CancerGuide: Inspirational Patient Stories
After 38 years service and at 55 years of age, I retired from the British Gas Corporation in 1986. My wife and I spent the next 5 years in enjoyable active retirement, including caravanning in the UK and touring Europe and the Mediterranean. I qualified as an English Table Tennis Association Coach and the weekly 5 or 6 hours of competitive and strenuous table tennis kept me fairly fit. Life was good.
On 13th June 1991, I spoke to my Doctor about discomfort and swelling in my left testicle, mentioning my concern about the possibility of cancer. I had read that early treatment of cancer improved the chances of cure and although he did not believe there was a serious problem, he agreed to refer me to a specialist. I was concerned that I did not receive an early appointment and complained repeatedly until an appointment was eventually confirmed for 1st August, seven weeks later.
When my wife and I met the Urologist at the local Hospital, he confirmed the presence of a swelling and suggested an ultra sonic scan to check on this and the kidneys, although he did not consider the probability of kidney cancer to be very high. This scan was carried out on 13th August 1991 and on 15th August, a taxi delivered a recorded letter, that asked me to report to the Urologist that same afternoon at 3 pm! Anticipating the worst, we were advised that a growth had been discovered contained in the left kidney and that further tests would be necessary before any remedial action could be considered. On 5th September I was given a C.T., scan and subsequently advised by the Urologist that removal of the kidney was recommended. On 19th September, he successfully accomplished this in 1 hours and on 25th September advised me that the tumour had been identified as malignant. He also said that chest X-rays had raised some doubts about potential spread of cancer and that further tests would be arranged within the next 2 weeks. A bone scan was carried out on 7th November and the Urologist telephoned on 11th November to say the scan had not revealed any further problems. After a final consultation with him on 17th December I was told that an annual X-ray check and blood test would be all that would be required in the foreseeable future.
The annual check showed no problems for the next 4 years and only as the 5 year check approached did I begin to experience some pain in my right hip when taking exercise. I assumed that at 65 years of age, maybe a new hip joint was needed so did not worry unduly, resolving to mention the problem at my next check-up. This I did on 26th March 1996 and a bone scan was arranged for 15th April. On 30th April, the Urologist advised that a tumour in the right hip had been found and that he had arranged for me to see the Hospital's Orthopaedic surgeon on 3rd May. He in turn arranged for an X-ray guided biopsy on 7th May and on 17th May his Assistant advised me that the tumour had been confirmed as a renal clear cell carcinoma of the acetabulam.
Subsequently I was referred to the Hospital's Oncologist who advised early treatment. At this stage I asked for and was referred to a specialist who had experience with Interferon-A and Interleukin-2 treatment as my own and my nephew's research on the internet had fortunately identified case studies including that of Steve Dunn who had defeated kidney cancer using these drugs. I shall be grateful to Steve Dunn for as long as I live, since I subsequently discovered that at my age, the British National Health Service would have been very reluctant to suggest or approve these costly drugs, partly because of limited budgets and partly because of more pressing priorities for expenditure. I also discovered later that without the treatment I had asked for I would have been lucky to last 6 months! Fortunately I was covered by private medical insurance so could afford to help the National Health Service out with its cash shortage problems.
Aggressive cancer treatment supervised by the new specialist, began on 5th June 1996 with embolism of the blood supply to the tumour. This was followed by 4 days of radiation of the tumour ending on 21st June 1996. Immuno/chemotherapy was programmed to start on 15th July 1996.
The treatment was called the "Atzpodien Regime" and it consisted of 3 cycles each of 8 weeks duration largely self-administered at home excepting for the chemotherapy. The 1st and 4th weeks commenced with a single Interferon-A injection followed by twice daily injections of Interleukin-2. These injections were self administered subcutaneously and were the most difficult to endure, resulting in violent shivering and sickness some hours later. Some reduction in these side effects was achieved by taking regular doses of paracetamol and anti sickness tablets (metoproclamide). Unfortunately, the anti sickness tablets also promoted diarrhoea, so further tablets were taken for this and an uneasy balance was endured. The 2nd and 3rd weeks were easier consisting of smaller amounts of both Interferon-A and Interleukin-2. The easiest weeks were from the 5th to 8th when Interferon-A and 5-FU chemotherapy was received. At the end of each 8 week period progress was monitored and if response was favourable, permission given to continue a further 8 weeks of torment! Apart from the difficulty in finding skin areas free of previous injection damage, especially from Interleukin-2, [altogether 120 injections were given to the lower abdomen and outer thigh surfaces], my skin itched almost uncontrollably throughout the treatment.
I had been advised that what little information there was about the success of the Atzpodien regime indicated that about 45% of patients responded, about 15% could expect another five years, and maybe 2% were likely to achieve a lasting cure. In my case, shrinkage of the tumour occurred fairly quickly and after 16 weeks of treatment flecks of calcium were recorded indicating bone recuperation in the hip area. Since ending the total 24 weeks of therapy on 10th January 1997, a multiple biopsy has found no traces of tumour and so far there have been no indications of any further secondary cancers. I still use a wheelchair for any distance in excess of 100 yards but hope to regain the better use of my hip as time passes. If there is any recurrence of tumour in the hip, I still have the option of surgical removal and rebuild action, but hopefully I may be on the mend. During the treatment I lost some hair and 3 stones (42 lb.) in weight now fully regained. My short-term memory, never good, has been made worse.
I suppose that everyone must have some fear of "incurable" diseases but in my case after initial shock, experienced twice in five years; I was able to accept relatively cheerfully that since there was no other option, I might as well make the best of the time I had left. I reasoned that I had enjoyed a full and happy life with no regrets and that there were many people who were much worse off than I was. In any event the fight for survival and the toxic drugs I received took most of my attention. Throughout the treatment I took daily multi-vitamin, mineral and 1 gm vitamin C tablets on the grounds that they might help to compensate for reduced food intake and were in any case, unlikely to do any harm.
I owe my recovery to-date to my wife who looked after me so well, to an essential sense of humour without which I could not have survived, to my relatives and friends who encouraged me to continue the fight, not least of all to my cancer specialist and perhaps most of all to Steve Dunn, via the Internet, for pointing the way to both the best medicine and to the need to persist against all odds.
Update - November, 1998
It is now over seven years since I had my left kidney removed and over two and a half years since a subsequent secondary cancer was discovered in my right hip. It therefore gives me much pleasure to report that I am still here and very much enjoying life! It is unlikely that I would be reporting anything at all however, if it had not been for Steve Dunn’s work on the ‘Internet’ and if I had not been determined enough to seek (and fortunate enough to find) an oncologist who could give me similar immuno-therapy drugs, under the Atzpodien regime. This update is therefore intended to draw attention to the fact that the regime has been a success story for me, so far, and to give a few of my thoughts on the treatment and its availability in the UK, in the hope that others may benefit from my experience.
It would seem to me, that the Atzpodien regime is still considered an experimental treatment by many medical practitioners in the British National Health Service (NHS), who do not generally commend it to patients who have secondary cancers, following a primary kidney cancer. My opinion is based upon reports I have received from others with renal clear cell carcinoma, in the UK, who have contacted me via the Internet, for advice.
It also seems to me that there are a number of other factors that may militate against the wider use of the regime. The first of these factors is the low probability of a successful outcome, the second is the heavy expense of the drugs and the third is that the treatment is self administered and so debilitating that some people do not continue it to completion.
Regarding the statistics pointing to a low five year survival rate following treatment, I do not know what sort of sample was involved or how the survival rates would be for that part of the sample who had a positive attitude and who sought early treatment. I suspect they might be better than average however.
As to the expense of the drugs, my insurance company advised me that they had spent £21,000 (approx., 32,000 dollars) on my treatment. The understandable problem faced by the British NHS is that they have a finite budget to work within and they have to target their finance in the direction most likely to yield the most benefit to the most people. Clearly, older people are a lower priority than younger people since oldies have fewer years left to enjoy any benefit! (I was 65 years old)! I feel however that if the only alternative to immuno-therapy is death, then immuno-therapy, whether experimental or not, should be given a higher priority than some of the other less life threatening illnesses treated by the NHS.
The waste of resources where a significant number of people cannot complete the course of treatment remains a final consideration, against the Atzpodien regime.
At the end of the day, I believe that it is important to learn as much as possible about whatever medical condition affects you and the potential treatments that are available. I commend the Internet to all seeking to fight life-threatening illnesses. I also believe that a positive attitude and the will to fight against all odds are significant survival characteristics.
As for now, it really is great to be alive. The side effects of the aggressive treatment I received in 1996 have almost all gone. Signs of skin damage still remain where some of the total one hundred and twenty sub-cutaneous self-injections were inadvertently put in the same place. Until thinking about it, I had almost forgotten how my skin objected to this treatment and how at the time, it itched and flaked off my legs and feet in sizeable pieces.
It was stated that if I managed to stay the course, I would eventually experience an increase in weight and I am now fourteen pounds heavier than before. It may be that my inability to exercise as vigorously, as I once did, is partly responsible for the weight gain, since I still need to use a wheel chair for any distance in excess of a hundred yards. My memory recall system was never good but now it is worse. I have also developed a minor acne condition on my brow and my eyes still suffer, admittedly to a much lesser extent, from the sort of matter discharge that occurred during the treatment. I am now 68 years old however so this deterioration may be due to natural causes but in any event, what a small price to pay for life! I can still drive a car without trouble and in 1998, my wife and I enjoyed four holiday trips to France. So life is good again and because of the experience we have faced together, I think that we appreciate, more than most people, each day that dawns.
Update November, 2000
It is now over nine years since I had my left kidney removed and over four years since a spread of renal clear cell cancer to my right hip joint was discovered and cured after IL2 treatment.
This past year has however been very difficult following diagnosis (on Xmas Eve, 1999 ) of a further metastasis in the pleura of my left chest wall. I have been literally out of touch with reality for much of the year since and am only now beginning to feel human again!
Briefly, I received a "keyhole" operation in January, 2000 to carry out a camera guided biopsy followed by talcum powder to irritate and seal the cavity surrounding the left lung, in order to stop significant fluid production and lung collapse.
This operation turned out to be more physically debilitating than I expected, even to this very day! I then received Interferon A for six weeks, being too weak for Interleukin-2.
Because of my faith in IL-2 I eventually managed to persuade my excellent oncologist, Dr Roberts of the Northern Centre for Cancer Treatment, to give me an eight-week cycle of the dreaded Atzpodien during the year. Perhaps because my physical condition was not good, the disease was not significantly arrested however.
I am currently taking Madroxyprogesterone Acetate (Provira) and Dexamethasone (a Steroid), and they are restoring my humanity and strength. They maybe only palliatives but they have brought enjoyment in good food and wine back again and life is good once more! (I am now 70 years young.)
Regarding my experience with the British National Health Service ( NHS ), it becomes increasingly clear to me that it is reluctant to spend money upon "expensive" cancer treatments, especially for elderly patients. Regarding the Atzpodien treatment however although it is unlikely to be mentioned or offered to NHS patients I believe that the NHS might find it difficult to refuse if asked outright for the treatment on the following grounds:
How lucky I was to have private medical insurance, which took the hassle out of paying for, an approved regime of treatment with a proven record of cure.
I should not denigrate the British Health Service too much however since I cannot speak too highly of my local general practitioner who referred me so promptly to Dr Roberts when the Pleura metastasis occurred. My wife and I also receive free influenza and Pneumonia jabs and other clinical services for pensioners that I imagine would be chargeable in other countries. We also get medicines that are usually free of charge to pensioners, so there is a valuable plus side to our British system, with all its faults!
I am also hoping to qualify for the Goettingen Vaccine trials since this seems a promising life saver so far as I am concerned but time will tell after all I am still here!
Sad News -- January 2001
I write with great sadness to let you know that my darling Dad Clifford died on Thursday 18th January 2001 from extensive renal clear cell carcinoma metastases. He wanted me to makes sure you were informed, and to once again thank you for your wonderful help and support throughout his long battle against his illness.
Thanks to you, he was able to gain several more happy years of life by seeking and gaining successful immunotherapy treatment here in the UK, and he maintained his remission until only a year ago.
Not long before Xmas 1999, he was re-diagnosed with new lung pleura metastases, for which he had surgery to resolve a pleural effusion, followed by steroid treatment because he felt so poorly. He and I both knew of course that steroid treatment is contrary to both immunotherapy and also suppresses the natural immune system, but he continued to fight his disease with good spirit and good humour throughout 2000, including some limited immunotherapy again.
He had great plans to fly to Germany for the new vaccine treatment, but by Christmas 2000 it was obvious this was no longer a physical possibility since further scans identified extensive spread of the disease throughout all of one lung, his liver and the adrenal gland of his one remaining kidney, and, his lung function was so diminished he was on continuous Oxygen.
He stayed at home until just after Xmas, ably nursed by my Mother, but becoming increasingly poorly, weary and disabled, finally being admitted to hospital in early January 2001. He then transferred (by his own choice) to a hospice on 18th January, slipping into morphine induced oblivion that evening and passing away peacefully the same night.
He fought his disease with a courage and tenacity over 9 years that astonished all who knew him, and retained his marvelous good humour, thought for others and positive outlook on life almost to the very end.
Thank you so much for those extra years we had with him. He was a very special person in our lives and we all grieve for him terribly now he is gone.
This CancerGuide Page By C.J Sanderson. © C.J Sanderson
Last Updated: Jan 26, 2001