Case: 2006. Lady, 86 years old. Widow (2004). Non-smoker (active or passive). Alcohol: only occasionally (glass of wine, beer). Medical History: 1984 (car crash: ruptured diaphragm + pericardium + spleen (---> splenectomy), multiple hepatic lesions, fractured pelvis and ribs; laparotomy (wrong diagnosis of intestinal occlusion); 2003-2006: suspected TIAs + gait difficulties. Education: University (Licenciée et Agrégée en Sciences Politiques et Relations Inernationales (UCLouvain). Hobbies: sculpture, Taï Chi Chuan, learning Chinese. Major complaint: urinary urgency/frequency and consequent chronic lack of sleep. Very tired and loss of weight (but both were first noted when looking after her husband during the 18 months that preceded his death; this included climbing up and down steep staircases multiple times everyday). Gait difficulties. Occasionally, slight hematuria and/or cloudy urine; at other times, urine quite normal. [Note: peers consider that urinary frequency, hematuria and bacteruria should not necessarily be a cause for concern in the elderly.] Aetiology = ?
Hospital: Department of Urology, St. Jean Hospital, Brussels, Belgium.
1) Urinalysis: hematuria & bacteruria. Treatment: AB. Possible aetiology of infection: insufficient hydration, constipation or gynaecologic issues. First two possibilities most likely in this case. -
2) Recurrence of hematuria and bacteruria despite AB and persistence of urinary urgency/frequency ---> Ultrasound of urinary system. -
3) US = intraluminal vesical mass and kidney cyst detected. -
4) Direct (i.e. without previous cystoscopy) endoscopic
papillary carcinoma T2. -
5) Shock for patient and family. -
6) Aetiology of this cancer? Chronic "normal" urinary infection in the elderly...?... Other...?... -
7) Treatment decision after internal discussion between a "classical" interdisciplinary team: application of EBM (Evidence Based Medicine) ---> cystectomy or 6 week intensive
radiotherapy. [Immunotherapy and chemotherapy: considered as inappropriate for T2 Bladder Cancer]. Period. -
8) IMNRC’s main Medical Expression of Interest (EoI) is “The Physics of Life and the Nutri-Neuro-Immuno-Vasculo-Endocrino-Epigenetic (NNIVEE) System: a holistic integrated interdisciplinary understanding of diseases and healing potential in the human being explored using novel approaches to therapy.” We applied this principle. I rejected the classical treatment decision, questioned EBM, favoured our EoI approach and suggested to set up a Customised World Interdisciplinary Network (CWIN) for Bladder Cancer: CWIN 4-1. Urologist was open to discussion and novel/innovative ideas. The Extended Interdisciplinary Team now consisted of the patient, St. John's Hospital and the IMNRC = the first CWIN 4-1 Team. -
9) I contacted about 40 Departments of Urology throughout the world. We wondered: Who shall respond ? Who shall not respond? Who shall show concern regarding the fate of this elderly lady and contribute actively by suggesting their collaboration, novel solutions, unpublished work and/or immediate research perspectives? Who shall be the first to find THE solution? Are past reputations still deserved today? Who are the real experts in 2006? We waited for replies from the international scientific and medical community hoping to receive new innovative suggestions. In the meantime, the literature is screened for alternative treatments. Finally, we receive about five replies. A real disappointment. This only illustrates that ICT is not much use if the minds do not meet. Much must be done here. The few replies we did receive got us thinking however.
10) The CWIN 4-1 Team (in fact, I) has (have) an idea: find a way to get through to and penetrate the detrusor muscle with intravesical chemotherapy. - 11) In the meantime, patient is given AB +
12) i. Chemotherapy reconsidered: it is indeed technically possible to increase wall penetration of active principle. ii. Immunotherapy (BCG) reconsidered: BCG is able to penetrate deep within the detrusor muscle and has even been observed in pelvic lymph nodes after instillation, while chemotherapy is dependent on simple diffusion and penetrates to the depths of tumour extension poorly. -
13) Globe! ---> UKT (about two weeks) ---> Normal Bladder Function -
14) Pelvic/abd scan negative (no adenopathy). -
15) 6th November 2006: intravesical mass detected (about 2cm) by US. Diagnosis = Either Possible recurrence of tumour or inflammatory reaction -
16) 17nth November 2006: endoscopic TUR of localised mass (smaller than expected) + biopsy. Diagnosis: macroscopic = ? / microscopic (histopathology) = inflammatory and no evidence of tumour. But no absolute guarantee that tumour has been totally eradicated: what of the bladder wall? Rest of bladder macroscopically satisfactory (superficially). -
17) In the meantime, BCG
18) Paper on AGE (Aged Garlic Extract) discovered [see publications below] Oral AGE Immunotherapy considered. Urologist suggests a nutritionist. Nutritionist is consulted. Joins the initial CWIN 4-1 Team. -
19) Treatment Decision (after resection of invasive tumour): immunotherapy [AGE (10 days) ---> Maïtake (10days) ---> Nothing (10days)]/ month + continued E. P. + alternative medicine + adequate diet + Proto Pilot Scheme 2 (p-Ps 2)* Proto Pilot Scheme 2 (p-PS 2)* = innovative programme to improve the well being and quality of life of the elderly in institutions or at home through ballroom dancing, taï chi chuan, music, nutrition, cognitive training as well as encouraging highly varied intellectually/physically stimulating activities: Chinese Balls (hand/finger coordination), Chi Nei Tsang, Acupressure/Puncture, basic classical ballet elementary exercises, Chinese massage, sculpture, media, games, reading, walking upstairs and downstairs, ... This highlighted the importance of epigenetics -
20) Follow-up: cystoscopy / other...? -
21) Cystoscopy 8 February 2007: negative = no recurrence of tumour, superficially. Bladder has well healed from preceding surgical intervention. Still too early to decide whether patient is 100% cured, but the clinical outcome is definitely promising even though there is still some residual vesicular instability. Kidney US in two-three months. Perhaps another CT-Scan. -
22) Nutrition: extra Vitamins A, B6, C & E. Patient still continues treatment as in 19) above. -
23) Urinary System US 4 March 2007: negative (bladder) = no recurrence of tumour. Cyst (4cm) in kidney but so situated as not to cause any obvious kidney damage. Dimensions
of kidneys: ok. Clinically: irregular persistence of urge/stress incontinence and nocturnal enuresis. -
24) Concentrating on p-PS 2. Main concern now: gait difficulties, bradykinesia, suspected TIAs and rarely, complex hallucinations. - Results are spectacular. Complete recovery. The patient walks alone, smiles, reads books, resumes her sculpture, likes talking, goes out (accompanied), no more hallucinations,… She is happy. -
25) March - May: cancer treatment suspended. June - January: EP + AGE + Maitake resumed. p-PS 2 whenever possible, but far too irregular. (see below). -
26) Cystoscopy 3rd January 2008: negative = no recurrence of tumour. Irregular persistence of urge/stress incontinence and nocturnal enuresis.
27) Pelvic/abdominal CT Scan 11nth January 2008: negative = no recurrence of tumour. Patient is delighted and wants to fight on! -
28) p-PS 2 is abandoned. No support and complete isolation. Reason: politico-linguistic apartheid and ostracism. -
29) Examples of repeated incidents from 2008 till 2010: Alarming confusional state ---> Removed fecal impaction with an impressive amount of feces ---> patient recovers. Acute dysphagia (inability to initiate swallowing in these cases) ---> suspected brainstem TIA ---> three AGE ---> recovers completely. Bronchitis: AGE + thyme + plantain + lemon juice + cane sugar ---> recovers. Increased spells of complex hallucinations. Depression. Lewy Body Dementia. -
30) Cystoscopy 5 May 2010: negative = no recurrence of tumour! Slight inflammation was noted. From 2008 till 2010, the patient continued to receive AGE but irregularly. EP was discontinued. EP shall therefore be resumed.
We are very keen on publishing the results but realise that for these to be more credible, the protocol must be applied to many people. A cohort study is needed. The p-PS 2 was initially very difficult to complete in a short time each day because the patient got very tired: patent heart murmurs but no clear evidence of cardiac ischemia. The programme had to be applied progressively along the whole day. The overall results were however astonishing: the patient was again able to walk along the corridors, up and down the stairs by herself. She felt stronger and more confident. She wanted to live to 100! (We were thinking of switching to another CWIN since the p-PS 2 was not focussed exclusively on Bladder Cancer anymore.) Now the p-PS 2 including the general global supervision of the patient became an enormous task and took nearly all my professional time with no breaks. The French speaking patient lived in Tervuren (unilingual town in Flanders, that was however bilingual when she settled there in the 1950s), received no support whatsoever and was completely isolated (no cleaning lady, nobody to stay with her when alone in the big villa, no help to wash and other necessities, nobody to cook and do the shopping for her, continually harassed by the Flemish administration and public service, no financial aid, no hot water, no heating, etc… I asked for support regarding the p-PS 2: rejected because I could not speak Flemish. The p-PS 2 was therefore discontinued. Reason: linguistic hatred. The consequences for the patient were catastrophic. The patient’s neurological condition deteriorated. Depression (cried repeatedly because she was always alone), increased spells of complex hallucinations, developed Lewy Body Disease/Dementia, developed serious gait difficulties (had to be supported wherever she went), unable to dress/undress and eat by herself, more TIAs, many falls when alone or even when I was there but not in the same room, repeated bronchitis and bronchopneumonia, muscle atrophy, constipation, dysphagia, increased swallowing difficulties, … Each of these ailments/incidents were individually successfully treated but the patient’s general condition worsened, slowly but surely. She became cachectic. In May 2010, the patient was relieved to know that there was no recurrence of the tumour. But she had already undergone so much suffering that she had lost the will to continue living under these conditions. Outwardly, she sometimes said that she wanted to fight on, but inwardly she wanted to go. The patient finally died on 16 June 2010 in my arms, not from cancer, but from exhaustion, sheer chronic stress and total lack of support. We just needed funds and support…
References: 1. Supplement (jn.nutrition.org): Recent Advances on the Nutritional Effects Associated with the Use of Garlic as a Supplement. Enhanced Immunocompetence by Garlic: Role in Bladder Cancer and Other Malignancies. Donald L. Lamm and Dale R. Riggs. Department of Urology,] Robert C. Byrd Health Science Center West Virginia University, Morgantown, WV 26506-9251.] 2. Jean-Marc Lemaître. New paradigm for cell rejuvenation. Montpellier Functional Genomics Institute. 3. Shinya Yamanaka. Current President of the International Society for Stem Cell Research (ISSCR).
Table of Organisations/Universities/Institutions Contacted in 2006
In 2006, we wondered:
Who would respond?
Who would not respond?
Who would show concern and contribute actively by proposing their collaboration, novel solutions and/or immediate research perspectives?
Who would be the first to find THE solution?
Are past reputations still deserved today (2006)?
Who are the real experts in 2006?
Please review the general link on CWINs.
CWIN 4-1 Team was disappointed by the inertia, lack of cooperation and indifference from the international scientific and medical community at the time. As it turned out, WE found the solution!
Results and conclusions of CWIN 4-1 shall be published as a Case Study.