Trace, more detailed version of his story
This case study traces the story of an apparently fit 60-year-old who was diagnosed with an inoperable tumour that was wrapped around the nearby portal vein. The tumour was down-staged (downsized) using experimental chemo-radiotherapy. It then became operable and was removed. Subsequently, the therapy was suspected to be the cause of a blockage in the bile duct and this was removed by further surgery.
The bottom line is to stay positive, and never give up hope. Hope does overcome all fear and helps us to fight and attack back!
This case study is dedicated to my wife, Joy Allen without whose unstinting care, advice, support and attention I would have found survival much more difficult.
- Operation 1-Bilary and Gastric bypass
- Tumor downsizing
- Diabetes Control
- Chemotherapy and Chemo-Radiotherapy
- Being Positive
- Nutritional Supplements
- Operation 2-Whipples
- Back to Sport
- Operation 3-Regision of Bilary anastamosis
- Post Op follow-up
I have been physically fit all my life; County Cross-Country runner, football, athletics. I've run more than 100 half marathons including 21 Great North Runs, London Marathons and International Triathlons. I have for a number of years followed a low GI diet with a moderate intake of alcohol. I am a non-smoker though I have to admit I have never bothered much about avoiding smoky environments.
I think the point is that this disease does not seem to respect the fitness of its victims - though the fitter you are the more able are you to withstand the treatment regimes including surgery, therapies, drugs and procedures. If ever there was a good reason to get and stay fit, this is it!
I came back from being a spectator at the Athens Olympics in 2004 and two weeks later escaped to the Grand Prix in Monza. I had severe stomach pains in Italy which I put down to an awful food experience on Alitalia. I tried to run it off though this didn't work.
At my Triathlon Club's local race the following week I did badly and had to walk. I felt below par, sluggish, generally ill though I couldn't put my finger on what was the problem. I started to get strong stomach pains and had to lie down to alleviate the pain, something that for me is unheard of. I decided to take a week off and go to Catalunya.
My stomach pains began to ease as my urine began to become gradually darker yellow by the day. I also had smelly diarrhea. I thought I was dehydrated and started to drink a lot more water. This had the effect of decreasing the intensity of color of my urine by day though by morning its color had darkened again.
I had intended to run in my 22nd Great North Run the following Sunday. I arrived back in the UK and my wife told me the whites of my eyes had gone yellow and that my suntan gained in Greece and Italy had visibly darkened. It was the calm before the storm!
As my GP was closed on Saturday I immediately consulted NHS Direct (08454647) who advised me to go straight to the nearest A&E as it sounded as if I had jaundice. I was kept in hospital overnight 'for observation' even though I had wanted to get on up to Newcastle-on-Tyne for the Run. I was put on a saline drip which was a frightening experience as it immediately branded me as 'ill'; I had a restless night though pain free. I actually felt like a fraud and decided that others needed the bed more than I.
I got myself discharged and became an outpatient. This might have been a mistake as the diagnostic process was delayed, outpatients seemingly get treated with lower priority. The tests and scans scheduled in fact were now delayed because I had become an outpatient!
First thing on the Monday morning I went to see my GP and we discussed the possible causes of the Jaundice as had been outlined by the A&E previously; Hepatitis- which would be ruled out by the blood tests already underway, Gallstones or another obstruction of the bile-duct-which would be detected by ultrasound, or something viral-the standby favorite of all ills.
I decided not to wait and had an Ultrasound done privately at the local Bupa Hospital. The Technician there was impressively thorough and told me within five minutes that he had found 'something' and he would be reporting to my GP that afternoon. Not knowing quite what to expect, however I didn't have long to wait as he rang the next morning. He told that I should await the results of the blood tests which were expected imminently though a 'mass' had been detected on the Pancreas by the Ultrasound the previous day.
I think in summary the symptoms were of the disease were essentially not apparent until the jaundice appeared to highlight that something was wrong. Only two weeks had passed since the stomach pains and a week since I went yellow.
I was very impressed by the speed the GP and the system worked as by the next day the blood test results showed Hepatitis to be absent though very high levels (345 micromoles/l-more than 30x normal) of bilirubin (bile) had been found in the blood together with high levels of liver enzymes.
This finding was consistent with a blocked bile duct (which runs from the liver to the gut) with the bile instead being discharged out through the kidneys into the urine and also being carried around the cells of the body by the blood. And the liver which produced the enzymes was working overtime to compensate!
The GP referred me to a specialist gastroenterologist at the local hospital for the following Tuesday. By then the GP had collected and collated all the blood tests and ultrasound results and had emailed them to the specialist.
The consultation didn't last long; there was a physical evaluation, I was weighed and told I was underweight (although the weight was pretty normal for me though maybe a few pounds down). I was suffering from Obstructive Jaundice caused by the mass on the Pancreas. I was ready for it when I was told I had Cancer of the Pancreas.
I didn't know whether to be devastated that my life might end soon or relieved that at least a cause had been found for the increasingly debilitating effect of the Jaundice which by now was causing significant discomfort through skin irritation and itching all over my body. This gradually became worse by the day and within a week I was a physical wreck being unable to sleep and constantly scratching all over my body.
I found this on reflection to be one of the lowest points of the process and my life to-date! I was also shocked and went into denial that such a diagnosis could be associated with me-such a fit bloke-a lifelong fitness seeker. It could not happen to me ….could it? It had!
Further tests were needed to learn more and determine treatment. I was to have an endoscopic procedure. In this, a tube with a small camera attached to the end was to be passed down my throat in a sedated state so that the bile duct could be examined. In addition, samples of the tumor could be taken and analyzed and a stent (small tube) could be put into the bile duct so that the bile could be drained away. This would relieve the symptoms of Jaundice.
For this endoscopic procedure I was referred to a specialist at the Middlesex Hospital (UCH) and in fact he was a part of a team from UCH that included a range of disciplines that would be treating me for some time to come and in fact still are to-date.
One week later the endoscopic procedure took place at the London Clinic, which was just over one month after returning from the Grand Prix at Monza! The procedure was successful; the stent was inserted although unfortunately the biopsy confirmed the nature of the tumor. During the UCH gastro-enterology team meeting the same week my case was discussed and on the Friday I was informed that a surgical route was indicated. An appointment to see the surgeon was arranged within a week.
This short hiatus allowed the wedding plans of my daughter to go ahead as scheduled. We threw a large wedding-party where the magnificent Bernie Marsden (he of Whitesnake fame) played for us. I thought this might be my last hoorah-though he told me in a quiet moment that I had to believe in Rock n' Roll and everything would be ok. He played me Honky Tonk Woman (Stones) and Wonderful Tonight (Eric Clapton) and I actually believed him!!
The day after the wedding I met the surgeon. And we discussed the prognosis and the plan to go ahead with a (pyloris preserving) pancreaticoduodectomy-the removal of the diseased head of the pancreas which contained the tumor, together with the gall bladder and duodenum and then reposition the bile duct and pancreatic duct into the reconstructed intestine (also known as a Whipples Operation).
On 6th November, about six weeks since I had gone yellow and 5 days before my 60th birthday I was admitted to the London Clinic ready for the operation the next day. The preliminary tests on admission revealed that I was also an undiagnosed diabetic though this did not really surprise me as the pancreas is responsible for the production of insulin-a lack of which is a critical feature of diabetes.
At that time I thought that the cause of the diabetes was due to a reduction in insulin production/efficiency caused by the tumor though I have subsequently learned that both the causes of the tumor growth and diabetes could be linked by another mechanism. (see www.pancreaticcancer.org.uk) .
5. Operation 1 - Biliary and gastric bypass
The operation was shorter than anticipated lasting about 3 hours rather than the expected 5-6 hours needed to remove the tumour. I spent the night in the patient care unit (PCU) and the next day I was told that the duodenum and gall bladder as well as a valve in the stomach had all been removed.
However the surgeon told me that the tumor was wrapped around the portal vein and therefore a resection at the head of the pancreas was not performed. It was deemed inoperable! This was not expected as the CT scan taken before the operation indicated that the tumour was clear of the vein. I therefore had the gall bladder removed and a bile duct and gastric bypass performed. Biopsies were taken from the pancreas although the biopsies before the operation had already confirmed the adenocarcenoma.
I think I was expected to be deflated by this news. I was not really dismayed. I was extremely relieved that the jaundice had gone and I knew that chemotherapy was to follow. I also strongly remembered the strength of mind and courage showed by 7 times Tour de France winner Lance Armstrong in his book ('It's not about the Bike').
Lance Armstrong's determination to not give up was to have a strong influence on me over the next few months.
6. Downsizing the tumour after Operation 1
I was happy to be told by my extremely positive surgeon that there may be cause for hope in the form of an experimental treatment they were trying to downstage (the technical term for 'shrink') the tumor so that it would become operable-basically the tumor would be shrunk in size so that it would no longer be wrapped round the portal vein and could then be removed. The treatment was to involve chemotherapy and chemo-radiotherapy.
It didn't take me long to be discharged from the clinic and within the next 10 days the insulin and saline drips were removed together with the catheter and drain tubes under my ribs (from the bile duct) and in my nose down my throat to the stomach (NG tube).
Analysis of blood samples taken daily post operation showed the levels of bilirubin (or bile-the material which is integral in the digestive process and which when discharged at high levels into the blood causes yellowness in Jaundice) and liver enzymes to be reducing gradually. By the time I was discharged the levels were not far off normal.
I also left hospital with a drain in the scar in my chest wound which was continuing to weep and needed new dressings (daily carried out by my GP surgery).
Although the frequency reduced as time went on, I had to have new dressings on the wound for the next 3 months! This was irritating as it prevented me returning to the swimming pool until the wound had healed although I was soon out on my bike.
7. Diabetes control
I was a diabetic (type two). I had probably been a diabetic for some time as I found out that many sufferers from the disease are found to be undiagnosed diabetics. I couldn't quite get my mind around the thought at first though I pretty soon got used to the idea.
The Diabetic Specialist (Endocrinologist) from UCH came to see me before the insulin drip was removed to explain the process and how it would work. I still had the pancreas and it was still producing the insulin needed to control the sugar (mainly glucose) content of the blood, derived from the digestion and metabolizing of food.
However its efficacy was reduced from normal and it was sluggish in getting going. Consequently I was to take an insulin enhancer-Gliclazide. This was in the form of 80mg tablets taken orally twice a day; in the morning before breakfast and in the evening with dinner. I was told that through the effect of the enhancement or catalysis, the action of the insulin would be made more effective. Although I was to take two tablets daily, I could increase the dosage if needed to up to four tablets which I was told might be needed in future (-and in October 2006 this level was actually required).
I was taught how to take small blood samples to enable an electronic reading of Blood Sugar Level (BSL) via a small hand held instrument.
Initially I took samples several times a day upon waking and then two hours after eating all meals. It was recommended that I should follow a GI diet which entailed eating foods of low Glycemic Index (GI) where the food had a slow release of glucose into the blood (See Diet in Section 17).
I have experimented extensively with different food types and have identified those foods which I can eat comfortably and in sufficient volume to maintain or with luck increase my weight slowly while keeping BSL below 10 and hopefully between 4 to 8 (mmoles/l). I have found an hours' normal exercise uses up about 1 unit of BSL.
8. Chemotherapy and Chemo-Radiotherapy
The histology (biological analysis) reports on the tissues from the tumor had confirmed that it was malignant and the CT scans (X-Ray scans in slices across the body) taken before and after the surgery showed the mass on the pancreas (the tumor) to have a diameter of the order of 5 cm or about the size of a tennis ball.
The Oncologist from UCH came to see me while I was still in the hospital to explain to me the features of the treatment he was recommending. I was very relieved to learn that the Oncologist, the Surgeon, the Diabetes Specialist and the specialist Gastroenterologist were all part of the same team. They meet weekly to review common cases-I found this process extremely reassuring.
Additionally, my level of general fitness even after the surgery was sufficiently high that the therapy was to begin almost immediately. And within about a week of the surgery the Chemotherapy began.
The aim of the treatment process was to shrink or downstage the tumor off the vein to make it operable. I was to have two Chemotherapy treatment cycles of 3 weeks per cycle followed by one week off for recovery (or good behavior as my wife joked!) purposes.
The Chemotherapy was to consist of Gem/Cap which in translation was Gemcitabine (weekly by liquid infusion) and Capecitabine (daily in tablet form, 2 times daily at a dosage dependent on body weight).
Gem/Cap combination had been shown in qualitative trials to have increased effectiveness vs other therapies and a large national trial (sponsored by Cancer Research UK to which I am very much indebted) was in progress to assess the effect and in particular any side effects on a more quantitative basis and in the hands of a larger number of Oncologists/patients (seehttp://clinicaltrials.gov/ct/show/NCT00032175?order=20).
Each week there were blood tests to ensure satisfactory levels mainly of hemoglobin, though also white cell count, neutrophils, blood platelets, liver enzymes and bilirubin.
Over the 8 week period of the Chemotherapy the levels gradually fell, though not to a level considered to be dangerous and to therefore stop the infusion process. In addition anti-sickness medicine was delivered with the infusion and I was prescribed Imodium in case of diarrhea (which was needed!)
There was then a 2-3 week period of 'settling' after which an analysis of what had been achieved was carried out. A CT scan was conducted which showed the tumor had reduced in size to 60% of its original!
8.2 Side-effects of the Chemotherapy
There were some minor side effects of general debility which built up over the 8 week period. By the end of the two cycles the skin at the bottom of my feet was cracking particularly on the heel. There was surprisingly little other negative effect, I thought. I went to see the oncologist at the start of the first cycle and after the end of the 2nd cycle.
On each occasion he had a good look at me and he told me that if I looked ok I probably was
9. Being Positive, keeping motivated
Given the inoperability of the tumour, I had a great feeling of elation each time I had the Capecitabine which was three times daily. At last, I thought I am fighting back.
I decided to tell as many people as I could and in effect I received a massive level of support and encouragement. I am greatly indebted to my friends from the Garden City Runners club and Tri-Force Triathlon club for encouraging me to set some new and challenging sporting goals and for recommending me to get help support and information from this site (www.pancreaticcancer.org.uk) and to Les Niewiara for his words and for putting his highly supportive case study on the website.
9.1 The Albert Einstein effect.
I woke up each day thinking 'right, here's another day when it's going to get zapped' Every day I opened the window and shouted out 'It's another miracle. It's another day' something I had read Einstein used to do. In fact I developed a number of phrases to shout out including;
- -You are not going to get me (and other unprintable words!)
- -You are not going to win
- -You are going to get zapped you critter
- -Get out, get out you thing
- -I'll be seeing you out very soon so get ready
- -How dare you invade me, you're going you b*****d
- -You don't belong in me and you're leaving soon you f***er
- -etc etc
and like phrases.
9.2 The Armstrong effect
I thank Lance Armstrong for this inspiration. He decided to be determined and so did I! I think anger is a good therapy and I felt both angry and elated in good measure.
9.3 The Placebo effect
I am now a strong believer in the Placebo effect.
One day I was listening to the radio about some trials in Africa by a UK pharmaceutical company. Its spokesman said that 'a particular type of disease they were working on was being destroyed amongst 73% of the Population taking the drug. And 40% were cured in the placebo group who didn't take the drug!'
I was absolutely amazed that almost half the population was cured because it believed that something was happening to them. I became an instant believer! The more you believe the better off you are!
9.4 The Goal effect.
Two of my friends who came to see me during this period had suggested I should get back to Triathlon as soon as possible. It's great because if you can't get out running you can always get to the swimming pool and if that's closed well you can get out on your bike. I decided that I would set a goal of completing a Triathlon during the season and a cross country run before the winter was over. And in fact I did both however slow.
It's actually amazing how many of my pals have marvelous stories to tell about how they have coped with similar situations to mine. You just have to talk about it. People should be encouraged to talk more about their experiences. Passing on these stories is very therapeutic-or so it seems.
This treatment is relatively common as I understand it in the US and many other European countries though I believe is not so common in England and for Pancreatic Cancer work (www.ncrn.org.uk). In my case the therapy was designed to be used to help shrink the tumor (down-staging) further such that it could later be surgically removed. In principle, the therapy consists of radiation treatment while taking chemo drugs.
I am indebted to Bupa for funding of this and other treatments related in this Case study.
The Radiotherapy (which is irradiation of the diseased area using radioactivity and NOT radio waves as I had thought!) was to be conducted at Mount Vernon by specialists in the Marie Curie Research Unit (to whom I should like to express my gratitude).
CT scans were taken of the area to be irradiated which included the head of the pancreas where the tumor was located, and the surrounding area. It was explained to me that this was to ensure that any 'shards' of the disease that might be distributed in the surrounding area by the tumor might also be caught in the 'footprint' of the radiation.
In order to avoid radiation damage to the surrounding organs (liver, kidneys, stomach) in the vicinity, the radiation dosage would be divided into three parts and administered by a 'gun' mounted in a massive cylinder and fired from three directions (thereby reducing the dosage to the area surrounding by about one third without reduction of the dosage aimed at the tumor).
The accuracy of the work of the Radiologists was truly incredible. Having identified the target direction from the CT scans, measurements were taken to ensure that at each radiation session the internal organ to be targeted was in exactly the same place relative to the 'gun'. Fluorescent dots were marked on my stomach to guide laser facilitation for this amazing feat of positioning.
I was to have 28 days of irradiation treatment. This was spread over a period of about 6 weeks. It meant daily treatment except for the weekend so that the body (and the Radiologists) could recover somewhat. On the third day of each week I was to have an infusion of Gemcitabine fluid (at 25% of the previous dosage). It was explained to me that this would enhance the radiation effectiveness as the drug would migrate to the diseased area and act as a 'target' for the irradiation dosage. The radiation dosage was a consistent level throughout and lasted for less than one minute although the body positioning exercise lasted up to about 15-20 minutes or so.
Again there was a general build up of the feeling of debilitation over the period of the treatment. I began to lose all sense of taste and many of the foods that I had been enjoying became difficult for me to face. I became tired easily and seem to spend more time resting and generally feeling unwell particularly towards the end of the treatment. However, I was able to withstand the treatment pretty well and the generally positive and sunny attitude of the Marie Curie Staff and Radiographers was a real tonic, to me and to the other patients.
At the beginning of each week, I had a blood test to ensure my immune system was coping satisfactorily. In fact the key levels (of white and red blood cell count, hemoglobin, platelet. neutrophils, lymphocytes) were affected throughout the period although they never went so low /high as to cause the treatment to be modified or reduced. In addition, the liver enzyme levels seemed to fluctuate, though the treatment was allowed to continue to its conclusion I am pleased to report.
And again throughout the treatment process I had this great feeling of elation that the 'invader' was being zapped! Additionally, throughout the process anti-sickness drugs were added to the Gemcitabine infusion and I took further similar drugs prior to each radiation dose. Initially these included a steroid, dexamethazone though sleepless nights followed. Consequently, I asked for these to be omitted and I just about managed to get through the treatment without them. By the end I have to admit that I had had enough!
11. Results of Chemo-Radiotherapy
The only other reaction was the feeling that my stomach was 'churning over' and this turned out to be the forerunner of diarrhea and this was solved very well with Immodium.
At the beginning of the treatment process the tumor, according to the CT scans was about 5 cm in diameter and after the two cycles of the Chemo alone this had reduced by about 60% much to the elation of the Oncologist (from UCH). At the conclusion of the combined Chemo and Radiation treatment, CT scans showed the tumor had been 'flattened' which I took to mean that it was no longer detectable as a 'lump'.
A post Chemo-Radio PET-CT Scan was also conducted at Mount Vernon to provide further data on the state of the tumor and of the disease (although my surgeon while having confidence in the CT scan results was less sure of the value of the PET-CT scan for this illness). Me. I was over the moon with delight-to use a football parlance!
In the early stages of the two Chemo cycles I was continuing to visit my local GP Surgery to have my Surgery wound redressed. This continued into the Chemo-Radiation process as the wound did not interfere with the irradiation. However by end February, some 3 months from the first surgery, the wound had healed over. I started to do daily stints on my exercise bike as soon as I could in January and by early February I was running again, albeit rather tentatively, in Cross Country runs.
I mad e my come-back (one of many as it happens) in a Cross-Country race at the local Sunday League event at Royston in March and I am pleased to report that I finished the event (though I admit I was ready to drop out after 3 out of the 5 miles) and I was not last!
12. Nutritional Supplements
I am a believer in the positive effects of taking nutritional additives which may be another placebo effect (see Section 9.3 above). However, some press articles have stated that by and large adding these to the diet do not have any/much value.
On my return home in November 2004 after my first Operation, I returned to my practice of taking Vitamin C (1000mg)-now taken daily instead of occasionally-and a multi-vitamin tablet including Vitamin D also daily. I later added both Folic Acid, Selenium and Coenzyme Q10/Vitamin E tablets daily as further desk research I did suggested that these anti-oxidants were beneficial agents against tumors.
I also researched so-called power foods to find other strongly anti-oxidant effect. On this basis I have increased my intake of berry fruits (eg blackberries, blueberries) as well as almonds, brazil and walnuts, un-skinned peanuts and grapefruit.
I also started taking Omega-3 fatty Acid capsules when I read that the Chemotherapy may be enhanced by this agent (though there have been subsequent trials on the subject, the results of which may now have been published). This agent is also recommended by dieticians in the context of diabetes (Diabetes UK).
Recent early research indicates that Vitamin D may impact positively the incidence of the disease and I have subsequently moved on to a multivitamin tablet containing nominally 400 IU.
13. Operation-2 Whipples Operation
There followed a period of rest and recuperation which lasted from the end of the Chemo-Radiotherapy in March through to May when I had the follow up surgery. During this five week period I went back to swimming twice a week, biking for about 90 minutes a week and running as often as I could muster. This later activity turned out to be the most taxing though feasible, just.
My surgeon and Oncologist told me that I had the best chance of surviving and recovering quickly if my heart was in the best possible shape. Two weeks before the surgery date, I completed a sprint triathlon and though it wasn't too quick I finished in 2nd position in my age group (old men!) and came home with a plaque to prove it!
This was the fulfilling of my goal to complete a Triathlon as soon as I could after the Operation 1.
I was readmitted to the London Clinic on 20th May 2005 ready for the Operation to remove the tumor on the next day. I was very excited at the thought of the zapping process over the past 6 months and the forthcoming surgery to remove whatever maybe left of the tumor. It was a little over 6 months since the first attempt to remove it and was to be conducted thankfully by the same team from UCH as the earlier operation though augmented by:
- -an additional surgeon because of the potential length of the operation and its increased complexity and protocol
- -several 'observers' keen to see a tumor downsized by Chemo-radiotherapy at first hand!
The operation lasting about 5 hours was a success. The remaining apparently dormant tumor was cut from the head of the pancreas and portal vein which required re-sectioning (also something of a rarity in such circumstances I am told). The remaining pancreas was sewn into the stomach where it would be more 'stable' and therefore the bile duct could remain in its repositioned place in the intestine.
Because of the potentially higher risk of internal bleeding than in the earlier surgery in Op 1, (potential damaged/scar tissue through the Chemo-radiotherapy) I spent two nights in the PCU. I was then moved back to my bed.
However, the wound drain protruding from my stomach wall showed the tell-tale signs of bleeding two days later. I was wheeled up for a CT scan in an attempt to identify the source of the 'leak'. This was believed to be in the area of the arteries to the pancreas. The next day an Xray procedure(angiogram) was performed via an insertion of a tube into the groin and the exact location of the bleeding was discovered. Then an intra-arterial stent (tiny wire mesh tube covered in plastic) was fired to block up the leakage!
I found this whole experience something of a minor miracle. Einstein was found to be correct yet again!
This Procedure was conducted under local anesthetic (which felt like no anesthetic) and so I was able to watch progress on the monitor. I was also able to witness the amazing 'glee' amongst the team performing the procedure when the leak was located and then plugged. I was pretty happy myself and the fact that I felt as though a coat hanger had been wrapped inside my stomach was of no consequence!
I was then removed to PCU (patient care unit) for a further 5 days to ensure no further issues with bleeding. Additionally, my surgeon had prescribed liquid octorol to curb any potential bleeding. As this is usually administered in tablet form, observation in the PCU was required. By now I was without food for 5 days and on the first day back to PCU a Hickman line (a rather wide diameter tube) was put into my neck so that I could take a 'food' drip intravenously (TPN).
I remained in the Clinic for a further week when I was visited by the Diabetes Specialist and Oncologist from UCH. The TPN, saline drip and insulin line were all removed together with the drain tubes, catheter, the NG tube and clips used to keep the wound together. I realized that I had been in hospital for almost one month!
This time the histology reports on the liver tissue, the tumor and the surrounding areas showed the disease to be absent. I was totally elated of course
I am indebted to Bupa for the funding of these Procedures,
14. More Chemo
I was to complete the protocol of Chemo therapy started after the first Operation in December 2004, six months previously. The same chemotherapy ingredients Gem/Cap were used in similar treatment cycles, though this time it was to be 4 cycles over 4 months. It was explained to me that this further chemotherapy was designed to mop up any malignant cells and even molecules to help prevent a recurrence of the disease and at the same time complete the 'trial' protocols.
This chemotherapy treatment began almost immediately, two weeks later in late June and was all over by mid October. I experienced similar side effects as in the previous cycles. The most significant effect was the damage caused to the skin on the bottom of my feet.
15. And back to Sport
Although I became gradually more debilitated as the Chemo treatment continued, I decided I had to get back to the pool and onto my exercise bike. So by the end of the 2nd cycle in August I was also running for about 30 minutes once or twice a week and swimming for about one hour per week at the University of Herts pool in Hatfield.
The final infusion of Gencitabine took place in October 2005 and the following weekend I ran although tentatively in my first serious Cross Country race at Cheshunt (5 miles) for more than a year and the following weekend I began doing turbo-training on my bike with my local Triathlon Club, Tri-Force.
With the CT scans and blood test results showing I was clear of the disease I began to increase my running activities. I forced myself out into the cold autumnal air on my bike and continued my weekly visit to the pool. On 2nd January 2006, 6 months after the 2nd Op and 2 months after completing the Chemotherapy, I rejoined my Triathlon club team mates at TriForce for a full two weeks training! Traditionally, I had always run the Buntingford 10 mile run in December with the Garden City Runners between Xmas and the New Year and although quite slow I was absolutely delighted to finish and in one piece!
Bile Duct Blockage
I decided my dear wife needed a break and a holiday so I broke the bank and took her away for two weeks to the Caribbean at the end of January 2006. I felt very well and seemed to have got my appetite back at last.
I had arranged to have a follow up CT scan and blood test the week I got back as the three month follow up was already due. I admit I was amazed my weight had actually gone down following the holiday though the CT scan showed I was clear of the disease. I was relieved. It was one of the best days I could ever remember since Aston Villa won the European Cup in Rotterdam in 1982!
However the blood test results indicated that the liver enzymes were in some cases 2 orders of magnitude higher than normal.
Apparently, there are a number of causes of such high levels of liver enzymes including the impact of the Chemotherapy. In this case the most likely cause was deemed to be a partial blockage of the bile duct particularly as the bile levels were almost normal.
An MRI scan confirmed a narrowing of the bile duct and so the following week a tube was inserted under mild sedation in my chest, through the liver and into the bile duct. Real time x-ray guided a wire in the tube to the restricted spot though no way through was found. A second attempt under general anesthetic two days later and a final attempt using endoscopy also failed the following week.
The bile duct by now was probably completely closed and the tube that had been inserted in my chest became a bile drain tube for the next two weeks as I awaited my next round of surgery to unblock the duct! I was actually surprised at the volume of liquid (sometimes more than 1 litre per day) that passed out of the drain and had previously passed down the Bile Duct and into the intestine. It is not surprising that we are urged to drink 2-3 litres of water a day when about 1 litre is passing as bile and another litre is passing as urine.
16. Operation 3-Revision of biliary anastamosis.
The remaining option to remove the restriction in the Bile Duct, for the 2nd time in my life was surgery. The cause of the blockage had been ascribed to excessive build up of scar tissue caused by surgery (Operation 1) in combination with the Chemo-Radiotherapy treatment conducted by now 12 months previously. This treatment is well known as an effective means of degrading internal tissue (and if needed the use of chemo-radiotherapy can be used to produce blockage!).
In this case the previous treatments were presumed to have caused the bile duct to narrow and effectively close in the areas where blood supplies to the duct become progressively reduced.
The Surgical Operation was to be conducted by my now well known team from UCH of two surgeons and an anesthetist. This seemed like good sense to me as they would certainly know the entrance and their way round by now! On April 1st 2006, and not a date I would have chosen myself, I was readmitted to The London Clinic where I reacquainted myself with a number of their excellent nursing and auxiliary people.
I opted again for an epidural for post operative pain control as after the previous surgery as it had proved effective (although I have to admit that I thought that an epidural was used in child birth as a substitute for anesthetics).
The procedure went well and lasted for around 3 hours. Entry was gained via the previous incision just below my chest, the stomach moved to one side and the bile duct exposed. The damaged material was cut away and the bile duct rejoined with suture. The duct ended up slightly wider than previously as the joint was positioned in a wider part of the tube.
A wound drain exited my right side below the liver region and the existing bile duct drain continued to exit my chest as before. In addition I had the usual saline drip, a drip to carry antibiotics and liquid paracetamol, a catheter and the usual NG tube in case of a need to drain the stomach subsequently, though thankfully not!
I spent two uneventful days in the Patient Care Unit (PCU). My normal low pulse rate (35-50bpm) caused the usual consternation though I was somewhat concerned un-necessarily by the relatively low blood pressure (85/50). Mindful of the difficulties encountered in Op 2, the wound drain was removed before I left PCU and the only other issue was low potassium and magnesium levels. Blood Glucose level was controlled this time by my Gliclazide tablets as this had become the norm for me.
I was moved back to my bed and the usual routine of frequent injections of various medicines, tablets, blood pressure, blood sugar and daily blood analyses resumed. These all returned to around the normal levels including the liver function values-indicating the bile duct was working as normal- although the GGT level remained slightly above normal (and I don't think it has dropped to the normal level to date),
On the following day the Catheter and NG tube were removed, thank goodness and I returned to water and soup and got out of bed. So far I had resisted all attempts to get up until I felt the going clear again-given the previous difficult experiences!
On the 6th day with all the additional drips removed and by now on solid food and able to walk up and down the statutary 6 flights of stairs I was discharged with the bile duct drain tube still protruding from my chest!
17. Post Op follow-up
Two weeks later in late April 2006 I returned to have a further CT scan (again on the identical machine as used through out the entire treatment period). This confirmed that the bile duct, although maybe not perfect was working sufficiently well for the drain to be removed-for which I was greatly relieved as by now the tube had been protruding from my chest for 6 weeks or more, was painful and the area around the tube exit had become damaged and somewhat septic (and for the removal of the tube I needed a low level of antibiotic-Ciproflaxacin).
I was to have monthly blood tests for the foreseeable future to monitor the Liver Function Values (LFV) as these will increase in level if there are further closures of the bile duct. Additionally I am to have 3 to 4 monthly CT scans as a confirmatory monitor.
I have tried very hard with the great help and support of my wife to follow a low GI diet (see The GI Diet by Rick Gallup-Virgin books) and have found Healthy Eating for Diabetics by Antony Worrall Thompson-himself a diabetic sufferer-to be particularly helpful. Generally speaking, I have kept away from processed food wherever possible and used carbohydrate, chicken for protein, fresh vegetables and fruit as my staples.
In addition I have found Audrey Eyton's F2 diet which also incorporates low GI (F2's aim is to reduce so-called bad bacteria) is a very good guide. Consequently, I have kept clear of large quantities of animal protein and red and processed meat and eaten less fried foods, and gone easy on cheese and saturated fats. I have kept my alcohol intake down though not abstemiously. See also Guide to Natural HealthCare by Natures Best/Readers Digest andhttp://www.naturesbest.co.uk
By following these sorts of diet I have been able to keep the BSL generally down below 8 which clearly help control the diabetes. As there may be a link between the pancreatic disease and diabetes, and tumors are known to enjoy sugars I think dietary control is mandatory.
See also www.runsweet.com which is a website about sport for diabetics.
I have been working on the approximate consumption during sporting activities of 60g per hour of carbohydrate and have been able to top up sugar levels where needed as exercise brings them down by using SIS products which contain complex carbohydrate from corn starch derivatives (Go bars and gels)-see also www.scienceinsport.com
- September 2004-Symptoms of Jaundice
- October 2004-Pancreatic Cancer diagnosed after ultrasonic analysis
- October 2004-Stent inserted with endoscopy to mitigate Jaundice
- November 2004-Bi-pass surgery removing causes of Jaundice. Tumor inoperable
- November 2004-Diagnosed as diabetic (type 2)
- November 2004-Chemotherapy begins-two Gem/Cap cycles
- January 2005-Chemotharapy ends. Reduction of tumor to 60% (CT scan)
- March 2005-Chemo-Radiotherapy begins-28 days' treatment
- April 2005-Tumor flattened (CT scan)
- April 2005-Triathlon event
- May 2005-Surgery to remove tumor and resection portal vein
- June 2005-Chemotherapy begins-four Gem/Cap cycles
- October 2005-Chemotherapy ends.
- November 2005- Three-monthly blood tests begin
- February 2006-Blood tests show raised levels of Liver enzymes.
- February 2006-CT and MRI Scans. Blocked bile duct diagnosed
- March 2006-Blocked bile duct remains even after endoscopic-assisted attempts to unblock
- April 2006-Surgery to reopen and resection Bile duct
- June 2006-Race against Surgeon in London 10k
- August 2005-Return to Triathlon at Thames Turbo event
- October 2006-Completed 22nd Great North Run
- July 2007 - achieved ambition of qualifying for the GB age group team for the triathlon World Championships in Hamburg from August 30th to September 2nd.
- July-August 2008 - cycled from Hammersmith Hospital, London to Krakow, Poland to raise funds for Pancreatic Cancer UK as part of the Bike to the Future 2008 team.
- September 2008 - took part in the World Triathlon Championship in Vancouver.
- May 2009 - took part in his first Half IronMan in Maresme, Barcelona and came 2nd in his age group
- throughout - many, many triathlons and other events including Reading Half Marathon 2008 and 2009 and the Great North Run.
This is purely the personal experience of a patient and should not be relied on as a medical opinion and expert advice should be sought.
Please discuss with your medical team and dietician before you make any changes to your diet or take supplements.
Chemoradiotherapy is common in the USA as a treatment but not in a neoadjuvant setting as here ie to shrink the tumour. revision (means redo), anastamosis means joining tubes.