Acute Myeloid Leukemia, Myledodysplastic Syndrome, Dacogen, Decitabine, Venetoclax, Venclexta, [Video]

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This is an update from Jim Heath amateur radio operator W6LG. Jim had Myelodysplastic Syndrome that has become Acute Myeloid Leukemia. He was treated with Dacogen, aka Decitabine. Since that did not work or help in any way, they are going to add Venetoclax aka Venclexta.

Important Safety Information
What is the most important information I should know about VENCLEXTA?
VENCLEXTA can cause serious side effects, including:

Tumor lysis syndrome (TLS). TLS is caused by the fast breakdown of cancer cells. TLS can cause kidney failure, the need for dialysis treatment, and may lead to death. Your healthcare provider will do tests to check your risk of getting TLS before you start taking VENCLEXTA. You will receive other medicines before starting and during treatment with VENCLEXTA to help reduce your risk of TLS.

You may also need to receive intravenous (IV) fluids into your vein. Your healthcare provider will do
blood tests to check for TLS when you first start treatment and during treatment with VENCLEXTA.
It is important to keep your appointments for blood tests. Tell your healthcare provider right away if you have any symptoms of TLS during treatment with VENCLEXTA, including fever, chills, nausea, vomiting, confusion, shortness of breath, seizures, irregular heartbeat, dark or cloudy urine, unusual tiredness,
or muscle or joint pain.

Drink plenty of water during treatment with VENCLEXTA to help reduce your risk of getting TLS. Drink 6 to 8 glasses (about 56 ounces total) of water each day, starting 2 days before your first dose, on the day of your first dose of VENCLEXTA, and each time your dose is increased.

What should I avoid while taking VENCLEXTA?
You should not drink grapefruit juice or eat grapefruit, Seville oranges (often used in marmalades), or starfruit while you are taking VENCLEXTA. These products may increase the amount of VENCLEXTA in your blood.

What are the possible side effects of VENCLEXTA?
VENCLEXTA can cause serious side effects, including:

Low white blood cell counts (neutropenia). Low white blood cell counts are common with VENCLEXTA, but can also be severe. Your healthcare provider will do blood tests to check your blood counts during treatment with VENCLEXTA and may pause dosing.
Infections. Death and serious infections such as pneumonia and blood infection (sepsis) have happened during treatment with VENCLEXTA.

The most common side effects of VENCLEXTA in combination with azacitidine or decitabine or low-dose cytarabine in people with AML include nausea; diarrhea; low platelet count; constipation; low white blood cell count; fever with low white blood cell count; tiredness; vomiting; swelling of arms, legs, hands, or feet; fever; infection in lungs; shortness of breath; bleeding; low red blood cell count; rash; stomach (abdominal) pain; infection in your blood; muscle and joint pain; dizziness; cough; sore throat; and low blood pressure.

I was in the hospital 5 times last year and 1 time so far this year. I have had 20 transfusions. I have had 7 rounds of chemo that have made me very ill. I think the medical bills last year were greater than $500,000 and this year may be even higher. I do have Kaiser so much of that has been covered.

What happened at the Santa Susana Field Lab?
LA’s Nuclear Secret | From KNBC in Los Angeles:
“During its history, there were several nuclear accidents at the Santa Susana Field Lab. Some experts believe the 1959 partial meltdown at SSFL could be the worst nuclear disaster in U.S. history, surpassing the radiation released during the Three Mile Island accident.
What caused the nuclear accident at the Santa Susana Field Lab in 1959?
Poor environmental and safety practices resulted in radioactive fires at the hot lab and at least four of the reactors suffered significant accidents, including the 1959 partial nuclear meltdown.”

There was no containment building around the reactor. I knew of two boys in my neighbor who lived across the street from each other who died from cancer at about the same time after the meltdown.