करूणा और ममता ने दिये नये दृष्टिकोण

 दुख, मॉर्फिन और जादू: करूणा और ममता ने दिए जीवन के सबक

हाल ही में, मैंने अपने लखनऊ के ओपीडी में HER2-पॉजिटिव मेटास्टेटिक ब्रेस्ट कैंसर की दो मरीजों ki treatement की। दोनों महिलाएं कई प्रकार की थेरेपी ले चुकी थीं और सेंट्रल नर्वस सिस्टम (दिमाग) में मेटास्टेसेस से जूझ रही थीं। उन्होंने पहले ट्रस्टूज़ुमाब , पर्टूज़ुमाब, लापाटिनिब, कैपेसीटाबिन और टी-डीएम1 का इलाज लिया था। एमआरआई स्कैन में उनके ब्रेन मेटास्टेसेस और उससे जुड़ी पेरिट्यूमरल एडिमा का पता चला। ये मामले हमें ऑन्कोलॉजी देखभाल की जटिलताओं और चुनौतियों की याद दिलाते हैं । 

दो मारिजो ने दिये नये दृष्टिकोण (मरीजों के नाम बदल दिए गए हैं।)

करूणाजी:

आशा की झलक
पहली मरीज को फ्रंटल और पैरिएटल लोब में मेटास्टेसेस थे, जिससे उनके व्यक्तित्व में बदलाव, हिंसक व्यवहार और अनिद्रा हो रही थी। उनका परिवार घर पर उनकी देखभाल करने में असमर्थ महसूस कर रहा था, भले ही उन्हें होम-बेस्ड पैलिएटिव केयर की सलाह दी गई थी। मैंने उन्हें ओलांज़ापिन दिया और एक न्यूरोलॉजिस्ट के साथ समन्वय किया, जिन्होंने उन्हें क्लोनाज़ेपैम सुझाया। इन हस्तक्षेपों के बावजूद, उनकी हालत और बिगड़ गई।

दो दिन बाद, रात 11 बजे उन्हें इमरजेंसी में लाया गया। वह अपनी बात को सही ढंग से व्यक्त नहीं कर पा रही थी; उसकी बातें अस्पष्ट थीं, खाना खाने से मना कर रही थीं, और फ्रंटल लोब डिसफंक्शन के लक्षण दिखा रही थीं। हालांकि उन्हें शारीरिक दर्द नहीं था, उनकी स्थिति गंभीर थी।

उन्हें ऑन्कोलॉजी वार्ड में भर्ती किया गया और डेक्सामेथासोन शुरू किया गया, लेकिन उनके लक्षणों में सुधार नहीं हुआ। उन्होंने पहले से ही छह महीने तक स्टेरॉयड और तीन महीने पहले पूरे मस्तिष्क का रेडिएशन थेरेपी लिया था। प्रोग्रेसिव CNS रोग का संदेह करते हुए, मैंने उन्हें हल्की sedation के लिए 1 mg/घंटा की दर से मॉर्फिन देने का निर्णय लिया। इसका परिणाम किसी जादू से कम नहीं था। अगले दिन सुबह तक वे शांत थीं, coherent थीं, और खाना खा पा रही थीं। मॉर्फिन ने जादुई बुलेट की तरह काम किया।

उन्हें ओरल मॉर्फिन पर स्थानांतरित किया गया और सहायक देखभाल के साथ छुट्टी दे दी गई। एक महीने बाद, मैंने उनके पति से फॉलो-अप किया, जो एक सेवानिवृत्त सेना अधिकारी और सुरक्षा गार्ड के रूप में काम कर रहे थे। उनका जवाब, “सब बढ़िया है, साहब,” ने मुझे चकित कर दिया। मरीज और उनके पति अगले दिन ओपीडी में आए, और उन्होंने मुझे coherent “नमस्ते” कहकर अभिवादन किया। हालांकि उनके स्कैन में रोग की प्रगति दिखी, उनका प्रदर्शन स्तर ट्रास्टुजुमैब डेरक्सटेकन शुरू करने के लिए पर्याप्त था। चार महीने बाद, वह अभी भी अपने रोग से लड़ रही हैं, लेकिन मॉर्फिन ने उनकी जीवन गुणवत्ता में उल्लेखनीय सुधार किया।

ममताजी:

देखभाल की सीमाएं
दूसरी मरीज की स्थिति समान लेकिन अधिक गंभीर थी। उन्हें प्रोग्रेसिव दिमाग, लिवेर मे रोग था, साथ ही वजन घटाव और दिमाग रेडिएशन के बाद के प्रभाव थे। उनका परिवार घर पर उनकी देखभाल करने में असमर्थ था, इसलिए उन्हें हमारे पैलिएटिव केयर सेंटर में भर्ती कराया गया। उन्हें निरंतर मॉर्फिन इन्फ्यूजन पर रखा गया, जिससे उनकी अंतिम घड़ियों तक sedation प्रदान किया गया। उनके पति, जो उनकी पीड़ा से अभिभूत थे, बार-बार पूछते थे कि क्या अधिक कीमोथेरेपी से मदद मिल सकती है।

हालांकि मेरा दिल कड़वे सच जानता था, मैं उन्हें बताने में असमर्थ महसूस कर रहा था। अंततः, मैंने उन्हें समझाया कि पांच साल की लड़ाई ने सभी उपचार विकल्पों को समाप्त कर दिया है। इस सच्चाई को स्वीकार करने में उन्हें एक महीने का समय लगा।

इलाज और पैलिएटिव केयर पर विचार

HER2-टारगेटेड थेरेपी में प्रगति क्रांतिकारी है, लेकिन CNS मेटास्टेसेस अब भी एक कठिन चुनौती बनी हुई है। ये मामले मरीजों और उनके परिवारों की गहन पीड़ा को उजागर करते हैं। देखभाल करने वालों पर भावनात्मक और शारीरिक बोझ बहुत अधिक होता है। कठिन भविष्यवाणियां देना और ऐसी कठिन स्थितियों का प्रबंधन करना ऑन्कोलॉजिस्ट के लिए भी बेहद दर्दनाक होता है।

मॉर्फिन ने दोनों मामलों में जीवनरेखा के रूप में काम किया, पीड़ा को कम किया और ऐसी गरिमा बहाल की जो अत्याधुनिक उपचार नहीं कर सके। जहां ट्रास्टुजुमैब डेरक्सटेकन जैसी नई थेरेपी उम्मीद जगाती है, वहीं ये अभी भी आम जनता के लिए सुलभ नहीं हैं। इस बीच, मॉर्फिन—जादुई बुलेट—अभी भी अनमोल है।

ऑन्कोलॉजी का बदलता परिदृश्य

कैंसर उपचारों के कारण जीवनकाल बढ़ रहा है, लेकिन यह नई चुनौतियां भी ला रहा है। CNS मेटास्टेसेस, संज्ञानात्मक हानि और जीवन की घटती गुणवत्ता पारंपरिक ECOG जैसे प्रदर्शन स्थिति पैमानों पर पुनर्विचार की मांग करते हैं।

चरण IV कैंसर सर्वाइवर्स की बढ़ती पैलिएटिव केयर आवश्यकताएं अभूतपूर्व हैं। केवल जीवन को बढ़ाना पर्याप्त नहीं है; सामाजिक, भावनात्मक और मनोवैज्ञानिक दर्द को संबोधित करना भी जरूरी है। इन अदूरदर्शित जरूरतों के लिए पैलिएटिव केयर में अनुसंधान और नवाचार की सख्त आवश्यकता है।

इन दोनों मरीजों ने मेरे दृष्टिकोण को गहराई से प्रभावित किया है। उनकी यात्राएं ऑन्कोलॉजी में पैलिएटिव केयर की महत्वपूर्ण भूमिका को रेखांकित करती हैं। जहां आधुनिक उपचार जीवन को बढ़ाने की सीमाओं को पार करते हैं, वहीं वे रोग को CNS तक भी पहुंचाते हैं, जिससे पीड़ा बढ़ जाती है। मॉर्फिन, हालांकि, एक उम्मीद की किरण बनी हुई है—एक सरल, सुलभ समाधान, जो तब भी राहत प्रदान करता है जब कुछ और नहीं कर सकता।

लंबा जीवन जीना इलाज का एकमात्र उद्देश्य नहीं होना चाहिए। इसके बजाय, हमारा ध्यान इस बढ़े हुए जीवन को सार्थक, गरिमामय और अनावश्यक पीड़ा से मुक्त बनाने पर होना चाहिए। एक ऑन्कोलॉजिस्ट के रूप में, हमें नई उपचारों के वादों और करुणामय देखभाल के शाश्वत सिद्धांतों के बीच संतुलन बनाना होगा।

अमोल पटेल, 

लखनऊ

मेडिकल ऑन्कोलॉजिस्ट (चिकित्सकीय कैंसर विशेषज्ञ)

Shoe Malfunction

Shoe malfunction 

Have you ever been embarrassed by wardrobe malfunctions? 

And have you broken your shoes into pieces in important ceremonies? 

In western dictionaries, wardrobe malfunction is a well defined word, meaning accidentally exposing the body part due to slip of an article or cloth and any objects. Somehow, in Indian culture, we do not have such a specific terminology. Possibly in Indian Sari and dhoti costumes, some of the body parts are always exposed and we did not bother much about it.  Today, I had a very unique experience of shoe malfunction. What malfunction, it broke in front of the massive crowd. 

On the morning of 30 Jan2022, we woke up early and prepared ourselves for a visit to an Indian Navy’s warship. It was a  “Family Day at Sea”. The families are taken to ride on a warship. Amazing. But this amazing experience came to me with a lot of embarrassment. What happened was, I polished my war shoes, these shoes are bigger than high ankle shoes, and they were in perfect shape. We drove till the dockyard, parked our vehicle and walked till the warship. It was about 1 km. We were received by the crew of the ship and greeted. It was a great honor for all four of us, myself, my wife and my two daughters. It was going well till I noticed some black material was coming out of the shoes by 9 am. OH my gosh. The soles of both the shoes were in a broken state, the material was coming out of the sole as if some garbage bag had opened up. It wasn’t a good day for me.

Anyway, these days I have feelings of contentment and don’t take any form of embarrassment in my head. And on top of that, I am reading IKIGAI. 

I kept sitting on chair and avoid exposure of shoe malfunction as if nothing happened. We were at the top floor of the ship. We thoroughly enjoyed the next 3 hours of navy drills and amazing war activities. The ship was a classic destroyer and it has really destroyed my shoes? Actually the ship wasn't responsible for destruction. I hardly used those shoes  in the last 2 years. Anything can go wrong, if we do not use them. Similar to what is mentioned in IKIGAI, we need to keep working to maintain good health and live longer. Simply, these shoes missed this IKIGAI advice. After assessment of the soles, I thought I will manage to walk with those broken and circumvent the crisis. It was not less than a war. Anyway, we came down by steel staircase for lunch. I tried to hide the malfunction. However, the last part of the sole under the rt heel just came out of the shoes in front of the escorting officer. Wife was 1000 times more embarrassed than me. I just said, confidently “I will manage”. She said, ask for some help. The escorting officer was listening to our conversation carefully. He directed one of the junior fellows to take me to the wardroom and some other officer will certainly help me to get out the other shoes, he assured. I liked his confidence. I went to the wardroom and was asked to wait in a cabin. After 10 minutes, the size 9 war shoes came. One of the senior officers offered help. I wore the shoes and came back to the lunch area on deck. Wife gave a big laugh at me and so did the children. I wasn’t that bothered. The reader might be surprised, how come ? or some of you may think, it can happen with anyone. Nothing a big deal.

No. I had such an experience in the past. That is why I did not bother much. I was in my first year of MBBS. Not similar to this, those shoes were repaired three times. Luckily, that day, I was walking alone and such walking alone scenes are rare in medical  college. You are always surrounded by friends or batchmates. The half of the sole just came out like that. I always used to think how bad my economic situation was or may be I never prioritize the monthly expenditure for better shoes. Those days were different. The cut to cut expenses, we do prioritize spending money on getting gifts for best friends on their birthdays. When I joined MBBS, my family was really going through difficult times in terms of finances. It was very easy that day to blame the financial crisis since then I always felt it was a hardship.

But, what happened today was a great learning experience. We easily blame situations. The embarrassment was the same, situations were different. Perceptions were entirely different. Today, I earn more than 40 lakhs per annum. But today’s shoe malfunction took me 26 years back. 

So do not take embarrassment personally and do not take them to heart. People will laugh at you sometimes. Some people will come forward to help you out. Accept the help and move ahead in life and reciprocate the help. I went to the officer’s house next day who dedicated his shoes without knowing me to return his shoes with a bottle of wine. 

We kept the blaming the situations and we certainly have a habit of keeping the others in the witness box or making others as culprits. These are natural tendencies. Narrating this chapter is equally important to me, simultaneously I am writing for cancer patients not to blame the others for their cancers.

Easy to blame but it is more easier to get out of embarrassment.

Amol Patel 

01Jan2023

0900pm 

Should We rename CANCER as "CHRONIC PROLIFERATIVE DISEASE".

SHOULD WE RENAME CANCER AS "CHRONIC PROLIFERATIVE DISEASE"

It was 14 Dec 2019, evening 1350 flight from Delhi to Indore. I was excited to visit my native place for cancer awareness campaign. When it comes for making people aware about the diseases and how to control the diseases, prevention, early diagnosis and treatment, I am always ready to discuss and spread the news. This topic is very close to my heart and it is meaningful too.. 

Mr Krishna Bhai from Nashik, was also accompanying but in different flight. He always keep the positive energy flowing around. I owe him for many reasons. The involvement of doctors and people of Taloda was extraordinary. They asked very intriguing questions enthusiastically. We conducted lecture series at Shahada also. One of the doctor at Shahada asked one brilliant question. Why people do not want to attend the awareness campaign? 

Spontaneously I could answer to this difficult question with one word - "Fear". The fear is human nature and everybody wants to get away with Fear or any such unpleasant talk, discussion and perhaps investigation. "If ignorance is bliss then, avoidance of unpleasant truth is human nature".  And jokingly, I exclaimed...."CAN WE CHANGE THE NAME OF THIS DISEASE - FROM CANCER TO ...MAY BE CHRONIC PROLIFERATIVE DISEASE".

It was a tremendous learning. At grass root level, many philanthropic dedicated works are going on. What they need is an expert advice from intellectuals and some time from the doctors who are treating cancer. 

I made my mind to frequently visit these remote places. 

Read more »

Prevent Future Poverty - urgent need for expansion of Ayushman Bharat

Government of India enrolled Prime-Minister Jan Arogya Yojana “Ayushman Bharat” with much enthusiasm and hoping to take care of India’s rural and urban poor. This Yojana will benefit the poor and estimated beneficiary number is 500 million (1). It ensures ₹ 5,00,000 per family per year. Ayushman hospitals are also registered for paperless and seamless benefits are intended for the clientele. The scheme was lauded by national and international experts. In coming time, around 10 core people will benefit from this Yojana (scheme). For poor, the guilt feeling will be vanished and family will be looked after by nation, by taxpayers money. Cancer care has been included in this scheme. 

Out of pocket expenditure in India is a neglected cause of poverty. Study by Selvaraj and Farooqui, published in BMJ estimated that in 2011-2012, 38 million people were pushed to below poverty line because of health expenditure on treatment of cancer, coronary heart diseases, mental disorders and genitourinary diseases (2). Cancer has overcome cardiovascular diseases as the most common cause of death in higher income countries (3). Similar, trend will emerge in next two decades in India, further making affordability and accessibility as a major health concern for people and policy makers.

Whenever natural calamity like earthquake, floods and tsunamis hits nation, many hands are opened up and government agencies also provide the relief in terms of monetary help. I feel, cancer diagnosis or detection of it in family is like a natural unexpected calamity. 

For example, a clerk of age 42 years, works in private school earns around ₹ 15,000/month with dependent two children and parents, wife does a household work and adds around ₹ 5000/month to family’s income gets detected with a cancer. He does not have Ayushman Bharat card. How will he manage? What this man did wrong??? Being a common man, not being too poor to avail government facilities. Who will speak for these people?

While Ayushman Bharat will take of poor, what about these future poor? These people are the productive workforce of the nation and society, with lot of hopes and dreams for the future.

There is an urgent need to take care of these people. Public-Government-Insurance trio can solve the problem of this aspiring group of the society. They can be protected from poverty by mutual understanding and participation. 

Jai Hind

by Amol Patel 

01.10.2019

References

1.         Chatterjee P. India launches Ayushman Bharat’s secondary care component. The Lancet. 2018 Sep 22;392(10152):997.

2.         Selvaraj S, Farooqui HH, Karan A. Quantifying the financial burden of households’ out-of-pocket payments on medicines in India: a repeated cross-sectional analysis of National Sample Survey data, 1994–2014. BMJ Open. 2018 May 1;8(5):e018020.

3.         Dagenais GR, Leong DP, Rangarajan S, Lanas F, Lopez-Jaramillo P, Gupta R, et al. Variations in common diseases, hospital admissions, and deaths in middle-aged adults in 21 countries from five continents (PURE): a prospective cohort study. The Lancet [Internet]. 2019 Sep 3 [cited 2019 Sep 30];0(0). Available from: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)32007-0/abstract

World Cancer Day - Say no to Inked paper wrapping of Food

Today, 4th Feb is celebrated as World Cancer Day. Across the earth, cancer is on the rise and especially so far developing and under developed countries. Cancer a furious word for each of us. There are many ways to tackle this problem. One little correcting measure will help us in long turn.
In our country, street food is widely consumed. Samosa, Pani-puri, Bhel, Kacchi Dhabeli etc... are famous food items and routinely are being sold by street vendors and also retailers. We as Indians are very foody and enjoy multiple cushiones. We entertained guest with enthusiasm and adore relationship and take care of food, its freshness, spices and various ingredients but when it comes to serving the food ......... many a times we neglect the hygiene part of it, especially for street food.
Street food is wrapped in old news paper or other inked papers. On this cancer day, I want to everyone to learn here that, the ink used in News paper is carcinogenic and Government of India, already published guidelines for not using these papers. 

Cancer Literacy - Need of hour

As Mahatma Gandhi said once, “if you teach one female, you teach complete family”. 

At All India Institute of Medical Sciences, New Delhi, (when I was doing senior residency in Medical Oncology), we realized one bitter truth. Majority of our cancer patients are presenting in either in metastatic diseases (stage IV or last stage) and with very poor general health. This kind of clinical situation creates a challenging situation for patient, their families, doctors, medical care system, nation and finally economic state of country where resources are mere wasted in the name- emotions and empathy.  And all the time, this is attributed to illiteracy.

Cancer is on the rise. Worldwide cancer cases are increasing day by day. India is a diverse country with 1.33 billion population and varied geographic distribution. While cities are getting overcrowded and villages are becoming thin, though the GDP is increasing but in certain states the literacy remains a problem. The purchasing power is increasing but simultaneously people are ignorant for their diseases. This is a bitter truth. We have mobile phones. We can operate them. We can count money but when it comes to health, we then become illiterate.

Literacy has been defined in India. People of age seven and more, who can write & read and understand in any language are considered literate for census purpose. Though we have achieved the benchmark of 75% literacy rate, but it is varied among states and also marked difference in genders. As per census 2011, Bihar has lowest literacy rate with 63.8% and female literacy rate is 53.3%. Uttar Pradesh and Chhattisgarh also has similar rates. The literacy rates are more in Southern states, but uniformly female literacy rate is less as compare to males. That means almost every second female is illiterate. We can imagine our state of cancer literacy.

There are various issues apart from illiteracy, like personal beliefs, cultural taboos and denial of deadly disease among the educated and affluent societies. There is another large issue. Due to denial, lot of patients visit “Babas, Tantricks and Quacks”. Some of them also take opinion and treatment from Ayurvedic and Homeopathic specialists.  Ayurveda and Homeopathy sciences are useful but they also have limitations. We have witnessed the classic example of the famous cricketer. Politicians are travelling to USA for their allopathic treatment.

When I say, breast cancer is curable in early stages, that means 90-95% patients of early stages are curable when all modalities are used including surgery, chemotherapy, radiotherapy and hormonal therapy. It is a proven fact. Such kind of evidence is not found in Ayurveda and Homeopathy.

Anyway, the ignorance whether it is due to illiteracy or other reasons for cancer is devastating for families in the end. The very purpose of writing this is to make public and per se nation to understand about cancer. Many of the cancers are curable now if they are treated during the early stages.

In real world, it is very difficult to understand and get statistics for literacy for cancer. However, health care providers, doctors, NGOs and governments should come together for improving the literacy rate of cancer. If today Mahtma Gandhi would have been alive he must have said this-
" if we teach one female about cancer, generations learn.”

Referral System: a call for innovation

Recently I got a patient from Mujjafarpur, Bihar. It is 1000 km from Delhi and it takes long 2 days to reach Delhi from this place if your train is in time. In India, still 70% of population still stays in rural area. The basic needs - ROTI, KAPADA, MAKAN of human beings are fulfilled to 90-95% of our population but what is about the the basic health care? Needlessly we all believe, still it is poor state. If basic health facilities are out of reach for the most of the Indian patients, then what about the second and tertiary care referral system. One can imagine the gaps in the system and patients are still awaiting the best of treatment. 

My patient is a 49-year-old female, suffered from an episode of seizure. For that she was reviewed locally at Mujjafarpur, underwent CT scan of Head and received anti-seizure treatment. Subsequently she did not improve and had recurrent seizures and from there she was referred to Patna. One of the astute Neurophysician at Patna, reviewed the case, he immediately ordered MRI brain for a small lesion which was detected on CT scan. It was suspected as small clot of blood. However, on MRI the disease was not detected as bleed, but report came as a small mass, may be a tumor. With this, patient underwent a series of investigations at Patna and then subsequently she self-referred to SGPGI Lucknow, one of the prestigious medical institute in northern India. She was diagnosed as a case of Brain tumor and she was advised for the treatment. A middle-aged proprietor of her own school, started first symptom in the month of December, started on some medication for seizure. She was not improving with the treatment and now diagnosed for with brain tumor. It look almost five months to reach to a diagnosis. Again, when no improvement with treatment, she again self referred to AIIMS, New Delhi. 

She was evaluated thoroughly at AIIMS and finally diagnosed as Leptomeningeal Metastases. That means disease is spread to brain from some other organ in the body, mostly in females the disease comes from Breast in this age group. When I first saw her she had persistent headache, not able to open her eyes and intractable vomiting. She was in agony and I was also in the same for delayed diagnosis. For this kind of disease, there is no much to offer other than palliation.

After discussion with faculty members, we started her on treatment. Radiotherapy was given to her head. She improved symptomatically. Later with mutational studies in her blood, lung cancer was diagnosed and she was placed on oral form therapy. She is still alive.

Anyway, after discussing this case…. What I feel is, there is so much delay in reaching to tertiary care hospital. For this educated patient it was five months…….. How we as an Oncologist are going to provide the treatment and achieve the best of outcome. It is really saddening for our country till date we do not have referral system for patients. What would have been the perfect system? We all know there is not a perfect system. Now it is a high time that awareness of cancer should be the national public service priority and it should include not only the population as such but it should also include the doctors, nurses and paramedics.