Updates...

We went to get N's HRCT scan of the lungs done today. It seems that the dye is injected only for contrast scans, so N's high creatinine is irrelevant for a run of the mill CT. In spite of an appointment at the centre, there seemed to be an agonising wait, so the scan was cancelled. The scan is important as the lungs and the bones are the most probable targets of metastasis in bladder cancer, so we'll probably schedule it for later and have someone sent over earlier merely for the purpose of "reserving a place".

Disheartening news followed, the pharmacy we contacted through Roche has quoted CHF 15,250 for 1 vial of Tecentriq. This is prohibitively expensive for even a relatively well off Indian and doesn't even include shipping charges (~CHF 2500). While I have written to Roche to ask whether it may be made available cheaper in developing countries, I cannot be optimistic about my chances.

Meanwhile, we have contacted a couple of Ayurvedic oncologists. We will be visiting what seems to be a leading centre on Friday and will be arranging for a home visit from another practitioner as well. Let's see what they say and the therapeutic path they choose.

Scheduled to meet the oncologist later today. Mother refuses to consider chemotherapy, especially after our GP (someone I trust and respect enormously), has described it as fighting a losing battle. I can't say that I disagree but would reserve judgement until we at least meet the woman.

An eventful couple of days

Monday, 5:30 pm:
My parents visited N's primary surgeon, Dr P, who was slightly defensive and shocked at the spread. Ultracet has been replaced by a 25 microgram patch of Fentanyl, an opioid analgesic which is 80 times more potent than morphine, but is safer overall. The dosage, of course, has been titrated taking the potency into consideration. The prescription involved a lot of paperwork. Dr P suggested we speak with an oncologist to plan N's treatment. My mother opted out as she was very overwhelmed.

Monday, 8:30 pm:
My father and I met the oncologist. Unlike Dr P, she was not dismissive of chemotherapy (GemCarbo treatment), pointing out that N has fought her way through a major surgery with relative ease in spite of advanced cancer but underlining the fact that the therapy would, considering her age, be fraught with risk. Asked her about immunotherapy and targeted therapeutics. While aware of them, Dr S stated that her experience with these therapies were limited and mostly theoretical. However, she did acknowledge that they could be a viable alternative for N. Dr S prescribed tests to check the spread of the cancer (CT scan of the lungs, scheduled for tomorrow) as well as some blood work to exclude/confirm infection as a cause for elevated WBC levels.

Most of our questions remained unaddressed. Dr S understandably pointed out that most of them could be answered only after seeing N in person. The meeting with N is scheduled for tomorrow at 6:45 pm to evaluate whether N could be a potential candidate for chemotherapy or whether we would have to limit ourselves to alternatives/palliative care. Dr S was, surprisingly enough, more optimistic than myself on looking at the reports, though we'll wait and watch.

Tuesday
My mother maintains that she will not subject N to chemotherapy and has sourced homeopathic medicines from Delhi. I am uncomfortable giving N medicines whose constituents I am unaware of. Some may argue that homeopathic medicines are nothing but water (or whatever carrier), but I think that homeopaths in India don't really follow homeopathy as in the West, but use higher concentrations. While this may be a good thing therapeutically, I'd be more comfortable with water, as at least then, I'd be sure that nothing interacts with what she is having. Homeopaths are generally very secretive about their treatments as they compound their own formulations and that annoys me. I am tempted to send the medicine for chromatographic analysis.

Good news:
A lot of relatives came to visit N. She was very heartened and spoke at length after a long, long time. Her appetite remains poor though and she absolutely refuses solid food, though she confesses that she enjoys the smell of cooking. I think I'll buy a few books to keep N entertained. She is partial to Gulshan Nanda, though she absolutely loved Yashpal's Jhootha Sach.

Also, an update:
Have received a reply from Roche. It seems that Tecentriq is not available in India and that there are no trials of the drug underway here, either. They did refer me to an international pharmacy in Geneva, however, and listed out the protocol for importing the drug to India. Will do so if affordable.

Have not started N on any treatment (conventional or otherwise) so far, except palliative. Will have to make a decision in a few days along with N, who has been told very little of the metastasis. This makes me uncomfortable as well. If I were in her position, I'd like to know. Will need a way to break it gently, soon. I can only imagine the emotional turmoil it will cause her; after all, it devastated us when we heard. Came across a very promising article on chemotherapies in advanced bladder cancer to help us choose and understand.

7:42 pm:
Test reports out:
Creatinine: High (1.22)
Liver function tests: Normal
CRP: High (101.2)

Procalcitonin results awaited, expected 24th September.

This may mean that CT scan may need to be rescheduled...will have to modify diet (especially protein intake) as well. Will contact physician for input. Will a diuretic be started? Her feet did seem slightly swollen...

A hospital free weekend of research

The weekend was fairly okay. N's urostomy bag leaked into the wound dressing, so both were changed at home. Had a routine CBC done, as usual; WBCs gradually increased as usual. N is on Augmentin 625, twice a day, which does not seem to help control "infection".

Was prescribed Ultracet thrice a day for pain. It seems to relieve her, but works for only 4-5 hours, rather than 8. Have spaced the medication in such a way that the pain seems minimal. Scheduled to speak with doctor again on Monday, 19th. Due to it being a weekend, N is not stressed by doctors' visits and poking and prodding.

We on the other hand, are going through options:

Chemotherapy seems to be too toxic for someone N's age and health. There seems to be no purpose in prolonging life by a few weeks to a few months under what amounts to torture.

Roche's Tecentriq, newly approved immunotherapy drug, which binds to the protein PDL-1 associated with some bladder cancers sounds like a good option, if her tumour expresses PDL-1 excessively (we haven't yet checked). Targeted cancer therapeutics is theoretically head and shoulders better than chemotherapy. Unfortunately, this option seems to be available only in the USA and it is prohibitively expensive in that country (USD 12,500 per month). I have written to Roche (India) to check for its availability in this country and pricing. We have not received a reply, yet. I intend to exhaust any contacts available in that company to see if we can get this treatment here.

Ayurveda is another option that we are exploring. While much maligned in the West and often dismissed as quackery, the pharamcotheraputics of many of the drugs in the Ayurvedic system are sound. I feel that the problems in Ayurveda are more on the lines of lack of standardisation and problems in quality control as the system is mostly unregulated. These problems are being actively looked into and research on actives as well as formulations are being undertaken world wide. As a matter of fact, I feel that if properly systemised and updated the holistic approach of Ayurveda is actually superior to conventional medicine, especially towards multi-factorial diseases like cancer. Anyway, I digress.

CancerResearch UK has on their site listed some promising drugs in slowing tumour growth. Admittedly most studies here are on rats and mice, however considering the fact that (a) these medicines have been used for over 2000 years in India (b) the safety record of conventional drugs for this disease is pretty iffy, Ayurveda seems to be a viable alternative. Using formulations from GMP following Ayurvedic drug companies (Himalaya, Patanjali, Dabar etc.) should also mitigate many of the perceived safety risks.

I have meanwhile, compiled a list of anti-cancer formulations that are used in Ayurveda and am exploring how they work, which pathways they target etc. I will probably put them online once I get them in order. Considering the fact that they have been compiled in relative haste, I apologise in advance for their relative incompleteness.

I contacted an Ayurvedic clinic in Hyderabad. I have yet to receive a reply. Meanwhile I am looking for competent Vaidyas in the Mumbai region.

On the bright side, my uncle, N's son, will be coming over to visit N from the USA. This should please her, as she misses him awfully.