Saturday, April 9, 2022

How Do Somatostatin Analogs Work? diet plays a role in your symptoms. 

 



Metastatic neuroendocrine cancer is not all about diarrhoea as you will see below – it’s also about digesting the food to maximize the nutrients in it.  Even diarrhoea is not necessarily caused by so-called “carcinoid syndrome” (e.g. oversecreting serotonin). 

Somatostatin analogues are a synthetic form of somatostatin hormone and are used to reduce the production of various hormones in the body, particularly hormones produced by tumours. The U.S. Food and Drug Administration approved three drugs, namely, octreotide, Ianreotide, and pasireotide in this drug class.


Some foods are a quicker journey from mouth to the toilet. 

Yet in my case it is diarrhoea. When stomach aches increased along with mortifying diarrhoea,


This is a complex topic and consequently, as we know von Hippel-Lindau or VHL is a rare syndrome.  VHL may occur in up to 10 organs of the body making you a tumour producing factory also there is a possibility of neuroendocrine cancer.VHL is a genetic form of cancer. 



Neuroendocrine tumours (NET) are a group of diverse neoplasms arising from cells of neuroendocrine origin. Neuroendocrine tumours (NETs) are rare tumours that start in neuroendocrine cells. 




Most NETs develop slowly over some years. They may not cause symptoms in the early stages. It’s not unusual for people to find that a NET has already spread to another part of the body when they are diagnosed. 


When cancer spreads to another part of the body, it is called metastasis. Cancer cells break away from where they began (the primary tumour) and travel through the lymph system or blood.


Amino Acids

Amino – relating to, being, or containing an amine group.  Amino acids are molecules that combine to form proteins. Amino acids and proteins are the building blocks of life. When proteins are digested or broken down, amino acids are left. The human body uses amino acids to make proteins which help the body (amongst other tasks) digest foods. Amino acids can also be used as a source of energy by the body. 


Amines in food are chemicals that occur naturally, caused by bacteria that break down amino acids. They are related to the inorganic compound ammonia. Higher levels of amines are found in fermented, charred, grilled, overripe, over cooked or decomposing foods. Enzymes found in the human gut, liver and intestine are responsible for breaking down amines. In most people, amines are quickly broken down and cause no problems. However, if your enzymes aren’t functioning properly, amines can build up in the body which can cause allergic symptoms or intolerances in some people. Some medications including antibiotics, older types of antidepressants, and herbal and nutritional supplements can deplete enzymes.



Essential amino acids – cannot be made by the body. As a result, they must come from food, e.g. serotonin.

Nonessential amino acids – our bodies can produce the amino acids, even if we do not get them from the food we eat.

Conditional amino acids – are usually not essential, except in times of illness and stress.

Biogenic Amines – also known as Vasoactive or Pressor Amines – the NET effect


Some amines are also neurotransmitters, such as the established biogenic amine 

which cause a host of chronic inflammatory conditions, including migraines. 


I was always a woman lying on the couch with a migraine. Migraines have been linked to amines in food.


The most common foods that can cause migraines include 

  • canned soup, processed meats, chocolate, olives, onions, overripe avocados, tomatoes and bananas, soy sauce, smoked and pickled foods. 


Experts recommend elimination diets to find the food/s responsible for triggering migraines however it is difficult because symptoms can be delayed and foods have a cumulative effect. We recommend consulting with your doctor rather than just testing your own elimination diet.




  • The neurotransmitters,  are; the three catecholamines—dopamine, norepinephrine (noradrenaline), and epinephrine (adrenaline)— but also histamine and serotonin. Only histamine is found in foods.  The others are generated by other sources, for example, serotonin is converted from tryptophan which is an essential amino acid.

Histamines are both produced by the body and consumed in foods. 


Histamine helps with communicating messages in the brain, triggering the release of stomach acids for digestion and following an injury or allergic reaction. Histamines can make you sneeze, itch, cough and scratch. An overreaction in the body is the cause of allergic reactions that we use antihistamines to relieve.


Common symptoms include headaches, migraines, nasal congestion, hives, fatigue, nausea and vomiting. Some drugs including opioids, muscle relaxants, and alcohol cause a histamine release from immune cells. 


  • Fish is a risky food for high histamine levels and scombroid poisoning. It occurs when the fish is not kept cold so biogenic amines form. 

  • Fresh, canned or smoked fish may be affected particularly if it is a dark meat fish such as tuna, kahawai, mackerel, bonito, kingfish, WA salmon, sardines or blue marlin. Heating or re-cooling can’t destroy amines once they have formed.


As well as histamine, there are other biogenic amines, including tyramine, putrescine, spermine, spermidine, and cadaverine. These compounds form during microbial fermentation of food (desired or not) or food spoilage. 

Classify amines as primary, secondary or tertiary depending on the number of carbon atoms bonded to the nitrogen atom. 


There are several types of amines in food. Two amines that can cause health problems are phenylethylamine and tyramine.

Vasoactive is a keyword that explains the reactions some people might have when they already have raised levels of particular hormones such as catecholamines (normally pheochromocytoma/paraganglioma), serotonin (mostly midgut), and histamine (mostly foregut including lung).


Pressor amines are those which can raise your blood pressure, care should be taken where you already suffer from elevated blood pressure (hypertension). Again, this is a common side effect of those with catecholamine secreting NETs (i.e. pheochromocytoma/paraganglioma).


The effect of biogenic/vasoactive/pressor amines in ‘aged food‘.  These amines are produced by bacteria during fermentation, storage or food decay. 

Some biogenic amines are also hormones – It’s complicated. Obviously this is not just a serotonin problem – it is actually a much wider issue when you consider ‘vasoactive amines’ and ‘pressor amines’. They are precursors for catecholamines such as adrenaline, which trigger some NETs to secrete vasoactive substances, which cause symptoms or in extreme cases, hormonal crisis. Tyramine is the most active of these amines. 

Other strongly active vasoactive amines found in food include histamine that can cause strong dilation of capillaries, and also cause hypertensive crisis. Reported reactions from these vasoactive amines are

  •  acute hypertension, headache, palpitations, tachycardia, flushing, and in extreme cases, unconsciousness. As a general rule, tyramine and other pressor amines are usually only present in aged, fermented, spoiled protein products. 


What are the trigger foods for those with ‘carcinoid syndrome’?


Most frequently reported trigger foods or habits include:


Eating larger meals

Eating high-fat meals

Drinking alcohol

Eating very spicy foods

Eating raw tomatoes

Eating foods with a high or moderate number of amines (see table).


This abbreviated list should be OK for most. 


Foods High in Amines    Foods Moderate in Amines

  • Aged cheeses—cheddar, stilton, camembert, etc.

  • Alcohol—all types

  • Smoked, salted, or pickled fish and meats

  • Yeast extracts and “hydrolyzed” proteins–like marmite/vegemite, or used for flavoring processed foods, brewer’s yeast, nutritional yeast

  • Fermented foods—tofu, miso, sauerkraut, shrimp paste, fish sauce, soy sauce

  • Caffeine—coffee, cola

  • Dark chocolate, milk chocolate, cocoa powder

  • Peanuts, brazil nuts, coconut

  • Avocado, banana, raspberries

  • Soyfoods—tempeh

  • Fava beans

  • Certain vegetarian meat substitutes—check the label for ingredients

Better to eat 4 to 6 smaller meals, instead of 3 larger meals.

Choose a diet higher in protein

Best choices include: 

  • fresh fish, chicken, turkey, lean beef; beans and lentils; eggs; low-fat dairy like milk, yogurt, cottage cheese – undeerstanding about the importance of protein for NET patients – is essential

Reduce your fat intake

Which I have experienced to be beneficial for diarrhoea depressions and midnight stomach cramps.


Choose the healthiest fats, including extra virgin olive oil, nuts, seeds (if tolerable)

Cook vegetables for improved digestibility

To minimize exacerbating diarrhea, limit or avoid wheat bran and foods made with wheat bran, prunes, dried fruits, and popcorn

Experiment with foods that are lower in amines (see table)

Foods Lower in Amines

  • Fresh lean meats, fresh poultry, fresh fish

  • Most vegetables—but cooked may be better tolerated than raw

  • Fruits in moderate amounts—but not banana, avocado, raspberries

  • Grain foods, starchy foods—lower fiber or soft cooked grains may be most tolerated

  • Un-aged cheeses and dairy—low fat cottage cheese, ricotta cheese, mozzarella cheese; low fat yogurt or kefir; low fat cream cheese; low fat milk or low fat lactose-free milk

  • Fresh soyfoods—soymilk, edamame

Keeping a food and symptom diary may be helpful. Record your daily food and drink consumption and any symptoms  experienced. Like I have start to notice a pattern.




One thing I would say to people is that the amines issue is quite relevant if you have an over-secreting NET where certain amines including vasoactive and pressor kind might cause reactions. In actual fact these reactions to these types of foods are not limited to NETs, anyone can have this type of reaction if eating too much of them.


The issue can be exacerbated in NET patients who have highly elevated levels of (say) serotonin with carcinoid syndrome, and with certain other hormonal syndromes such as catecholamine secreting Pheochromocytoma/ Paraganglioma.


For those who are experiencing digestive issues, are non-syndromic but who have had surgery and /or other therapies, amines might be less of an issue (other than when being tested for 5HIAA) and you may need more focus on other dietary guidance, e.g. if you have had bowel surgery, low and high ‘residue’ foodstuffs (i.e. essentially easy to digest, normal correlates to low and high fibre) may be something to prescribe but they are normally only a temporary solution allowing the bowel to heal gently.


One study revealed about 30% of adult women in the U.S have thyroid nodules that can be diagnosed with ultrasound, making it the most common endocrine problem in the country. Thyroid nodules are abnormal growths in your thyroid gland. You could have one or several nodules and it could either be full of liquid or blood. About 10% of cases are cancerous. It is estimated that women are susceptible to thyroid nodules four times more than men.


Sometimes the tissues of the thyroid gland can get cancerous, forming thyroid cancer. The symptoms are usually a lump in the neck, trouble swallowing or breathing, constant cough or a hoarse voice. If caught early, it can be treated successfully.


A 34-year-old woman was found to have a primary NEN of the brain, and she had recurrence with identical histology 10 years later. Extracranial NENs were excluded. She had routine surveillance for the first 5 years with MRIs and positron emission tomography/CTs after the initial presentation which was treated with radiation followed by cisplatin and etoposide.


the medical records, computed tomography (CT) of magnetic resonance imaging (MRI) of 105 patients with secondary brain tumors. The metastatic lesions noted on CT scans of MRI ere matched with a predetermined standard sheet containing axial images with shading on the border zones. To be included in the border zones, the center on more than 50% of the lesion had to be situated within these zones.


The results demonstrated that brain metastasis occurs in the vascular border zone regions and the gray and white matter junction more frequently than previously recognized, and also supported the notion that metastatic emboli tend to lodge in an area of sudden reduction of vascular caliber (gray/white matter junction) and in the area most distal vascular field (border zone).


Octreotide is a synthetic octapeptide analog of somatostatin. It binds to somatostatin receptors (SSTR) subtypes 2 and 3 found in the pancreas and subtype 5 found in the intestine and inhibits the blood flow, gastric secretions, splanchnic hemodynamics, pancreatic secretions, intestinal motility, and all gastroenteropancreatic (GEP) endocrine secretions; suppresses luteinizing hormone response to gonadotropin-releasing hormone secretion, and decreases growth hormone (GH) and insulin-like growth factor 1 (IGF-I). It is used to treat acromegaly, diarrhea, variceal bleeding, and GEP neuroendocrine tumors.


 

Lanreotide is a synthetic octapeptide analog of somatostatin that works by binding specifically to SSTR-2 and SSTR-5 with a lesser affinity. Lanreotide inhibits multiple endocrine, neuroendocrine, and exocrine mechanisms such as decreasing circulating total and free IGF-I and treats neuroendocrine tumors that secrete excessive amount of growth hormone (acromegaly) or other active hormones or neuropeptides. Lanreotide is used for the treatment of acromegaly and to relieve the symptoms of neuroendocrine tumors.


Pasireotide is a synthetic long-acting cyclic peptide that binds to human somatostatin receptors 1, 2, 3, 4, and 5 and inhibits the release of human GH, glucagon, and insulin. Pasireotide is used for the treatment of Cushing’s disease and acromegaly. It also acts as an antineoplastic agent.


HOW ARE SOMATOSTATIN ANALOGS USED?

Somatostatin analogs are given as intramuscular and subcutaneous injections and oral tablets to treat the following:


Acromegaly

Carcinoid tumor

VIPoma (a type of pancreatic neuroendocrine tumor)

GEP neuroendocrine tumors

Carcinoid syndrome

Cushing’s disease

Diarrhea 

Variceal bleeding


This link has the most complete list of SEs

https://www.rxlist.com/somatostatin_analogs/drug-class.htm


WHAT ARE SIDE EFFECTS OF SOMATOSTATIN ANALOGS? 


Side effects of somatostatin analogs may include:


    Nausea and vomiting

    Injection site reactions

    Diarrhea

    Headache

    Dizziness 

    Weakness

    Fatigue 

    Sweating

    Cholelithiasis 

    Abdominal discomfort

    Indigestion

    Constipation

    Flatulence 

    Upper respiratory tract infections

    Hyperglycemia (high sugar levels)

    Hypertension (high blood pressure)

    Arrhythmias (irregular heartbeats)

    Conduction abnormalities

    Biochemical hypothyroidism

    Elevated liver enzymes

    Pancreatitis 

    Muscle and joint pains

    Anaphylaxis (life-threatening allergic reactions)


Dopamine is a chemical messenger in the brain that signal other nerve cells. Dopamine is involved in reward, motivation, memory and attention and is blamed for addiction. As well as emotional responses, dopamine controls body movement so it is important for both physical and mental wellbeing. 


They have used dopamine to treat Parkinson’s disease, Huntington’s disease, and depression, anxiety disorders, schizophrenia, obsessive-compulsive disorder, and attention deficit hyperactivity disorder (ADHD).


Similar to dopamine, serotonin is a chemical and neurotransmitter that impacts mood, anxiety and happiness. Large amounts of serotonin are released in people using recreational drugs and may damage the nerves that contain serotonin. Produced in the brain and intestines, serotonin can’t cross the blood-brain barrier. The brain must produce any serotonin used in the brain.  


The body produces more serotonin after eating something that is toxic or irritating. The increased level of serotonin causes the food to move through the body faster and be expelled in diarrhea. 


Schizophrenia is an illness where people experience episodes of delusions and hallucinations. Genetics, substance abuse and trauma, particularly in childhood, can cause schizophrenia. Schizophrenia starts in the late teens to early 30s.     


In the last few years there has been research conducted into the role of amino acids and biogenic amines as a potential cause of schizophrenia. One study found people with psychotic symptoms had higher levels of some amino acids and biogenic amines and lower levels of others compared to the control group with no schizophrenic symptoms.

List of Foods High in Amines


Vegetables


Broccoli and cauliflower

Rocket

Tomato

Fruit


Ripe bananas

Papaya and pawpaw

Fig

Custard apple

Mango

Coconut milk and cream

Proteins


Pork and turkey meat

Frozen fish products

Canned salmon and sardines

Nuts and Seeds


Almond, brazil, chestnut, hazelnut, macadamia, peanuts and pistachio nuts

Pumpkin, sesame, sunflower seeds

Oils


Copha

Coconut oil

Olive oil

Peanut oil

Foods that are very high in amines include:


Vegetables


Avocado

Eggplant

Spinach

Tomato (dried, puree, paste, sauce)

Fruit


Berries, cherries, currants

Citrus, grapes, kiwifruit, pineapple, passionfruit, plums

Dried fruit

Proteins


Aged beef

Bacon and ham

Chicken nuggets

Sausages

Canned tuna and anchovies

Meat pies

Cereals


Breakfast cereals with dried fruit and nuts

Condiments


Gravy and sauces

Fish, oyster, soy and miso sauces

Tomato and barbeque sauce

Tomato paste

Curry powder

Vinegar (except malt vinegar)

Nuts and Seeds


Hummus

Almond and hazelnut meal

Peanut paste

Roasted nuts

Sesame and mustard seeds

Coconut

Oils


Packaged salad dressings

Extra virgin, avocado, sesame oils

Drinks


Fruit juices

Soft drink

Chocolate drinks

Fruit cordials

Vegetable juices


Thursday, April 7, 2022

He who commits wrong or condones the same, May your contempt singe like a reed in flame

 


তোমার ন্যায়ের দন্ড

তোমার ন্যায়ের দন্ড প্রত্যেকের করে
অর্পণ করেছ নিজে। প্রত্যেকের ‘পরে
দিয়েছ শাসনভার হে রাজাধিরাজ।
সে গুরু সম্মান তব সে দুরূহ কাজ
নমিয়া তোমারে যেন শিরোধার্য করি
সবিনয়ে। তব কার্যে যেন নাহি ডরি
কভু কারে। ক্ষমা যেথা ক্ষীণ দুর্বলতা,
হে রুদ্র, নিষ্ঠুর যেন হতে পারি তথা
তোমার আদেশে। যেন রসনায় মম
সত্যবাক্য ঝলি উঠে খরখড়গসম
তোমার ইঙ্গিতে। যেন রাখি তব মান
তোমার বিচারাসনে লয়ে নিজস্থান।
অন্যায় যে করে আর অন্যায় যে সহে
তব ঘৃণা যেন তারে তৃণসম দহে।

– রবীন্দ্রনাথ ঠাকুর (নৈবেদ্য  হতে সংগ্রহিত)

Tomar Nyayer Dando (Your Mace of Justice)
Translation based off an original by Dilip Mitra

Your mace of justice You bestow upon Man
On the judge’s seat, You grant me this place
And to rule from it You have commanded, o Lord.
May I uphold your glory, with justness and grace.

This granted honour, this onerous task,
I pray to You that I perform,
With head bowed and a reverent heart,
And without fear, uphold Your norm.

Where mercy is a flaw, if You sound
May my ruthlessness know no bound
And at Your gesture, through my voice
May truth strike falsehood down to ground.

He who commits wrong or condones the same,
May your contempt singe like a reed in flame.

– Rabindranath Thakur

On #WorldHealthDay2022 day, I think someone ought to make their voices heard by the public and government on the topic of inequality in #cancercare where I have metastatic #NET in thyroid which grew back after thyroidectomy abutting the trachea,  obstruction in airflow in lungs, countless brain mets, bilateral kidney cysts doctors are demanding colonoscopy and endoscopy to find why pancreas is not involved. The dumbos yell " I have no time for you and #NET " other dimwit never pick up another can't control seizures as mets increase. The queen sits and enjoy " ha! Ha! I am a doctor cum dictator with the ability to predict death ,I told media she'll die in her 40s 

"The results demonstrated that brain metastasis occurs in the vascular border zone regions and the gray and white matter junction more frequently than previously recognized, and also supported the notion that metastatic emboli tend to lodge in an area of sudden reduction of vascular caliber (gray/white matter junction) and in the area most distal vascular field (border zone)."


Haemangioblastomas are tumours of vascular origin and occur both sporadically and in patients with von Hippel Lindau (vHL). They are WHO grade I tumours that can occur in the central nervous system or elsewhere in the body, including kidneys, liver, and pancreas.Haemangioblastoma is actually a capillary haemangioma and, despite the name with the affix of "blastoma", 


Looking at tumour cells in the cerebral spinal fluid under high-resolution MRI scans are all that is necessary for an accurate diagnosis. A biopsy isn't required for diagnosis as it may cause meningitis and blood loss thereby cell spillage.


Demand for treatment

Biopsy of hemangioblastoma

Endoscopy

Colonoscopy.

A lamb ready for slaughter, doctor and slaughter is synonymous


Three blind mice, three blind mice

See how they run, see how they run

They all ran after the farmer's wife

Who cut off their tails with a carving knife

Did you ever see such a thing in your life

As three blind mice?


#NETcancer

Sunday, April 3, 2022

Blew all worries

 




I am not happy

No satisfaction, no joy

Contentment, fulfilment

People feel happier with compliment

Meaningful compliments for everyone in your life.  

Take you an extra mile.

Life ensured to hit in extra special way

In creative ways to show that it someone else's day


With care and nuances forever I carried on through life

Blew all worries in the warm cloud of smoke from my cup of tea.

Couldn't get weak at the knee

Do you agree?

Not wasting time on ruined life

I couldn't take my life

Despite discord or conflict; involve in contention or strife


Grieving pain, suffering, poverty, bereavement is futile

Where a long festive celebration is life

Altogether precisely cosy, opinions have failed to know the value and make it utile

Celebrating ruination blowing worries I walked extra mile

Whatever came my way was my fate

Despatch of destiny was never late

Happiness, grief and joy

Where I get a bouquet of happiness

I sought that path ,yes!!!

I will forever carry on blowing all worries

Till the end


Friday, March 25, 2022

Mary had a little lamb

 A hidden valley beside a gushing stream

That's where you can find my dream


Some are living their lives

But not really alive


Life is funny


What some people are gonna do f'r money.

Life inspires spirits with bold and noble thoughts

Shouldn't do what we ought not


Live here

Die here

Even if your despair

Don't disappear

Little by little you think in the middle

But you're never sure why you're here.


Left to be slaughtered lamb. 

Where mum sings " Mary had a lamb"

 Ought'n suffer more than have to

I was feelin' kinda lonesome and blue,

Calamity, horror, the beating of the wings of death.

But a smile is the crowning delight.


A smile makes a world end another begin

In the ripple of life 

Didn't discharge the duty of life


Started the journey on the open tangled road 

Not knowing where to stop with my load

I go because that's life

You stop your breath

Hugged by death


Shall be there until the end

My mum, my friend.

Wednesday, March 2, 2022

Golden doctors ,golden opportunity in life






It's glaringly obvious that the force of life is greater than death. But didn't life hit me violently worse than death?

 When I started writing,  I intended not just encouragement to oppose our current impressions, hoping to briefly pluck them out of persistent grip on the authority of the power of death. Pleasing all is impossible. Neither is everybody sweet and pleasing.

There are myriad challenges of having a malady. If you have the most unusual diseases known to humankind it becomes a fateful condition where you can't afford to be ignorant and continue being tired if you desire quality and extension of your life.


There will be an intense, somber, indefatigable strife where you don't have to worry only about healing because recovery is a tough process that takes time and patience leaving scars behind but you have to bother about financial demands to get a proper diagnosis and the desirable treatment regime.

Few diseases of the present have little in common with the diseases of the past because of their rarity but like an owl, you have to pore over abstruse medical documents and make it your pastime with a great penchant for general science with an interest in medicine.

When you are bombarded with heavy-duty medical words of a mysterious sickness as your diagnosis by medical men who claim to possess full knowledge of those things don't become trifle too dreamy and treat their words as Gospels.

I think of the overwhelming despair of the medical practitioner roaring for my craniotomy.

You come and sit in my chair; let me go sit in your chair.”


Their impossibly bumptious opinionated ego deflates showing all the indications of superiority. He has earned his degree through remarkably well medical training going through the rigors of medical school, how can an inferior creature ask him questions? A face reader once met with me in Delhi and said " you are full of questions and when death will come to take you, you will ask who are you?". True, I have abibliophobia and my mind seems to be bursting with questions.

I had an attack of tetany at 2 am and was put in emergency. Tetany is a disorder characterized by enhanced neuromuscular excitability that is caused by various metabolic abnormalities. Irrespective of the causative factors, the variable clinical presentation can range from asymptomatic patients to life-threatening emergencies.

Tetany usually is caused by low calcium levels, and hypoparathyroidism that causes low calcium levels also causes long term tetany.

It was critically important for the thyroid surgeon Dr. Saikat Gupta to employ strategies for minimizing and preventing hypoparathyroidism (or Hypopara for short), including carrying out the most appropriate extent of thyroidectomy for a specific patient.

I met in the palace of Dr Ambarish Mithal at Vasant Kunj and paid hefty fee. Treatment with vitamin D analogues and calcium supplements is not ideal and can lead to long term renal problems. Calcium levels fluctuate but home calcium testers are not available so monitoring this condition can be challenging. Until 2015, Hypopara was the only endocrine condition without its own replacement hormone. Injectable parathyroid hormone is now licensed for use in the treatment of hypopara in the USA but is not yet available elsewhere. Putting his attention to only hypopara he neglected diabetes mellitus, fractionated metaepiniphrine tests


As you can see proper test wasn't done. Go to Ambarish Mithal if you have diabetes only, but shhh! Don't tell much because he blocked me due to my queries.

What did you say? 


"Aha—you observant rascal. You are bonkers...are you crazy?" I got severe attacks of seizures while JEE and I still have penchant for acquiring knowledge. I dissected animals hence am aware of anatomy



 No, I am not. I keep myself well-informed so that I don't fall into the wrong hands. I love learning and gaining knowledge which brought in understanding, comprehension, a better grasp of my bizarre diseases, not to be afraid of death or lead an unlived life like a zombie.  Because in the end we only regret the chances we didn't take. Live life to the fullest and try bringing color to my life. I feel alive, not just breathing. 


The oddity of my life is I have to choose doctors. AIIMS pheo, para research confirmed my oncogene vHL mutation. Yet doctors aplenty believe in biology, stage, grade not genes.


Neuroendocrine tumors (NETs) are highly vascularized, but the process of proliferation and maturation of vascular structures during tumor development and progression has remained unknown.


A biopsy is the gold standard to confirm the diagnosis but does not differentiate between pheochromocytomas and paragangliomas. Since most paragangliomas are vascular, a preoperative biopsy is not common.


Fortune favoured and a versatile doctor who  identified my SSTR in brain.


 https://www.blkmaxhospital.com/doctor/s-hukku


which is the cause of extreme diarrhea whereas Fortis Memorial hospital remarked eating too much is causing diarrhea. Whereas, I lost over 20 kgs. I eat only protein, egg white, no rice/ carbs, fat, lactose-free milk.


I was referred to

https://www.blkmaxhospital.com/doctor/sajjan-rajpurohit



and Dr. Vibha

 We both aspire a life with mountain of books, trees bearing dark chocolate, and, ripples in the river of coffee. This life is getting kinda boring. I wish to swap it with the other.


Dr Sajjan immediately wrote chemotherapy and octreotide but  after 3 chemotherapy my liver transplant surgeon said to go for PRRT. Because my brain tumors  oozing somatostatin especially the site of craniotomy said  https://www.rgcirc.org/doctor-profile/dr-partha-s-choudhury/


Sometimes doctors purposely put you to death, yell at you that she's been helping for 20 years whereas I know her since 2007 and help came only at 2015. Never go to https://www.fmri.in/doctors-profile/ishita-b-sen and team who knew but said I'll die in my 40s to media because I was not offered proper treatment. Never go to such doctors and be a scapegoat. Mum made patishapta and gajar halwa for all of them.

I think I never dropped my active brain somewhere but don't worry I will come to the conclusion never go to Ishita and Vineet Pant also Sugandha if you or anyone you love develop symptoms if you want to lengthen your life. Better choose Sajjan Rajpurohit a great doc. "Because you didn't use contrast and didn't say anything I got net met. For your information, my liver transplant was done today in 2008. Does it make 20 years? You have forgotten math. Now I have met all over because of the ominous moment I called you Didi and depending on your judgment. Ma too thought good and made patisapta but you insulted her. You will face your karma"--- the best conversation with an ailing patient because I questioned her medical negligence.



Always keep yourself informed. There are doctors sitting there to take your life for the sake of money. I told my neurologist knowledge is not your property and he readily agreed.

Medanta Medicity, Fortis Memorial Research Institute, Cancer Cross , there are plenty of hospitals and doctors who misdiagnose, maltreat, block you without doing proper treatment. You will find

"willing to keep this oath and my profession- to reckon him who taught me this art to butter my bread, and not to share my knowledge with any sufferer never relieve his necessities unless the required sum determined by me is wholly paid. I will never look upon every patient of mine on the same footing as my brothers if only they are rich beyond measure and compensate for my toil. I will never remember to treat rare diseases with fatalities and cancerous growth because the sick human may affect the person's family's economic stability"

As the mutant oath like mutant viruses or mutated oncogene.

The Italian poet Dante Aligheri, in “The Inferno,” extrapolated from traditional Catholic beliefs and placed those who had committed the sin of suicide on the seventh level of hell, where they exist in the form of trees that painfully bleed when cut or pruned.

Don't feel like a tree cut or pruned 

Even if the percentage of survival is low doctors wave away as complex cancer,  not common cancer, if you have to do common cancer why did you waste a medical seat which could have produced another Dr. Soin?

Hail ! 

Drs Subhash Gupta, Vineet Govind Gupta, Ishita. B .Sen, Pankaj Dougal, Sugandha Dureja, Madhavi Chawla, Ullas Batra, Rakesh Jalali, Vangipuram, I am happy for your chicken's heart doing only a dime a dozen.

Those thinking of their degrees and knowledge if you don't venture into novel job how will you learn?

Not leaving a patient to die, not at the cost of a life improvement the quality of life and then learn to win. Do you wannabe in the 7th Hell?


Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The European Organisation for Rare Diseases was established the day in 2008 to raise awareness for unknown or overlooked illnesses.


Do you feel a rare genetic cancer patient needs love, support laughter, care of aching with isolation, loneliness, and solitude we have one life


Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The European Organisation for Rare Diseases was established the day in 2008 to raise awareness for unknown or overlooked illnesses. During my first experience till now I always spoke with authority because it was my body he would work upon and if he doesn't do a very careful job with his scalpel with full knowledge of what he was about to do then my fragile life bird would have flown away. I had the full right to know what was to be done to me.



After completing their medical degrees do they plunge into the world of unique diseases, keep themselves updated, keep track of all those maladies?

How could USA invent cancer drug? Because of dedication to save lives. I get mesmerized in Dr. Kaelin’s research is cause for optimism, not only for the 200,000 people suffering from VHL (von Hippel-Lindau disease) around the world, but also for those facing other cancer diagnoses.“When you are studying about von Hippel-Lindau disease, you are not just studying about [the] …. disease … you are also now touching other diseases as well, where we can use the VHL gene to understand what is happening.” As such, the understanding of HIF involvement in tumorigenesis provides hope for the 40% of the world’s population who will be diagnosed with cancer at some point in their lives.


Do you feel a rare genetic cancer patient needs love, support gaiety, care because of aching with isolation, loneliness, and solitude we have one life I talk a lot because do all the honest talking and blessings to all  before the day of silence.

There's really a good chance of getting old with silver hairs if my venerable disease gets an opportunity for good treatment, my potentials are realized and my battle with the selfish self-centered people ends. My life will be perfect and trouble-free. Every day I look at myself in the mirror I see a  zebra.