Not only Irrfan Khan and Steve Jobs, Allan Rickman fought neuroendocrine cancer I am fighting it too.

 

The unusual birth of the eye-catching child of fond parents after a miscarriage and fetus getting problems while in the womb, were lost in the thought that behind the outer shell there might lurk some sickness never known to humanity and the ill-fated, ill-starred child would have to endure the worst in all walks of life and face countless challenges my parents never thought of that.

Have you ever said, "I'm fine, very good when you weren't because most people don't understand?"

But my heart was like a sponge, sucking up feelings and emotions, even pain. Born with a soul of a mermaid who could only suffer pain since mermaids have no tears I suffered more acutely.

From my early childhood, Mum became a vital and integral part of my life, the magic charm of my gloomy and solitary life. She has always made me feel so special.

Faces beshrouded 'neath a mask; I can't shun curiosity, and I wear a grinning mask.Pretending to be what they truly are. You don't need to look too far.

I have spent a lot of time in recent years trying to forget unnecessary things so that I will have room in my brain attic for some things that may be more useful. For instance, I have forgotten the longest word in the English language-- “pneumonoultramicroscopicsilicovolcanoconiosi”,*** or was it, “floccinaucinihilipilification”¨?

and what these terms mean but I can never forget those wretched smiling faces on the balcony. My father called the ambulance at night due to my pain because of a hemorrhaging liver and took me to the hospital and it's that view, when I looked up to the verandah above that has clung to my memory forever like flies in flypaper.

Uncle,  aunt and the Didi singer at Kolkata who tried to swat her out of the way like a fly sitting on the wall can be easily swatted with a rolled-up magazine.

‘Money’ and ‘Power’ are the root causes in every act of a felony, every crime, every treachery committed since time immemorial. Money, gold, holds allure because it gives power, a lavish lifestyle and many are ready to harm a life for its powerful charisma. Money tempts most people to wrongdoing. Crime is as old as humanity. Thus, it is since ancient times that brothers are slaughtering brothers for the power of the throne and the wealth it brings along. Slaughtering, poisoning, strangling, asphyxiating, backstabbing, but achieving money and power and destroying every life in the way. Such is the queer nature of the human race. A son instead of being dutiful towards his parents desires the end of the ailing, helpless parents and shoves them out of the way, a raving egomaniac parent drunk with the influence of wealth, affluence, power withholds what the offspring truly deserves, thus strangling the life out bit by bit.

From childhood, I have not been as others were,I never enjoyed hop-skip-jump that's for sure,Being a sick girl looking for the doctor's cure. .Do you ever wonder just what God requires? Given just one life to face things where everyone conspires. Without any play-fellow at school thinking I am in need some solicitude against the deluge of solitude.Parental solicitude was quite tireless.Father wasn't tough and prepared With faith 80% heart's blockage gasping for air. His efforts nobody in the world could compare.Gave her daughter a new lease of life. Soon the commander, solver of every problem died, Warrior Princess was born.

My foxy uncle took our house from us and we were left penniless and homeless. It was then that my real tough times began and we had two choices ...death or preservation of life.

Not only did we face shocking poverty where we didn’t have money for food the next day, but I acquired MDR- TB living in shabby houses and changed houses seven times. 

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.''

I know they are worthless thoughts, but memory and forgetfulness are beyond one’s control. I will tell you more about that later. I didn't have the language to express my feelings then and I felt like hiding in my shell with just books.

and my sketches when there was nobody to hear me out.

When life was sliding out of me

Hope roused the warrior inside

And I started my journey

A couple of weeks ago through medical doubt

I met someone I'd heard lots about

It was not an earnest medical scan

Her unaided eye could verify that her bumptious rudest ego began

Extreme mental distress—elevated pulse, perspiration, acute abdominal pain,

Suffered from diarrhea Pancreatic cancer is one of the most lethal malignancies in the world, with mortality rates being close to the incidence rates. The incidence rates of pancreatic cancer is 3%. Most patients with pancreatic cancer are diagnosed at the advanced stage due to the deficiency of a standard program for screening patients at a high risk of pancreatic cancer,leading to a poor prognosis with a 5-year survival rate of <7%

MK-6482 demonstrated durable efficacy in patients with Von Hippel-Lindau disease-associated clear cell renal cell carcinoma, pancreatic lesions, and hemangioblastomas by targeting the underlying pathophysiology of the disease.

MK-6482 demonstrated durable efficacy in patients with Von Hippel-Lindau (VHL) disease-associated clear cell renal cell carcinoma, pancreatic lesions, and hemangioblastomas by targeting the underlying pathophysiology of the disease.

Transcription:

So, let me give you a little bit of background to start with. VHL is, as you know, a disease associated with an increased risk of developing tumors in multiple organ systems, including the development of bilateral multifocal… so, kidney cancer. Traditionally, this disease is managed surgically, or sometimes with ablative procedures. In the context of kidney cancers, the goal of surgery is to minimize the risk of metastatic spread. So usually when tumors reach the size of around 3 centimeters or so, we think there begins to exist a risk for metastatic spread, and the bigger the tumor gets, the more the risk of metastatic spread. And so, to prevent this or minimize the risk of this metastatic spread, people remove these tumors, usually with a nephron sparing procedure.

New tumors keep growing because the basic issue, which is germline VHL mutation driving this process, isn't being taken away by surgical procedures, and so patients often undergo multiple surgical procedures in their lifetime. And when you add the surgical procedures occurring in the kidney, in the CNS, for pancreas, and other things, it gets to be quite burdensome for the patients over the course of their lifetime.

An attempt to treat patients with systemic therapy, you know, has been… several attempts have been made over the last several years. Initially, based on our understanding of the biology of VHL loss and how that leads to tumorigenesis… targeted agents were designed, evaluated, found to be effective in metastatic kidney cancer and the same agents were then tried in patients with VHL. We tried to see if we could trim their tumors and maybe minimize the need for surgery or delay the need for surgery. While several of these studies suggested that you could reasonably shrink tumors in the kidneys, we found that what was an acceptable toxicity profile for patients with metastatic kidney cancer wasn't necessarily so for patients with VHL.

These patients have, you know, a very, very different, you know, prognosis, very different outlook, very different lifestyles than patients with metastatic kidney cancer do and consequently, their ability to tolerate some side effects is very different from those in metastatic kidney cancer patients. So, in my experience, it's been very hard to effectively deliver VEGF targeted therapy in patients with VHL. And I've never really viewed it as a viable option for the majority of patients, particularly for long term years. In addition, it's been my experience, and those of others, that you don't see much by way of responses in the central nervous system… tumors. And there's very little experience in… with regard to pancreatic tumors, particularly neuroendocrine tumors in the pancreas. So for all these reasons, it's very clear that if you had an agent that was one more effective and better tolerated, we might begin to make an impact on these patients and maybe just begin to move away from surgery to some extent, or at least minimize the lifetime surgical burden of some of these patients. And so that was the logic really in trying to devise the study with MK6482.

Now, why MK-6482? It’s a drug that... It's one of the group of agents that was developed initially by a company that was then taken over, but the idea was to selectively inhibit HIF-2α. This is a transcription factor that we think plays an important role in mediating cancer formation in the setting of VHL loss, which is what we see in VHL patients. So, we think HIF-2α plays a very, very critical role and the two agents develop sort of in parallel, one called PD2385, was available for clinical use first. And indeed, it was looked at in both sporadic cancer kidney cancer patients and patients with VHL associated kidney cancer. We had a very small phase two trial with that agent in VHL patients and very quickly found that although the agent had some potential, there were some issues with the pharmacokinetics – the way the drug was handled by the body – such that not all patients, you know, achieved reliable levels of the drug in their system. So, with the availability of MK6482, which was a sister drug, with much, much better pharmacokinetic properties, attention quickly shifted to this drug. And this phase two study was designed really to address the question of whether we could control, shrink, or stabilize tumors in the kidneys, as well as some other tumors that are associated with VHL with this drug. The other end points… whether or not patients tolerated this drug. And so that really was the basis for the study.

The design was very, very simple. We… treat approximately 50 patients and then we treated around 61 patients in the study and wanted to ask what proportion of patients had what we call an objective response by traditional research criteria when looking only at the kidney tumors. So, we looked at the kidney tumors separately and determined what the number of responders was. And we did the same for other organ systems. So, each organ system was individually reviewed, so we would be able to calculate overall response rate in the CNS, for instance, or the pancreas. And that was essentially the rationale for designing the study and a very simple overview of the study design.

This drug if imported can save me.

Not only Irrfan Khan and Steve Jobs, Allan Rickman fought neuroendocrine cancer I am fighting it too.

My metastatic neuroendocrine cancer battle

 

Not only Irrfan Khan and Steve Jobs fought neuroendocrine cancer I am fighting it too

Neuroendocrine tumors (NET) are tumors arising from neuroendocrine cells in the body and are found in the gastrointestinal tract, and less commonly pancreas, lungs,thymus and thyroid C-cells. There has been a recent increase in the prevalence of the NETs, which is attributed to better diagnostic procedures. NETs were thought to be slow growing benign tumors in the past but almost all NETs are now considered to have malignant potential.

These tumors cause systemic symptoms by releasing vasoactive substances to the bloodstream and are often associated with psychiatric symptoms like depression,anxiety or psychosis. Treating such individuals would require multidisciplinary team approach due to the complexity of the illness. The purpose of this article is to review the various aspects of this illness and challenges of treating the associated psychiatric symptoms.

Neuroendocrine tumors (NETs) form in cells that interact with the nervous system or in glands that produce hormones. These cells, called neuroendocrine cells, can be found throughout the body, but NETs are most often found in the abdomen, especially in the gastrointestinal tract. These tumors may also be found in the lungs, pancreas and adrenal glands. Merkel cell cancer, a type of skin cancer, also is considered a neuroendocrine cancer.

KEY POINTS

The plan for cancer treatment depends on where the NET is found in the pancreas and whether it has spread.

There are three ways that cancer spreads in the body.

Cancer may spread from where it began to other parts of the body.

Treatment of pancreatic NETs is based on the following:

Whether the cancer is found in one place in the pancreas.

Whether the cancer is found in several places in the pancreas.

Whether the cancer has spread to lymph nodes near the pancreas or to other parts of the body such as the liver, lung, peritoneum, or bone.

Cancer may spread from where it began to other parts of the body.

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

Lymph system. The cancer gets into the lymph system, travels through the lymph vessels, and forms a tumor (metastatic tumor) in another part of the body.

Blood. The cancer gets into the blood, travels through the blood vessels, and forms a tumor (metastatic tumor) in another part of the body.

The metastatic tumor is the same type of tumor as the primary tumor. For example, if a pancreatic neuroendocrine tumor spreads to the liver, the tumor cells in the liver are actually neuroendocrine tumor cells. The disease is a metastatic pancreatic neuroendocrine tumor, not liver cancer.

Many cancer deaths are caused when cancer moves from the original tumor and spreads to other tissues and organs. This is called metastatic cancer. This animation shows how cancer cells travel from the place in the body where they first formed to other parts of the body.

Symptoms of neuroendocrine carcinoma can include:

Hyperglycemia (too much sugar in the blood)

Hypoglycemia (too little sugar in the blood)

Diarrhea

Persistent pain in a specific area

Loss of appetite/weight loss

Persistent cough or hoarseness

Thickening or lump in any part of the body

Changes in bowel or bladder habits

Unexplained weight gain or loss

Jaundice (yellowing of the skin)

Unusual bleeding or discharge

Persistent fever or night sweats

Headache

Anxiety

Gastric ulcer disease

In metastatic carcinoid tumor,the prevalence of depression is about 50% and anxiety about 35% .

Presence of psychotic symptoms with carcinoid tumors was reported in two studies . Two article reviews reported presence of cognitive symptoms in cases of carcinoid tumor .

The psychiatric symptoms may be due to multiple causes including the release of biogenic amines. Prevalence of psychiatric symptoms in cancer is high in general but studies have reported that symptoms of anxiety and depression are relatively higher in carcinoid tumors.

Serotonin: Serotonin is one of the biogenic amines secreted by the carcinoid tumors that play an important role in producing the symptoms of carcinoid crisis .

• About 95% of body’s serotonin is found in the enterochromaffin cells in the GI tract and the remaining 5%

in the platelet and the brain. The platelets do not produce serotonin, they uptake the serotonin produced by the enterochromaffin cells. In the brain, serotonin is secreted by the serotonergic neurons.

• Serotonin is produced from its precursor tryptophan which is also a precursor of Niacin. In carcinoid syndrome,

excessive production of serotonin causes depletion of tryptophan and decreased production of niacin as a result.

This leads to niacin deficiency symptoms, namely pellagra,

which can also contribute to the psychiatric symptoms.

• In the brain, serotonin production is dependent on the availability of tryptophan. As only L- tryptophan or free tryptophan [unbound to albumin] can enter the brain by crossing the blood brain barrier; it affects serotonin biosynthesis by the neurons. L- tryptophan level is also reduced by substances like cortisol, the level of which is high in cases of depression, which can further reduce brain serotonin production.

• Half-life of serotonin is about 5 days in the platelet, same as the life of platelet, whereas in the brain it is only few minutes and is quickly deactivated by the monoamine oxidase enzymes.

• Peripheral effects of serotonin are local vasoconstriction where it is released and also vasodilatation and increased capillary permeability; constriction of veins and induction of venous thrombosis and promotion of platelet aggregation.

Serotonin has a positive chronotropic effect on the heart through 5HT4 receptors and can cause cardiac rhythm disorders.

• Excessive serotonin gives rise to debilitating diarrhea affecting the quality of life of patients with carcinoid syndrome.

• Prolonged exposure to high level of serotonin can cause fibrosis of heart valves, more commonly on the right side,

causing valvular heart disease. Excessive serotonin is also linked to fibrosis of uterus, skin (scleroderma),

pulmonary and retroperitoneal fibrosis in the long run,causing multiple complications.

Low levels of serotonin are often associated with many behavioral and emotional disorders. Studies have shown that low levels of serotonin can lead to depression, anxiety, suicidal behavior, and obsessive-compulsive disorder. If you are experiencing any of these thoughts or feelings, consult a health care professional immediately. The sooner treatment starts, the faster you’ll see improvements.

Psychological aspect 

• Supportive psychotherapy, instillation of hope and providing support.

• Teaching coping skills and grounding techniques using mindfulness-based training.

• Getting connected with social worker and therapist.

Social and community aspect • Discharge planning meeting involving multidisciplinary team.

• Assignment of outreach worker to continue with the supportive work.

• Outpatient mental health follow up appointments.

• Pain clinic referral.

• Continuation with follow up with cancer clinic, cardiologist and other specialists follow ups.

• Follow up with her family doctor, Social worker and dietician.

Some of the tests that were done to diagnose the cancer or to find out the stage of the cancer may be repeated. Some tests will be repeated in order to see how well the treatment is working. Decisions about whether to continue, change, or stop treatment may be based on the results of these tests.

Some of the tests will continue to be done from time to time after treatment has ended. The results of these tests can show if your condition has changed or if the cancer has recurred (come back). These tests are sometimes called follow-up tests or check-ups.

My Cancer

 

My genetic cancer chases me incessantly 

Von Hippel–Lindau (VHL) has no outward manifestation only detected upon periodic screening/imaging, 

Suffering from a case of restless cancer syndrome

But I am not alone

Thousands of people may be suffering from this syndrome without knowing 

People, can't live like that

Wherever the wind starts blowing

Where there's river overflowing

When each time the medical man claims his price

It's rude and more often than not nice

Not when he failed in his line

MRI and pain is the same, doctor is sleeping on the job sign

Not when there's a constantly recurring off-beat fatal ailment.

The professional beguilement

Cancer is essentially side effects of the relentless mutation that made the diversity of life on earth possible.

Mutation is the key to our evolution.

 It has enabled us to evolve from a single-celled organism into the dominant species of the planet. 

Fighting the strange enchantment

The process is slow normally taking 1000 And 1000 of years. 

For 38 long years

And old homes scenes of my childhood

A fond memory appears.

But every few hundred millennia evolution leaps forward

Facing the mutation drives outwards

Urges me to go onwards

It is hard to look at the tumor and not come away with the feeling that one has encountered a powerful monster in its infancy

In the folklore of science, there is the often-told story 

Of the moment of discovery: 

The quickening of the pulse, the spectral luminosity

 But there is another moment of discovery—

Its converse—

that is recorded rarely: 

The discovery of failure. 

It is a moment that a scientist often encounters alone. 

A patient’s CT scan shows a relapsed neuroendocrine cancer.. 

Or negligence caused the cancer to metastasize

A cell once killed by a drug begins to grow back.

 A patient returns to the doctor with a headache after cyberknife of trigeminal nerve.

It is not in things it's in us

All memory is porous

No one pays me any mind

When medicine is socialized, when you have true universal health care, when everyone's treatment is the same regardless of age and socioeconomic station,

We  go along with that perceived injustice, 

it's just not just in the equation in the country 

Nothing doing inadequate and volatile knowledge

She said all Bengalis have stomach protruding upsetting stomach

I was so sick to my stomach

After every meal I run to the loo

Clutching my stomach like a kangaroo

Saw me through the most physically intense ordeal of my life

Stale relentless kind of quippiness

The world has no place for immortals

Ignorance leads to peoples death of sickness 

Deflecting any emotion with repartee

With my mysterious sickness I don't treat diagnosis by medical men as Gospels

They become vaingloriously hostile

After completing their medical degrees

 Do they plunge into the world of unique diseases, 

Keep themselves updated, 

What have I done, why am I hated?

Keep track of all those maladies?

Their misconceptions mistook for realities

The melancholia of the medical lore 

And fac'd grim Danger's loudest roar,

Because I possess possess full knowledge of those things or just a hunch what is right and what is wrong

I am brave and valiant, my knowledge is sharp and I want to finish strong.

Neuroendocrine tumours (NETs) are rare tumours that start in neuroendocrine cells. 

The neuroendocrine system is made up of nerves and gland cells.

 It makes hormones and releases them into the bloodstream my research tells

require urgent aggressive chemotherapy

survival in metastatic disease or recurrence after curative surgery.

All NETs are malignant (cancer) by definition. 

Some NETs are diagnosed early and you might be able to have treatment to cure it.

Thrill, thrill, thrill

 Glimpses of me getting changed 

Mind seems changed,

Thoughts and words rearranged

Getting strange and complicated feelings.

I know that I'm healing

Can't satisfy most of these deep curiosities and longings

Longing to have you hear

Knowing… my amazing feelings

No one thinks an ailing woman has longings and feelings

Feel free, so alive and the world is appealing

Appealing breath of fresh air

With birds nest of hair 

Fantasy dreams of people to fend off their fear of death

Dreaming endless thoughtless dreams

My life does not exist, it is but a dream;

Being partially blind life is a little like Oz, a little like Wonderland, a little like

Trapped like some sort of poor insect 

Inside a down turned glass and it tries to climb up the sides, and it can't, and it can't and it can't

War for a seasoned warrior is  flitting from thrill to thrill

A ray of sunshine in a cloudy day

Rain can come another day

An eye catching child grown up looks good and gay

Warrior smiles when sad

Relationships have all been bad.

Few friends a Warrior had

Laughs and cries

Mingled naturally with  maternal sayings wise

People may give up strength and power that they don't have any

Who hadn't got a penny,

Enough is enough 

I don't give up 

Even with metastatic NET cancer

I need a few answers

Life is short and precious with hope 

When people say Huh?

I say Uh-huh!

The country needs awareness, consciousness, fairness

Living with a sinister purpose despite troubles is thrill, thrill thrill

The glowing story of our existence

 Death that should not be feared, but rather the dreadful possibilities of Life.

Sometimes peace, and sometimes strife;

A weary but merry life

As I entered adult life 

I could categorize myself as 

happy, content, troubled, and sometimes willfully ignorant of the many troubles that can distress humankind.

Till the laughter sheds the darkness far behind

“Survival Is the Greatest Achievement”

When the world was not troubled

With other folks' strife.

Why would I want to take your life?

Unfelt? Ignored?

Life is unfair!’

 ‘I don’t deserve this!’

 Well, let me tell you that being a mutant in my life is no picnic either. 

I’ve suffered pain, cruelty, maltreatment, neglect.

 I’ve wanted to end it all, but suicide’s hardly an option.

I was taught about the preservation of life

I can not produce the ingredients of life. 

I have no right to take a life.

The grand show of life

There is sunrise someplace

The universe is not outside me 

I am a part of the cosmic project

I connect

With the energy within me

The atoms which make me are the stardust

The Cosmic work of art

Mother Nature's love

As I  suffered while the pain I rise above

Transformed the hearts of the stars

I wear my scars

 Like the moon and stars

Impeccable timing unlike Lestrade

 To begat us the stars exploded 

The aftermath of the fiery explosion 

Where stars blew up soul poured out a variety of precious ingredients 

 Infused cosmos with elements for us to generate Furthered us by propagate-evolve-mutate

Stars created life  in their fiery death

Gave us life and breath

When we die we leave a trail

The valuable information

Return to the Universe

Another star is created

A wonderful experience to be part of the universe

Returning again

The glowing story of our existence 

My Goddess

 I was born in Satan's house

Mister o' the Big House!

My mother’s pregnancy with me had been difficult

Messed up as I am still feel life is magical

And even though my problems seem unusual

Right choice is critical

In addition every situation is difficult

I prayed that God would send a miracle

There appeared a true blue sight

The  other night,

"I am in  your best critic and strongest supporter your Mum

Had not enjoyed extraordinary luck in life and love from Mum"

 I might have been living with my Mum at that very moment, she has saved my soul from being sad and glum

Showed me how  I can overcome

Not to worry, that's my Mum

We're off and unless we're blown into the mountains we desire to come.

And God in his Heaven

Has decided to give me Mum

Cause we have travelled

Life is harder to unravel

Then the holy paths we'll travel, 

The road gets hard to travel

When life seems to unravel

That's the time oh to say

Engulfed in determination life goes on 

Those who adapt to change blend into the cosmos

Slowly fade away 

Don't trip or go astray

In a cyclic pattern of life and death

Are the principles of the heavens

Like manna from the heavens come!