Today I started on the Sodium Phenylbutyrate (SOE-deem-um fen-il-BYOO-ti-rate) aka “PB”. It is typically used to help treat a deficiency of enzymes that help remove ammonia from your body. It has also shown to increase the expression of genes, block how the motor nerve cells in ALS die, and may prove to be an effective therapy for ALS. Sodium phenylbutyrate is considered medically necessary for the treatment of acute promyelocytic leukemia and malignant glioma.
The following is according to the National Cancer Institute:
“oral sodium phenylbutyrate
An orally active derivative of the short-chain fatty acid butyrate with potential antineoplastic activity. 4-Phenylbutyrate inhibits histone deacetylase, resulting in cell cycle gene expression modulation, reduced cell proliferation, increased cell differentiation, and apoptosis. This agent also initiates fragmentation of genomic DNA, resulting in decreased DNA synthesis and the inhibition of tumor cell migration and invasion. “
“However, there is no adequate evidence in the peer-reviewed published medical literature demonstrating that the use of sodium phenylbutyrate improves the clinical outcomes of patients with cancers of the prostate, breast, or cancers other than acute promyelocytic leukemia and malignant glioma. Current evidence is limited to in vitro and in vivo studies and Phase I studies. Prospective Phase III clinical outcome studies are necessary to determine the clinical effectiveness of sodium phenylbutyrate for cancer.”
Aetna
Clinical Policy Bulletin:
Antineoplaston Therapy and Sodium Phenylbutyrate
At The Clinic, PB is given to cover 96 of the minor genes that can’t be checked / addressed with conventional treatment.
I start with 1 tablet 4 times a day. Each day I add an additional tablet until I am up to 6 tablets 4 times a times (for a daily total of 24 tablets). This is done to make sure I can tolerate the drug and the increases in dosage.
It’s an expensive drug – $4500/month from The Clinic. This includes “case management” – which means I get to communicate with my Dr whenever I need to. Kinda what I thought a Dr was for, but guess it’s now called “case management”. There is no petition for financial assistance.
They sure don’t make it financially easy to stay alive… Maybe if it was more feasible, more people could afford it, and the cost would come down… maybe…?? I guess the bullet had to be bitten somewhere, and I guess it’s been determined that it is the patients who need to do the biting. Seems we get it coming and going…
Side effects I might expect are:
More common
Change in frequency of breathing; lack of or irregular menstruation; mood or mental changes; muscle pain or twitching; nausea or vomiting; nervousness or restlessness; lower back, side, or stomach pain; swelling of feet or lower legs; unpleasant taste; unusual tiredness or weakness
Less common
Chills; fever; joint pain; sore throat; unusual bleeding or bruising
Rare
Convulsions (seizures); dizziness; dryness of mouth; fast, slow, or irregular heartbeat; increased blood pressure; increased thirst; irritability; muscle cramps; rectal bleeding; swelling of face; unusual weight gain; weak pulse
Other side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue or are bothersome:
Less common
Changes in taste; decreased appetite; strong body odor
Rare
Abdominal or stomach pain; constipation; fainting; headache; mental depression; skin rash
Oh Joy.
Tags: Sodium Phenylbutrate
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