Wednesday, April 13, 2022

Life isn't a party where healers turn slaughter denying PRRT

 Every part of your body – your skin, 

bones, hair, blood, muscles, organs – they’re all made out of cells, and 

inside each of the tens of trillions of cells that make up your body is an 

identical copy of your DNA, a molecule that basically lays out the blueprint 

for building you.


When you get injured, the way your body repairs that injury is that the healthy cells around it divide, making copies of themselves to replace the damaged cells. This is also how we grow and make things like hair and blood. 

Every cell in your body has this capacity to copy itself. But every time a cell divides, there’s a small chance that it won’t go exactly as planned. What can result, then, is an unplanned cluster of cells somewhere in your body. We call this cluster a tumour.


So, if you were to imagine that any cell that’s capable of cell division all of a sudden acquired the ability to divide without 

control, meaning one cell becomes two, two become four, four become 

eight, eight become sixteen, then that lack of control of cell division 

would allow that individual cell to become a lump, and that lump is 

basically what a tumour is.”

So, “tumour” can be a scary word, but many tumours really aren’t such a big 

deal.

Abnormally-growing cells that might not 

have acquired the biological characteristics that would allow them to And so benign – meaning non-cancerous – tumours can sometimes be uncomfortable, can sometimes even make you sick and need to be dealt with, 

but they are called “benign” because they basically stay put and mind their 

own business. They grow in one place and only one place, and when they’re 

removed or destroyed, that’s the end of it. 

Sometimes, though, we develop a tumour that has other ideas. This tumour has 

developed a glitch in its DNA that inspires it to not just copy itself uncontrollably, but to cause other cells it comes in contact with to do the same, causing chain reactions of uncontrolled cell growth to spread wider and wider around your body. This is called cancer, and as we all know it is a big deal because it can often mean that these out-of-control clusters of 

dividing cells can grow in such a way that they prevent your organs from 

functioning properly. Tumours develop because cells, the cell of origin, tend to divide out of control, and they become cancer when they develop the potential to spread to other places.

Cancer happens to have started in a kind of cell called a neuroendocrine 

cell. Everyone has these all over their body. They’re mainly in places like 


  • gastrointestinal tract, 

  • the lungs and airways, and the various glands 

all around your body. These cells make up a system that control a bunch of 

important bodily functions – things like heart rate, blood pressure, air 

flow, digestion, and lots of other things. They do this by being the meeting 

points between two different kinds of signalling systems that keep the body 

running.

Some of the cells in your body communicate with each other by 

sending and receiving chemical signals, such as hormones, which are produced

by the endocrine system. 

Other cells though, such as the cells in your brain, they run on an entirely different system of electrical signals – sending 

sparks of electricity between the different neurons. 

So, there are cells in the body that are neurons, they’re nerves, and other cells in the body that are endocrine cells that form 

parts of glands, and these are all essential for normal function. So 

those cells are all over our body, and you’ve got millions and millions of these kinds of cells that do regulatory functions of hormonal balancing and control, nervous function, sensory, and motor, and 

keeping everything together so that we are functioning normally.

And in many of these places, like in the glands that make those hormones, 

there’s a need for a group of cells that can bridge the gap between those two 

kinds of signalling systems – receiving an electrical message from the nerves 

and turning it into a chemical message. These intermediaries are your 

neuroendocrine cells. It’s a translator, so it translates a neurologic – which is 

really an electrical – communication to a hormonal – which is a molecular – communication, where a molecule is released by a cell and goes and attaches to a different cell and in so doing sends a message to that cell to do something.”

Just like any other kind of cell in your body, these neuroendocrine cells, they need to divide and replace themselves periodically, and when they do there is a chance that a mistake might be made that will cause them to form a malignant tumour. And because neuroendocrine cells are everywhere in your body, neuroendocrine tumours can form just about everywhere also. About 25% of primary neuroendocrine tumours begin in the lung. About 54% begin somewhere in the gastrointestinal tract – 12% in the small intestine, 9% in the pancreas, and 29% elsewhere, including the stomach lining, appendix, and rectum. Other sites or primaries of unknown origin, they account for the remaining 21% of primaries.


One confusing term you may have heard as you began to learn about NETs is 

“carcinoid”. 

What does that mean? This is a term that dates back more than 100 years and refers to the fact that most NETs are really very different from other kinds of cancer. The main difference is that some NETs grow very, very slowly. So slowly, in fact, that when they were originally discovered, 

it was thought that they might not actually be cancer at all, so this new term – carcinoid, which literally means “cancer-like” – was invented to 

describe them.


It’s a problematic term, though, because as our understanding of NETs has 

increased, we’ve come to realize that they do behave like other cancers –

they just do it at a different pace. 


Neuroendocrine tumours, in general, you often hear the description as being ‘cancers in slow motion, because even 

neuroendocrine tumours that have spread to other parts of the body, such 

as the liver, can be indolent and not grow for months or even years. 

And so, this is in contrast to many other types of cancers that have 

spread to the liver where week by week, month by month, there’s clear, 

gradual growth.”

And partially because of this “carcinoid” label, physicians until very recently tended to misunderstand just how dangerous NETs actually are. 

Neuroendocrine tumours, even as recently as ten to fifteen years ago, were actually all classified as being benign. 


Pathologists for a long, long time called these benign, and thus so did doctors taking care of these patients, and so then patients had this belief that these cancers would never come back. And we now know that these in fact are cancers, and they can grow and spread, and therefore 

they need to be treated as such. They need to be treated like cancers, 

and therefore patients need to have appropriate surgeries and 

treatments, et cetera.” 

Neuroendocrine tumors, in general, are all 

malignant. They all have malignant potential. The number usually 

quoted is 60-90%. I think of them all as having the potential for 

malignancy if you leave them alone long enough.”

What does that word mean, exactly – “malignancy”? Well, your cancer is 

named for its “primary” site – the place where the very first tumor appeared, 

but that location is just the beginning. Like all cancers, NETs have the 

potential to spread elsewhere. That tendency to spread is called 

“malignancy”, and the new tumors that form are called “metastases” or 

“metastatic tumors”. 

The first place that most NETs spread it into the lymph nodes that are 

nearest to the primary site. Lymph nodes are a kind of gland that work as 

filters for harmful substances in the body. They carry oxygen and other 

nutrients to cells and carry away waste products that flow out of the cells. 

It’s almost like the plumbing system in your house. 

So a lymph node is basically a docking station of immune surveillance, as fluid tracks back to the circulation from really any end organ. So as blood pumps into any organ, so the fluid pressures 

basically push some of the water out into this space – the lymphatics –

and then that will drain back through these little docking stations where we find these various immune cells.

Multiple ill-defined calcified & non-calcified nodules are seen scattered in both lungs, predominantly in

upper lobes, the largest measuring 2x1.3 cm in the right upper lobe.

A thin-walled cyst in the left upper lobe. 

Few calcified sub cm mediastinal lymph nodes. CT study reveals multiple calcified nodular lesions in both lungs, more prominent in the upper lobes,

suggestive of old granulomatous lesions. 



My lymph nodes:


A few small calcified mediastinal lymph nodes are also noted.

Compared to the last PET-CT of 07/02/2022, there is no significant interval change


Life is not a party after several misdiagnoses, Spleen is normal in size. Multiple small calcific nodular foci are noted in the spleen.

Both adrenals appear normal. ( functionally active producing fight or flight hormone report given)

The right kidney is normal in position and size. Few small subcentimeter sized cysts are noted in the right kidney, the largest in its

upper pole measuring 0.9 x 0.8cm. The largest cyst in the upper pole of the right kidney shows relatively higher attenuation in noncontrast sections, suggestive of a complex cyst (Bosniak type 2). The sparkling sky of Ga 68 Dotanoc glows under the vault of the brain


Somatostatin (SST) and somatostatin receptors (SSTRs) finding them in my brain play an important role in diagnosis in the brain. Gastrointestinal (GI) system SST is produced in various organs and cells, and the inhibitory function of somatostatin-containing cells is involved in a range of physiological functions and pathological modifications. The GI system is the largest endocrine organ for digestion and absorption, SST-endocrine cells and neurons in the GI system are a critical effecter to maintain homeostasis via SSTRs 1-5 and co-receptors, while SST-SSTRs are involved in chemo-sensory, mucus, and hormone secretion, motility, inflammation response, itch, and pain via the autocrine, paracrine(Paracrine signalling is a form of cell signalling, a type of cellular communication in which a cell produces a signal to induce changes in nearby cells, altering the behaviour of those cells.) endocrine, and exoendocrine pathways. It is also a power inhibitor for tumour cell proliferation, severe inflammation, and post-operation complications, and is a first-line anti-cancer drug in clinical practice. This focuses on the current function of producing SST endocrine cells and local neurons SST-SSTRs in the GI system, discusses new development prognostic markers, phosphate-specific antibodies, and molecular imaging emerging in diagnostics and therapy, and summarizes the mechanism of the SST family in basic research and clinical practice. Understanding of endocrines and neuroendocrines in SST-SSTRs in GI will provide an insight into advanced medicine in basic and clinical research.

Right side and submandibular highlighted my thyroid lesion – still under a watch and wait regime due to poverty and a surgery every year.


The thyroid gland is not visualised (post thyroidectomy). Coalescing enhancing nodular areas are noted in the location of

right lobe of thyroid, abutting the right lateral and anterior wall of trachea. The confluent lesion in this location measures

2.7 x 2.3 x 1.5cm in size. A smaller enhancing area is noted in the location of left lobe of thyroid, abutting the tracheal wall,

measuring 1.0 x 0.7 x 0.6cm in size

Thyroid.

Seems to be the unknown source behind the cancer.

Sneaky Net Scan now I will win

Amines in food are chemicals that occur naturally, caused by bacteria that breaks 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.


Amines are harmless for most people, however, when consumed in excess or by people sensitive to amines, they can cause a range of symptoms. Amines can cause an increase in cardiac output and constriction of blood vessels in the head which can cause migraines. 


A person may think they have an intolerance to a food but the next time they try it, they don’t experience the same problem so they assume that food is safe. What they don’t realise is the foods they consumed prior were low in amines so their body tolerated the food with high amine levels. 


People often look for one single food as the cause of their symptoms rather than the range of foods they ate within a two day period. Amine levels can be high in foods that people consider healthy and safe like fruit and vegetables so they don’t consider them as a potential source of amines.


For many years, conflicting data made it difficult to make conclusive links between children’s behaviour and their diet. In the late 1990s, 423 children who had presented to a NSW Hospital Allergy Unit were sent a questionnaire about their child’s symptoms and diet modifications. Of the 77% who started an elimination diet, 91% reported improved symptoms. The most common chemicals respondents reacted to were 

  • amines, 

  • salicylates, 

  • colours, 

  • glutamates and preservatives respectively. 

Parents reported significant improvements in behaviour when these were removed from their child’s diet.


Amines in food have been linked to migraines. Around 60%-80% of the immune system is in the gut. When a sensitive person eats a food or chemical, the immune system releases mediators such as cytokines, leukotrienes, or prostaglandins they know which cause a host of chronic inflammatory conditions, including migraines.

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.

Another chronic inflammatory condition, IBS, has been linked to food chemical sensitivity. IBS symptoms include diarrhoea, bloating, abdominal pain and constipation. 


man holding his stomach because of IBS caused by amine sensitivity


The bacteria in the large bowel ferments undigested nutrients from food but IBS symptoms can occur when food chemicals are present. Management of IBS has focused on fermentable carbohydrates, a group of dietary sugars


For many eczema sufferers, diet can contribute to their painful skin condition but it’s difficult to know which foods cause the problem. 


With eczema, foods that aren’t usually a problem can make an eczema flare-up worse. It seems the immune system has already been triggered during an eczema attack and so many foods can cause the condition to worsen. The reaction time to eczematous food can be multiple days making it difficult to isolate problematic foods. Most times, once the eczema is under control, people can reintroduce the foods with no problems.  


Dopamine

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.


Serotonin

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 diarrhoea. 


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 researching 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. Research is continuing.


Amines Link to Depression and Schizophrenia

There are five biogenic amine neurotransmitters (brain chemicals) - dopamine, norepinephrine (noradrenaline), epinephrine (adrenaline), histamine and serotonin. 


When an imbalance of these neurotransmitters occurs such as a lack of dopamine and serotonin, nerve impulses or messages aren’t effectively transmitted in the brain.


Histamine and Amines

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. 


woman with histamine allergies blowing her nose


Are Amines and Histamines the same thing?

Histamine is one type of biogenic amine that occurs in many foods. When we consume food that contains histamine, our gut uses its special enzymes to destroy the histamine before it’s absorbed into the bloodstream. The enzyme, Diamine Oxidase (DAO), is released into the gastrointestinal tract as the first line of defence against histamine exposure.  


Histamine intolerance occurs when there aren’t enough of these enzymes in the body. The average human can cope with 50 to 100 mg/kg but people with histamine intolerance react to much lower levels. The reactions can vary from anaphylaxis to mild localised allergic reactions. Around 80% of people with histamine intolerances are women. Estrogen and histamine can increase histamine levels and vice versa. 


Histamine sensitivity is difficult to diagnose because a food can cause symptoms one day and no symptoms another. Common symptoms include heachaches, 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. 


Symptoms of scombroid poisoning include rash, palpitations, headache, dizziness, sweating, and burning of the mouth and throat. Gastrointestinal symptoms can include stomach cramps, nausea, vomiting and diarrhoea. Respiratory distress is also possible. Symptoms begin within 10 to 90 minutes after eating the fish.

PRRT




While PRRT has been used for more than 20 years to treat patients with inoperable or metastatic somatostatin receptor–positive tumors, knowledge of long-term outcomes has been limited. A number of clinical studies have demonstrated PRRT’s efficacy, and the overall response rate (including complete response, partial response, minor response, and stable disease) is about 70% to 80% for the most commonly used radiopharmaceuticals: yttrium-90 (90Y)-DOTATOC (best suited for treating larger tumors) and lutetium Lu-177 dotatate (preferred for smaller tumors). For patients who respond to PRRT, the prognosis is generally favorable, with a median time to disease progression of 3 to 4 years.

A 12-year retrospective clinical study of patients who received peptide receptor radionuclide therapy (PRRT) for malignant neuroendocrine tumors demonstrated the long-term effectiveness of this treatment, which also allows patients to maintain a high quality of life.

Which I  am being purposely denied.

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