1. Please tell us about your relapse in the last 3 years. Does neuroendocrine cancer have anything to do with VHL syndrome which you have been suffering from? If so, please explain.
When life is sheer willpower hanging by two or three threads, I tell Mum of the wondrous things in my rare and strange life and we together have journeys and magnificent adventures mostly making rounds of hospitals, I try to make life fun and exciting not to forget the whole thing but to remove the painful memories.
I will never forget the failure of the Trigeminal cyberknife just before the lockdown. We hurried to Bombay because the pain was indeed suicidal. Next day returned but upon coming back symptoms slowly started occurring
Difficulty speaking or loss of voice
Pain in the tongue
Voice becomes hoarse
Trouble swallowing food and medicines, I have to crush every medicine.
Trouble drinking liquids
Pain in the ear and behind it
Hear odd wheezing sound sometimes which feels like listening to my own breathing.
Unusual heart rate (I already take embetta xr 50 crushed)
Abnormal blood pressure
Problem with gait
Touching legs makes me fall, can't stand for long fall anyway
Nausea or vomiting
Abdominal bloating
A metallic sound in my ear.
They are increasing every day and more symptoms are getting added like back of the neck and head pain with burning in the right temple.
We returned from Bombay, on 18/3/2020, we are under voluntary isolation to avoid the pandemic with only Mum collecting the deliveries hanging on the bag outside the door after the delivery person has gone for over an hour.
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 tumors (NET) are a group of diverse neoplasms arising from cells of neuroendocrine origin. Neuroendocrine tumors (NETs) are rare tumors 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 tumor) and travel through the lymph system or blood.
The Lymphatic system is a scary term for me. 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. I am currently facing metastatic neuroendocrine cancer.
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.
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.
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.
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
Around 5 out of every 10 NETs (50%) start in the digestive system. This is also called the gastrointestinal (GI) system. It includes the:
Neuroendocrine neoplasms are rare malignancies. Their histologies vary from well-to-moderately differentiated neuroendocrine tumors (NETs) to poorly differentiated neuroendocrine carcinomas.
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.
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 pneuroendocrine 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.
My extreme diarrhea seemed doubtful to me and I got chromogranin A done only to find it elevated.
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 during returning from Bombay at the airport.
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.
I remembered these when I had extreme diarrhea for over 8 months.
Difficulty speaking or loss of voice
voice that is hoarse or breathy
trouble drinking liquids
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 apart from when bloating occurs.
As I get weak
Feel dizzy and sick
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.
PNETs are more aggressive tumors
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.
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.
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.
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. I could have done the Ga 68 dotanoc earlier, I thought about diarrhea and belly ache and elevated chromogranin A.
"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. My medical oncologist did the right inference.
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 roaming scot-free.
Your determination is an inspiration and my hope is that there is a turnaround in your fortunes soon."
Skin rash on the face, stomach, and the legs after the first dose 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. Till now my sugar machine says the readings are okay.
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
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.
Today I am writing this with extreme Bradycardia. I am on beta blockers which need to be adjusted.
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.
For more than one tumor in the pancreas, treatment is usually surgery to remove the tumor or surgery to remove the body and tail of the pancreas.
For tumors that cannot be removed by surgery, treatment may include the following:
Combination chemotherapy.
Hormone therapy.
Radiofrequency ablation or cryosurgical ablation.
For cancer that has spread to lymph nodes or other parts of the body, treatment may include the following:
Surgery to remove the cancer.
Radiofrequency ablation or cryosurgical ablation, if the cancer cannot be removed by surgery.
I had pulmonary, bone and lymph involvement of MDR TB and I dread if the destructive cancer can spread like MDR TB.
Hence, I believe Dr Randeep Gulerias words TB will be encoded in my genome. I suppose the coronavirus may sometimes slip its genetic material into human chromosomes.
Do you observe compassion fatigue from those around you? Do you continue to get the support you did, say, 3 years back? How are you affected now? Is your support system the same? If not, how has it changed?
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 food for my health.
Lack of compassion,disdainful remarks I might get from my brother, a cinematographer and sister-in-law, even bashing from which I got Covid but God grant me the serenity to accept things I cannot change, the courage to change the things I can, and the wisdom to know the difference,disappointment and anger welling inside me when she leapt on me and hit me saying " You bitch, you die right now, who will account for Arri's ( my brother)health.
When my uncle moved away 13 years ago my own brother left me for his wife in the absurdity of life. My awesome, compassionate mother loves me like before.
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 my life.
. Are you approaching CSR funds? How are you going about it?
Life's been a jolly good joke on me,And now is the time to laugh.For a day and a half I am a zebra, not a giraffe.
Battle of Plassey is going on with a Pharmaceutical company, instead of helping. Palashi is making health care the oldest profession and instead of helping increase the price of anticonvulsants.Certainly he is not Panacea or cure-it-all, but pain, injury and disease.
Coca cola said no and I can't force a friend abandoning a dying friend.
Generosity and altruism, because all are born selfish hurtful
It is hard to believe that this simple truth is not understood by those leaders who refuse their followers to be self-centered.Altruistic system is open to abuse by selfish individuals, ready to exploit it, because they're the chosen ones. Good friends listen, encourage your fight
Best friends are mother and daughter ."It Hurts, Not Being Accepted For Who You Are."
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.''
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.
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.
Please tell us about Proton Therapy? As opposed to Chemotherapy?
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. X-rays often deposit more energy within the healthy tissues of the body than within the tumour.
The centrum semiovale (plural: centra semiovale) is a paired mass of white matter superior to the lateral ventricles and corpus callosum, present in each of the cerebral hemispheres, subjacent to the cerebral cortex.
It has a semi-oval shape and contains projection, commissural, and association fibers, with a newly formed tumor on the left side causing stroke often.
A new finding is a tumor on both sides of temporal lobe
A brain tumour located in the temporal lobe may cause difficulty with:
hearing.
speaking.
identifying and categorising objects.
learning new information.
correctly identifying emotions in others.
memory loss.
seizures or blackouts.
sensations of strange smells.
It's a well-known fact Dostoevsky suffered from a rare form of temporal lobe epilepsy termed "ecstatic epilepsy." Dostoevsky used his epileptic experiences to create the protagonist of The Idiot.
Perhaps someday I will become Dostoevsky or Idiot but the chances of being an idiot look bleak because my " little grey cells" use them more than Poirot's.
After returning I had several problems. I got a bellyache for a few mornings which I least expected.
I am a Warrior princess who rides a zebra and I forgot my NET oops pet for days.
I noticed weight loss and after every meal, I gotta go to the bathroom.
I didn't mind ' I'm trying to lose weight and a weight loss specialist recommended a protein diet, nothing else... Should I think about diarrhea?
How are you arranging for your funds for treatment?
The least I had were answers as to why I have experienced so many health problems… Especially the anxiousness and nausea but now the diarrhea which won't non stop…. I am getting abdominal pain, liquid diarrhea, sudden blurry vision, tiredness, fizzy burps, odorous fatty stools. It's true, people are disappointing, foul-mouthed, few doctors are discouraging, and the Government is displeasing. But team of pro bono lawyers are representing me.
The vestibulocochlear nerve is the eighth paired cranial nerve has some problems and my hearing is distorted
The facial nerve (VII) is a mixed one, but the new tumours are somatostatin receptors.
Pancreas the warehouse of enzymes for digestion.Because of tumor congestion delivery to the gut is blocked. I need proton therapy in adjuvant with chemotherapy.
I have described proton therapy but chemo will only slow down the growth.
4. What is the therapy you are going in for now?
Food is not broken down, nutrients cannot be delivered to cells.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
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.
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.
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.
Fatal misdiagnosis is my other name
How I am alive and well, although without any complaint of breathing problems and cramping abdomen
medical puzzle, and to solve the mystery
Courage is mine, and I have mystery;
Wisdom was mine, and I have plenty of mastery
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