britain I have found Solpadene Plus is the most effective.

Chemotherapy is very destructive, it kills all growing tissue, hence the loss of growing hair. It kills the growing tissue of the cancer but unfortunately damages the body. The good thing is that the body recovers faster than the cancer so by the next session the body has recovered but a little of the cancer has not.

The greatest damage to the body is to bone marrow which produces blood cells and blood patelets. These have to be checked before every chemo session. If the blood cell and platelet count is too low the body's resistance to infection becomes dangerously low, a cold could be serious and flu' could be fatal, so the chemo must be delayed until a suitable blodd count level is attained.

To help the blood problem I take multivitamins, one a day, plus extra iron, for the white and red blood cells, vitamin B6, B12, to improve blood clotting caused by low platelet levels and vitamin E to help repair the damaged bone marrow.

I eat plenty of red meat, fish and liver, all of which contain high levels of protein and vitamin A.

Care must be taken not to overdose on some things, particularly iron and vitamin A.

Iron is mainly digested in the duodenum, the lining of which may become irritated.

The secondary symptoms mentioned at the start are caused by malabsorption of vitamin B12 in the small intestine. Severe lack of B12 may cause nerve damage, heart disease and dementia. This vitamin is not found in vegetables so a supplement is absolutely essential for vegetarians and vegans.

Smoking is definitely out and alcohol should be limited to during or after a meal, never on an empty stomach.

Pain killers have other side effects. Regular use of morphine based drugs cause headaches and both aspirin and parcetamaol cause thrombocytopenea, ie. a reduction in blood platelets, so we are in a catch 22 situation. Take care not to overdo the paracetamol.

The destruction of tissue by chemotherapy causes another problem. High levels of uric acid may be produced to carry away the dead tissue. This may cause uric acid crystals to form in the kidneys. These crystals are transparent to ordinary X rays. Drinking plenty of water can help flush it away otherwise kidney pain can be severe when the calculus eventualy moves out, as I have experienced.

I was not given any of this information by my doctor or my oncologist. It is all the result of study and my own observations. I asked if my blood cell and platelet levels could be improved with medication and I was told it could not. After several postponements of chemotherapy because blood cells and platelets were too low I started the vitamin treatment and within two weeks all blood counts were well within the range of normal. I had cracked it!

Things to look out for are diarrhoea lasting for more than one day, a rash of spots or small boils, swelling of feet, the usual signs if diabetes such as excessive thirst. With any of these inform your doctor at once.

Above all else the attitude of mind has the greatest effect. Recently I met a man who's partner just gave up as soon as she had the confirmation of pancreatic cancer. She died within a year, but I intend to live a lot longer than that.

Note: As with all patient biographies this is the personal opinion and experiences of an individual not Pancreatic Cancer UK and not proven medical fact. What works for one patient may not work for others. The benefits of extra vitamins are not proven and you should always let your medical team know that you are taking any supplements as they may interact adversely with any official treatment.