When life is sheer willpower hanging by two or three threads, I tell Mumof the wondrous things in my rare and strange life and we together have journeys and magnificent adventures mostly making rounds of hospitals, I try making life fun and exciting not to forget the whole thing but to remove the painful memories
von Hippel-Lindau or VHL is a rare syndrome. VHL may occur in up to 10 organs of the body also there is a possibility of neuroendocrine cancer.VHL is a genetic form of cancer. VHL patients battle a series of tumors throughout their lives. Lack of timely intervention can often lead to morbidity and mortality.
All people with VHL disease should be carefully followed by a physician or medical team familiar with the disorder.
Hence mutations in an oncogene is a recurring syndrome concerning several organs. My mutation was confirmed by the AIIMS Endocrine department. Deletion/duplication analysis involves looking for sections of the DNA (or pages of the book) that are completely missing or duplicated in either one or both copies of a particular gene. Having a section of the gene missing or duplicated can disrupt how it works.
What are neuroendocrine tumours (NETs)?
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. You might also hear these tumours called neuroendocrine neoplasms (NENs) or neuroendocrine carcinomas (NECs).
There are a number of different types of NETs. The type you have depends on the type of cell that the cancer started in.
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.
Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells. Neuroendocrine tumors are rare and can occur anywhere in the body.
The neuroendocrine system
The neuroendocrine system is made up of nerves and gland cells. It makes hormones and releases them into the bloodstream.
Neuro means nerve and endocrine refers to the cells of the endocrine system. The endocrine system is a network of glands and organs in the body that make hormones. It is also called the hormone system.
There are neuroendocrine cells in most organs of the body, including the:
food pipe (oesophagus)
stomach
lungs
small and large bowel
pancreas
liver
Neuroendocrine tumors are cancers that begin in specialized cells called neuroendocrine cells. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells.
Neuroendocrine tumors are rare and can occur anywhere in the body. Most neuroendocrine tumors occur in the lungs, appendix, small intestine, rectum and pancreas.
What neuroendocrine cells do
Neuroendocrine cells have different functions depending on where they are in the body. They control how our bodies work. This includes our growth and development, how we respond to changes such as stress, and many other things.
For example, neuroendocrine cells of the lung make hormones that control the flow of air and blood in the lungs. And neuroendocrine cells of the gut (digestive system) make hormones to control:
The production of digestive juices
The muscles that move food through the bowel
Where NETs start
NETs can start in different parts of the body. Like all cancers, NETs are named after the place they start growing. For example, a NET that starts in the lung is called a lung NET. This is the primary cancer. If the cancer spreads to another part of the body, it’s called secondary cancer.
Around 5 out of every 10 NETs (50%) start in the digestive system. This is also called the gastrointestinal (GI) system. It includes the:
stomach
small and large bowel
pancreas
back passage (rectum)
Around 2 out of every 10 NETs (20%) start in the lung. NETs can also start in other places such as the:
food pipe (oesophagus)
appendix
skin
prostate
womb
adrenal, parathyroid and pituitary glands
Neuroendocrine neoplasms (NENs) are rare malignancies of the aerodigestive, genitourinary and integumentary systems. Their histologies vary from well-to-moderately differentiated neuroendocrine tumors (NETs) to poorly differentiated neuroendocrine carcinomas (NECs) and their natural history has been described in several publications . Most studies are limited due to the small number of cases, inconsistent follow-up or retrospective nature but it is clear, however, that the incidence of NENs is increasing and that, at least for certain subtypes, survival might be improving.
NENs show a spectrum of behaviors and this makes their treatment challenging. Some exhibit an indolent, slow growth pattern, while others parallel the more aggressive, rapidly spreading tumors such as small cell lung cancer (SCLC); in between there are neoplasms of intermediate malignant potential. Research so far has identified stage, site of origin and differentiation, as well as proliferative indices (Ki-67, mitotic count) as important prognostic factors and multiple scores have been published, trying to predict survival in metastatic disease or recurrence after curative surgery. In general, well- differentiated tumors progress slowly and surveillance may be the best approach in some cases, whereas poorly differentiated neoplasms require urgent aggressive chemotherapy and are associated with markedly shorter survival. Tumors of small bowel origin tend to have a better prognosis compared to NENs originating in the pancreas. The effect of other factors such as age, race , resectability , performance status or even marital status has similarly been examined in several publications. Most medical decisions nowadays consider tumor of origin, staging, but also tumor differentiation and mitotic indices (values that have formed the basis of the current grading system ).
Recently, significant progress has been observed not only in our understanding of the biology and genetics of NET but also in the diagnosis and treatment.
Besides, newer classification and staging systems have been adapted and guidelines published to help to establish a more standardised approach.
Although some series report slightly higher incidence in men compared to women, there appears no significant difference in terms of gender. The prevalence of the dis-
ease is however estimated to be much higher and ranks only second after colorectal cancers among gastrointestinal (GI) tumours . Although NETs may occur at any age, it is more common after the age of 50 . NETs may be associated with familial genetic neuroendocrine tumour syndromes such as multiple endocrine neoplasia (MEN) syndromes (MEN-1 and MEN-2), neurofibromatosis type 1, von Hippel-Lindau (VHL) disease, tuberous sclerosis and Carney complex.
In patients with these syndromes, the age of diagnosis is 15–20 years lower than those with sporadic NETs.
Usually the slow-growing NET tumours. They can arise from many organs but commonly from GI tract and pancreas, lung, thymus and other endocrine organs.
NETs may synthesise and secrete peptides and/or amines. These secreted peptides/amines can be used as tumour markers, and they may lead to clinical symptoms.
NETs have some common histopathologic characteristics. They show similar immune reactivity to pan-neuroendocrine markers, chromogranin A and synaptophysin. Neuron-specific enolase (NSE), CD56 and CD57 are less specific markers; they can be used to identify poorly differentiated NETs. Immunohistochemical assessment of specific hormone expression is not routine in pathological evaluation, and positive immune reaction for hormone expression in the tumour tissue does not indicate that the tumour is functional. NETs usually express somatostatin receptors; therefore, somatostatin expression can be used both diagnostically and therapeutically. Somatostatin receptor imaging ( 111 In-DTPA-octreotide or preferably 68 Ga-DOTATATE) can be used for initial staging, follow-up and selecting patients for peptide receptor radionuclide therapy . The role of newer NET tracers warrants further validation for routine clinical practice. Endoscopic evaluation of the patients with esophagogastroduodenoscopy, colonoscopy, double- balloon enteroscopy or capsule endoscopy is critical according to the localization of the primary tumour and also in patients with primary unknown metastatic neuroendocrine tumour or carcinoma.
Neuroendocrine tumors (NETs) are a heterogeneous group of tumors secreting various bioamines and peptides arising from neuroendocrine cells in the endocrine and central nervous systems. NETs are responsible for approximately 0.5 % of all cancers.
The incidence and prevalence of NETs have increased about fourfold for the last 30 years because of improvement in the diagnostic techniques. PNETs are more aggressive tumors compared with NETs originating in the other sites. Also, most PNETs are malignant and tend to be in an advanced stage at the time of diagnosis. Gastrointestinal tract is the most common location and is responsible for two-thirds of NETs. Small bowel is the most common primary site of GEP-NETs in the developed countries. PNETs are divided into nonfunctional and functional tumors which secrete hormones and peptides. In association with hormone and peptide secretion, functional endocrine tumors may be symptomatic. The Bronchopulmonary system is the second most common location of NETs. These tumors consist of one-third of all NETs. Typical and atypical carcinoids of the lung tend to slowly grow. Most nonfunctional lung carcinoids have been incidentally diagnosed. The prognosis of NETs is associated with their location, functional status, differentiation, and initial stages. In the advanced stage, the prognosis is poor. However, the overall survival of well-differentiated and localized NETs is longer. The best survival rates are observed in patients with NETs arising in the rectum and appendix. The 5-year survival rates of these tumors are excellent with over 90 %.
Cancerous or non cancerous
There is some debate among doctors about how NETs should be grouped and what they should be called. NETs develop in different parts of the body and behave in different ways. For example, some NETs grow slowly while others are faster.
All NETs are malignant (a cancer) by definition. Some NETs are diagnosed early and you might be able to have treatment to cure it.
More recently doctors have been calling them neuroendocrine neoplasms (NENs). This is an umbrella term for this group of disorders. Then depending on how slow or fast growing the cells are they are called either neuroendocrine tumours (NETs) or neuroendocrine carcinomas (NECs).
NETs are usually slower growing and the cell changes are called well-differentiated. NECs tend to be faster growing and the cell changes are called poorly-differentiated.
Pancreatic cysts may be found in a large number of people with VHL, with wide variation among families. About 75% of people with VHL develop pancreatic cysts. Many cysts, even very large ones, may be present without causing symptoms, in which case no treatment is required. In some cases, enlarged cysts may press against surrounding organs, such as the stomach, and cause discomfort. Surgical or endoscopic drainage of a large cyst may provide relief. I was diagnosed with multiple tiny cysts in the head and body of the pancreas in 2006.
Size is the main criteria for determining approximate risk level for pNETs. Tumors that are greater than, or equal to, 3 cm should be considered high risk and be evaluated for surgery. pNETs with a diameter between 1.2-1.5 cm and 3 cm should be considered moderate risk and be monitored closely. Those smaller than 1.2-1.5 cm are considered low risk. The location of the tumor within the pancreas should also be taken into consideration, as tumors in the head of the pancreas are typically removed when they are smaller to allow for less extensive surgeries. Stereotactic surgery is also an option.
My symptoms:
Difficulty speaking or loss of voice
voice that is hoarse or breathy
trouble drinking liquids
loss of the gag reflex
pain in the ear
unusual heart rate
abnormal blood pressure
decreased production of stomach acid/ exocrine function
nausea or vomiting
abdominal bloating or pain
Also I get acute diarrhea and lost 16 kilos
My wheezyness feels like I am hearing my own breathing
After a meal, I have eaten
I leap to the bathroom
The poop smells like perfume
Potbelly
Became flat belly
As I get weak
Feel dizzy and sick
It came to my mind PET Scans done since 2017 were without contrast and past few scans were FDG avid at the apices with breathlessness.
Pancreatic cysts may be found in a large number of people with VHL, with wide variation among families. About 75% of people with VHL develop pancreatic cysts. Many cysts, even very large ones, may be present without causing symptoms, in which case no treatment is required. In some cases, enlarged cysts may press against surrounding organs, such as the stomach, and cause discomfort. Surgical or endoscopic drainage of a large cyst may provide relief.Size is the main criteria for determining approximate risk level for pNETs. Tumors that are greater than, or equal to, 3 cm should be considered high risk and be evaluated for surgery. pNETs with a diameter between 1.2-1.5 cm and 3 cm should be considered moderate risk and be monitored closely. Those smaller than 1.2-1.5 cm are considered low risk. The location of the tumor within the pancreas should also be taken into consideration, as tumors in the head of the pancreas are typically removed when they are smaller to allow for less extensive
surgeries.You could have done the Ga 68 dotanoc earlier.
"Please ask your gastroenterologist but it makes intuitive sense..especially since your meningeal tumours also express somatostatin receptors" said the doctor who avoided contrast while doing PET CT, after over 8 months of acute diarrhoea. The
My medical oncologist did the right inference.
I just now came from the bathroom. Don't get sleep. Walking a little yesterday inside the hospital I have a terrible body ache. I can not eat everything and I don't recover from Covid.
Pity my countrymen don't understand but a Britisher is always there for me."My sadness is with your weak brother who has deserted you and your dear Mum. I am also sad that your uncle stole your inheritance and hasn't been imprisoned.
Your determination is an inspiration and my hope is that there is a turnaround in your fortunes soon."
Skin rash on the face, stomach, or legs after chemotherapy started.
WARNINGS AND PRECAUTIONS
Cholelithiasis and Complications of Cholelithiasis
SANDOSTATIN LAR DEPOT may inhibit gallbladder contractility and decreased bile secretion, which may
lead to gallbladder abnormalities or sludge. There have been postmarketing reports of cholelithiasis (gallstones)
resulting in complications, including cholecystitis, cholangitis, pancreatitis and requiring cholecystectomy in
patients taking SANDOSTATIN LAR DEPOT Patients should be monitored periodically. If complications of cholelithiasis are suspected, discontinue SANDOSTATIN LAR DEPOT and treat appropriately.
Hyperglycemia and Hypoglycemia,Octreotide alters the balance between the counter-regulatory hormones, insulin, glucagon, and growth hormone which may result in hypoglycemia or hyperglycemia. Blood glucose levels should be monitored when
SANDOSTATIN LAR DEPOT treatment is initiated, or when the dose is altered. Anti-diabetic treatment
should be adjusted accordingly.
Thyroid Function Abnormalities
Octreotide suppresses the secretion of thyroid-stimulating hormone (TSH), which may result in hypothyroidism.
Baseline and periodic assessment of thyroid function (TSH, total and/or free T4) is recommended during chronic
octreotide therapy [see Adverse Reactions (6)].
5.4 Cardiac Function Abnormalities
In both acromegalic and carcinoid syndrome patients, bradycardia, arrhythmias and conduction abnormalities
have been reported during octreotide therapy. Other electrocardiogram (ECG) changes were observed such as
QT prolongation, axis shifts, early repolarization, low voltage, R/S transition, early R wave progression, and
nonspecific ST-T wave changes. The relationship of these events to octreotide acetate is not established because
many of these patients have underlying cardiac disease. Dose adjustments in drugs such as beta-blockers that
have bradycardic effects may be necessary. In one acromegalic patient with severe congestive heart failure
In a known case of VHL syndrome; PET/CT scan findings reveal multiple DOTANOC avid
(somatostatin receptor expressing) dural based nodular and plaque-like lesions as
described.
No focal lesion with abnormal DOTANOC uptake is seen in the liver, spleen, pancreas, adrenals and kidneys.
Few specks of calcification noted in splenic parenchyma. Might indicate my MDR TB.
From Dr. Fauci.
“Chickenpox is a virus. Lots of people have had it, and probably don't think about it much once the initial illness has passed. But it stays in your body and lives there forever, and maybe when you're older, you have debilitatingly painful outbreaks of shingles. You don't just get over this virus in a few weeks, never to have another health effect. We know this because it's been around for years, and has been studied medically for years.
Herpes is also a virus. And once someone has it, it stays in your body and lives there forever, and anytime they get a little run down or stressed-out they're going to have an outbreak. Maybe every time you have a big event coming up (school pictures, job interview, big date) you're going to get a cold sore. For the rest of your life. You don't just get over it in a few weeks. We know this because it's been around for years, and has been studied medically for years.
HIV is a virus. It attacks the immune system and makes the carrier far more vulnerable to other illnesses. It has a list of symptoms and negative health impacts that goes on and on. It was decades before viable treatments were developed that allowed people to live with a reasonable quality of life. Once you have it, it lives in your body forever and there is no cure. Over time, that takes a toll on the body, putting people living with HIV at greater risk for health conditions such as cardiovascular disease, kidney disease, diabetes, bone disease, liver disease, cognitive disorders, and some types of cancer. We know this because it has been around for years, and had been studied medically for years.
Now with COVID-19, we have a novel virus that spreads rapidly and easily. The full spectrum of symptoms and health effects is only just beginning to be cataloged, much less understood.
So far the symptoms may include:
Fever
Fatigue
Coughing
Pneumonia
Chills/Trembling
Acute respiratory distress
Lung damage (potentially permanent)
Loss of taste (a neurological symptom)
Sore throat
Headaches
Difficulty breathing
Mental confusion
Diarrhea
Nausea or vomiting
Loss of appetite
Strokes have also been reported in some people who have COVID-19 (even in the relatively young)
Swollen eyes
Blood clots
Seizures
Liver damage
Kidney damage
Rash
COVID toes (weird, right?)
People testing positive for COVID-19 have been documented to be sick even after 60 days. Many people are sick for weeks, get better, and then experience a rapid and sudden flare up and get sick all over again. A man in Seattle was hospitalized for 62 days, and while well enough to be released, still has a long road of recovery ahead of him. Not to mention a medical bill.
Then there is MIS-C. Multisystem inflammatory syndrome in children is a condition where different body parts can become inflamed, including the heart, lungs, kidneys, brain, skin, eyes, or gastrointestinal organs. Children with MIS-C may have a fever and various symptoms, including abdominal pain, vomiting, diarrhea, neck pain, rash, bloodshot eyes, or feeling extra tired. While rare, it has caused deaths.
This disease has not been around for years. It has basically been 6-8 months. No one knows yet the long-term health effects, or how it may present itself years down the road for people who have been exposed. We literally *do not know* what we do not know.
For those in our society who suggest that people being cautious are cowards, for people who refuse to take even the simplest of precautions to protect themselves and those around them, I want to ask, without hyperbole and in all sincerity:
How dare you?
How dare you risk the lives of others so cavalierly. How dare you decide for others that they should welcome exposure as "getting it over with", when literally no one knows who will be the lucky "mild symptoms" case, and who may fall ill and die. Because while we know that some people are more susceptible to suffering a more serious case, we also know that 20 and 30-year-olds have died, marathon runners and fitness nuts have died, children and infants have died.
How dare you behave as though you know more than medical experts, when those same experts acknowledge that there is so much we don't yet know, but with what we DO know, are smart enough to be scared of how easily this is spread, and recommend baseline precautions such as:
Frequent hand-washing
Physical distancing
Reduced social/public contact or interaction
Mask wearing
Covering your cough or sneeze
Avoiding touching your face
Sanitizing frequently touched surfaces
The more things we can all do to mitigate our risk of exposure, the better off we all are, in my opinion. Not only does it flatten the curve and allow health care providers to maintain levels of service that aren't immediately and catastrophically overwhelmed; it also reduces unnecessary suffering and deaths, and buys time for the scientific community to study the virus in order to come to a more full understanding of the breadth of its impacts in both the short and long term.
I reject the notion that it's "just a virus" and we'll all get it eventually. What a careless, lazy, heartless stance.”
Last year, a realistic comment.
Hence, I believe Dr Randeep Gulerias words TB will be encoded in my genome and so will be Covid, I suppose.
A lost breadwinner, now who will bring a small bit of bread? Who had sworn, to keep me fine, affectionately said "There were many generous people who could do the duty, perform the responsibility"
"I can't care for you because I have a wife, I will look after you just a little later. After you die in the next life." And the wife is after my life.
When it comes to helping, everything boils down to money.
How long will the spontaneity of the givers last? I was compelled to approach court because I have the right to live even when my mother's meagre pension cannot afford it.
A neuroendocrine tumor is a part of vHL or other other genes. A 54-year-old actor gets neuroendocrine tumors and the nation gets stunned, staggers and cries for him. Waves of worry in every person. He was an entertainer, actor.
A 41-year-old woman who is battling with several cancers, especially metastatic neuroendocrine cancer, pulled herself up from the condition and is now back to the starting point again.
A guy says you are not newsworthy. Religion, gender, caste, creed, mental health, diversity, as well as pride and prejudice of all kinds are newsworthy.
When in poverty, you face medical embarrassments, the humiliation of asking for financial help, physical suffering which is always there money concerns for food, medicines and rent.
My brain tumours are the rarest ones from 1902-2013 only 132 cases have been reported globally. A fellow remarked after he saw the picture of the scan of my brain tumours.
" you have more tumours in the brain than people have lice in hair.''
Detecting and treating the condition of leptomeningeal hemangioblastoma without delay seems to help survival, though the number of patients analysed is small. The most common cause of death is respiratory failure due to pontomedullary or cervical cord compression.
After 2017 I also have a chronic ischemic brain. Cerebral ischemia or brain ischemia, and when there isn’t enough blood flow to the brain leading to limited oxygen supply it may lead to the death of brain tissue, or ischemic stroke.
The electrons can be made to strike a tungsten target within the head of the accelerator to create a beam of photons (or “X-rays”). These X-ray beams are then directed at the site of cancer. Photons have no charge or mass and can be regarded as small packets of energy. Photons deposit their energy along the entire path that they travel through the body. Therefore, a beam of X-rays irradiates not only the area of the tumour but also the healthy tissue that the beam encounters on its way towards the tumour and beyond the tumour. X-rays used for treating cancer usually do not stop within the body. X-rays travel right through you. On the other hand, proton beam therapy is delivered by larger, much more expensive accelerators called cyclotrons and synchrotrons.
A proton beam directed at a tumour travels in a straight trajectory towards its target, gives off most of its energy at a defined depth called the Bragg peak, and then stops. While X-rays often deposit more energy within the healthy tissues of the body than within the tumour.
Now I run to the loo
Holding my belly crouching like a kangaroo
At times I drool
Bumpety bump
I feel a lump
I don't jump
But call Mum
When I need to pee
I wonder how deftly she handles me
Bedwetting Bedshitting
Head and body rocking
My eternal protector
Got me a bed protector
Pancreas the warehouse of enzymes for digestion.Because of tumor congestion delivery to the gut is blocked
Food is not broken down nutrients cannot be delivered to cells
Stormy world that dwells
Food simply goes right through and out the other end Without being digested and absorbed.
Starving the cells
Malabsorption causes diarrhea, bloating, cramping, abdominal pain, fatty stools with a strong odor, and possible deficiencies of fat-soluble vitamins (A, D, E and K)
.
My am getting abdominal pain, liquid diarrhea, sudden blurry vision, tiredness,fizzy burps,odorous fatty stools
Elementary, Dear Watson
I am the odd one
Sudden electricity goes through parts of my skull or leg
Crushing my spirit is like crushing an egg
It's true, people are disappointing,
Few doctors are discouraging,
Government is displeasing
How come by telephonic conversation
Proton therapy is apt, was the determination?
Old scans were sent via G-Drive in the age of technology
For evaluation by Radiation Oncology
Pancreatic prescription for evaluation by gastroenterology.
No need to open my brain
While talking symptoms are evident
Discussed and felt more confident
In vain, for his literature could not furnish an Indian precedent
I am not alone, Dr Russell Lonser's letter is self evident
Genetic disorders exploit the fundamental logic of evolution unlike any other illness. If we, as a species, are the ultimate product of Darwinian selection, then so too is the disease which lurks inside me and I’m a freak of evolution. Evolutionary diseases can’t yet be undone, but some do have treatment to provide longevity.
To tackle the crisis there was a doubtful sanction or approval of support.
Then it is an entirely hypothetical, imaginary form to someone who then wrote a brief description of it. If this description of a rare disease.
If we have luck enough to get the decision makers' kins sick genetically being unable to assist them, let alone cure poor children she'll be desperate for a cure.
Even what remains discredited and truly eccentric will help save more lives than any pill or conventional medical guide. Or a conventional doctor, for that matter.
Could well mean that government funding for a cure will soon be at an end, support nonetheless for obscure and discredited diseases
Everywhere there's some chaos and uproar but everyone is leading a filthy life never cleaning up the dust settling in layers. With a few dead trees surrounding their lives, every single person seems to be the mirror image of the other, living in a mixture of the garbage but calling themselves aficionados of life. I ask you, My Lord, what do they perceive life is? I think for life and lust are synonymous. Everyone has a similar hobby, that of collecting money.
What do I need? Money? To fight through the hazards of life you need money. When malady strikes, your life becomes a tale of courage in the face of endless circumstances and the distressing horror, banknotes resuscitate you. Therefore money can buy life for me.
In the kingdom of partially blind,
A prisoner of reality,
Trapped in the daily grind,
With high hope-desire cackling with glee,
In my leaky raft, I muse ye!
Close-fisted government has close-fisted citizens with money collecting as hobby
Yet I thought among the world of people that we are connected. According to neuroscience, our brain is designed to make us sociable. The neural bridge lets us affect the brain and body of everyone we interact with and vice versa. The more strongly connected we are with someone emotionally the greater is the mutual fondness.
CSR has a tendency to block my number. Panacea Biotech and few did.
I am not Benjamin Button with a rare aging ailment that makes the baby born begin life as an old man and proceed to age backward.
It's a ghastly joke of fate along with all the coexisting rare diseases the Creator forgot to add this one. If he had an alert mind he would have done so and I would have benefited from NATIONAL POLICY FOR RARE DISEASES, 2021 where only those diseases diagnosed as a baby or child are included. Itching and scratching diseases get full attention.
Right to Equality ensures equal rights for all the citizens.
Then why is the government discriminating based on disease, even a rare disease?
No one shall be deprived of life and personal liberty. “Right to life” included the right to lead a healthy life to enjoy all faculties of the human body in their prime conditions..
This is just asking from a humanitarian background. Concepts that should be appreciated by healthcare professionals when dealing with patients with chronic or terminal illnesses.
Could well mean that government funding for a cure will soon be at a hypocrisy, support nonetheless for obscure and discredited diseases is on whim.
I had to go for the rare disease policy. But a 41 years old with recurring disease and the NET cancer likely to recur want to want me to stand under their keen observation studying my dimension to accurately decide if I am worthy of life, ignoring that I recently had Covid, I am immunocompromised and under chemotherapy for NET cancer which has metastasized and has a recurring tendency.
Well, if you ask me, does Covid impact brain tumor treatment? I'd say yes because I got Covid myself.
Mansi Aggarwal ( sister-in-law and I hate to say I have a relationship who threatened me to die)and hubby( hate to say he's my brother who couldn't protest for seriously ill sister) are crazy.
I deciphered that they thought Mum although started with CT level 21.05 because at 68 she developed moderate Covid perhaps because of collecting the deliveries of medicines or food kept in the bag hanging on the door. Perhaps some delivery men might be Covid positive and she collected stuff after an hour but aSARS-CoV-2 remained viable in aerosols throughout the duration of 3 hours, with a reduction in infectious titer from 103.5 to 102.7 TCID50 per litre of air. This reduction was similar to that observed with SARS-CoV-1, from 104.3 to 103.5 TCID50 per millilitre.
As from 18/3/2020, we are under voluntary isolation to avoid the pandemic and just Mum collects the deliveries hanging on the bag outside the door after the person has gone for over an hour.
Also since Mansi Aggarwal had Covid below 20 and tested negative once they thought Mum had a high viral load and because she came out of her room to give my medicines and breakfast which happens to be a mere gruel.
Mansi Aggarwal thought her hubby will contract Covid and if I die everyone will be saved because Mum will not have to care for anyone.
That's why she hit me twice and said I have to die right now.
Good logic. But I got Covid from Mansi Aggarwal after 3 days. Mum had symptoms on the 28th. She might have contacted it before as the incubation period is 2-14 days but I didn't get it from her because she wears a double N95 mask while coming out of her room.
She was a patient with few symptoms for 26 days under isolation with high viral RNA load in the nasopharynx early in the course of disease.
CT count or cyclic threshold is inversely proportional to the viral load..more than 30 considered very low infectivity..less than 20 high infectivity..20 - 30 moderate infection- hence Mum had moderate infection which rose to CT count 28 and now vamoosed, gone!
Experts have also strongly suggested that solely relying on testing as a safeguard can make people ‘lax’ and take other safety measures, such as mask-wearing and social distancing lightly, which could be the two biggest factors which can spike up infections. Remember, the tests are a preventive measure and only effective, as long as you put in place other security measures. But she put my life at a risk by subtly killing me.
The most peculiar and constant query has been about those who have COVID-19 symptoms but continue to test negative in RT-PCR tests. Sometimes, even though CT scan reports display patches in lungs due to coronavirus, the RT-PCR test report remains negative. According to experts, RT-PCR is the gold standard for COVID detection, however, as per reports from across the country, at least 1 in 5 patients may end up getting a false negative report. Why is that happening?
Even though RT-PCR is the gold standard, it's known that there’s a 30 percent chance of it being inaccurate. Moreover, when the testing kits are developed, the scientists pick up those parts of virus which are least prone to mutate, therefore this could be a reason behind the false-negatives.
The second reason for this could be that the viral load in your body is so low that it's not getting detected in the RT-PCR test, as per experts.
The sample collection, transportation as well as the overburden of the cases, wherein the labs are not able to complete the analysis of the sample, plays a major role in the quality of tests, Dr Mahajan explained.
Next, repeat your RT-PCR test in 2-3 days, and take advice from your doctor to get a CT scan, says Dr Ray.
Blood tests at times are a good marker of inflammation and they can also give you and your doctor an idea of what is going on in your body, in particular, the C-reactive protein and the D dimer. Both of them are said to be a good testing ground for understanding what is happening in your body.
The RT-PCR test was not done in my case because I have trouble swallowing food and medicines, Here I'd like to state The cranial nerves associated with the swallowing process are the trigeminal (V), facial (VII), glossopharyngeal (IX), vagus (X), accessory (XI) - usually not considered - and hypoglossal (XII).
It should be emphasized that the structures involved in the swallowing process are pairs, both anatomically and/or functionally, due to the dual-side innervation.
Anatomically unique, the tongue, palate, pharynx, and larynx are functional pairs, each side having independent innervation.
Hence it might be extremely hurtful as I get pain in the pharynx and larynx and often my tongue gets paralyzed. Voice becomes hoarse after speaking a bit.
Both Naso and Oropharyngeal samples are collected. If there's a problem in nasopharyngeal then it can be done in Oropharyngeal sample only hence I got my CRP, D-Dimer and antibody tested.
The transplanted liver has been affected and the enzymes were high which during my MDR TB was never so high.
There was an attempt to kill me mentally as well by reporting my blog and blocking my reading and writing penchant which is the only force which keeps me alive.
Meanwhile, the oxygen level suddenly dropped and and NGO Jeevan Stambh loaned me an oxygen concentrator
I experienced horrors that would give most people nightmares for life but the thing is if you face serious issues from a younger age you don't cringe inside or give up on life. The older you get without ever having a real problem you don't know how to handle it. Starting early gives you a perspective if you don't die first. but still I was provoked because I have lost weight due to my diseases and she's healthy and stout. I couldn't take the full impact twice.
That made me put up a status on Facebook,
"If I die today within some time, nobody is responsible for that because my brother has to live and take care of my wonder mum. I have chest pain and I am not feeling well.
I ought to die because I am a bad soul burden to all and I am going to take off adieu.
15 surgeries and now the nerves blasted my existence. Pancreas. A rare genetic cancer patient has no right to live.
Long live Arindam Bhattacharjee Mansi Aggarwal
Thanks for your tip that I ought to die now"
Dolly Sharma from Mahajan Imaging called immediately and calmed me down. She said I am God's child and it was very kind of her.
The woman told me to embrace winter
Not knowing I am December born
I carry winter in my right pocket
Fifteen times have taken it out and kissed the cold lips
Enjoying the twilight.
I had so many life threatening surgeries, especially the chemotherapy for metastatic NET cancer and my realisation of Memento Mori started very long ago.
Hence Capre Diem.
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