Tuesday, August 31, 2021

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.








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