Showing posts with label ayurveda. Show all posts
Showing posts with label ayurveda. Show all posts

Friday, 23 September 2016

Mostly disappointments and life goes on...(thankfully)

23rd September, 2016:

Met Dr S. She felt that N is too frail to receive chemotherapy. My mother is relieved as she feels that N's recent treatment regimen has been nothing but exploitative on the part of her doctors. She, with reason, is disgusted with the lack of information and the patronising attitude of N's primary surgeon.

While I don't think Dr P misled us, I have maintained at all times that his team has been unprofessional and at times ignorant. Indeed, I have called them out on it. This is particularly true for Drs C, U, S2 and P2 who have withheld information, not responded to calls and have been downright rude while having only a school child's knowledge of science.  When someone does not know that negative pressure creates a vacuum, (while they casually do "negative pressure wound therapy" dressings), it should raise red flags. I sometimes wonder why there is no core science curriculum for clinicians in India after high school. Patronising someone is irritating enough. Being patronising when one is a complete and utter idiot is disgusting. I am unsurprised by the statistic that 60% of Indian doctors fail to get a licence in the UK. Most are rote monarchs produced by a flawed education system. The better ones go abroad.

To be fair, there were a few excellent ones as well, Dr V was brilliant, and Dr I was not bad. Our GP, Dr RP is brilliant and a true asset to the profession.

Anyway I digress -- physician stupidity (and I have been unfortunate to be subjected to a lot of it), always causes me to rant. Dr S felt N is frail, and my mother, disgusted with doctors, hospitals and health "care" did not think that not undergoing chemotherapy was something to be sad about. She does not see the point in prolonging N's life with torture and I find it hard to argue the point.

I was however, hopeful of immunotherapy. Unfortunately Roche India's reply came in and they stated that they had no permission to market the drug in India, so I am stuck with an unaffordable treatment option. I will try writing to Roche in Switzerland but I am not particularly hopeful. If there seems to be any headway, I will arrange to have N's PDL1 expression undertaken.

A Vaidya came for a home visit as well. I asked the Viadya for the formulation. He listed a total of 11 constituents of which two bhasmas contain mercury, so we haven't given them to N. If the accumulation time is slow, I may go ahead with them anyway, there isn't much to lose at this point, and the effects would perhaps have been apparent only years later. Years that she obviously doesn't have. Even so we have refrained. Besides, my mother felt he was grasping as he had brought pre-prepared medicines (before even seeing N), for which he charged Rs 5000, though it is a small sum compared to biologicals that are available in the Indian market (Rs 75000 for a breast cancer drug by Roche). Admittedly, I feel that there are better formulations available, and better Vaidyas too. I intend to Skype with one in a couple of days. The other wants to see N personally before prescribing or diagnosing.

24th September, 2016:

The nurse almost overdosed N with painkillers. Gave her an ultracet over the two 25 microgram fentanyl patches applied. N's complaints of pain need to be monitored exceedingly closely, as many complaints stem from irritation rather than pain (as was the case today). Removed one patch. So far so good, though drowsy. Mouth is dry, but no respiratory distress or anything nasty. Observed her for about an hour. The nurse in the next shift is much more competent, thankfully.

Had intended to go to meet a very respected Vaidya today, but my mother (and N) shot down the idea. Considering the fact that N seemed drugged to her eyeballs, I agreed. Will try to persuade them to meet the Vaidya another day.

Also, changed the vacuum dressing at home (called a technician). He did a much better job than the surgeon (as the technician had the last time, as well). The wound is very clean and has closed considerably. It should be fully closed in five to ten days' time.

It is pouring outside, and there was a bit of a scare. A wire started sparking. The electrical source was identified and shut down and the electricity suppliers called on the phone. The latter put us on hold for about half an hour. Happily we had resolved the situation (by identifying and shutting down the supply) by the time they put the call through. Absolutely useless!

We are still alive and have a roof over our heads as I write this. Hopefully tomorrow will be less eventful.

* I will list the formulation given by the Vaidya in this blog. later, along side their constituents and potential activity. I have undertaken the exercise and have it on paper.

Wednesday, 21 September 2016

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.

Tuesday, 20 September 2016

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.