OT: For heart issues - an email

I just received an email from a guy who has been a driving factor in my graduating year’s high school alumni group. He has been complain for some time about a deteriorating condition affecting his heart. (The reason for this introduction is to indicate that this is from a real person who has not made his condition a secret over the past few years. He recently was permitted, due to his deteriorating condition, to join a genetic drug trial - and I received the following email today (along with the rest of the alumni group):

EXACT Trial Update:

The gene therapy drug is working. I have not had an Angina Event or taken any Nitroglycerin pills since my surgery on May 18th (12 weeks), prior to the surgery I was having Angina Events every 3 or 4 days requiring a Nitroglycerin pill to stop the pain depending on what I was doing. I am now mobile again, I walk 30 minutes per day on the treadmill, I ride my bike, I go to stores without worrying about how many Nitroglycerin pills I will have to take. Prior to the surgery I had problems just walking to the mailbox.

On August 3rd I had a quarterly Cardiac PET Scan and was able to complete the entire test with no chest pain or shortness of breath, during the test I took prior to my surgery I had chest pains and they had to use the neutralizing drug to counteract the stimulant they using to put my heart under stress. On August 8th I had another stress test and far exceeded what I did prior to the surgery. On both of the baseline stress tests I took before the surgery I had to stop due to excessive chest pains, during the test I just took I went more than twice as long as the baseline tests and the only reason I stopped was the slope was getting too high physically and I was starting to breathe too heavy and was getting close to having to run, no chest pains.

The official results for the blood flow are still being analyzed by the Doctors at Harvard University, should be available next week. All of my Doctors are surprised by how fast and effectively the drug has worked in me. I will continue to be under evaluation and testing over the next nine months to determine the full effects of the drug. The big question they have right now is “How long does the effect of the drug last, are the results temporary or permanent?”

For any of you, or someone you know, who is suffering with Coronary Artery Disease and Angina there is relief on the horizon once this drug is approved by the FDA. My quality of life has been improved in just 12 weeks and it feels like the Fountain of Youth because I feel like I am 40 again. Prior to the surgery I was hoping to make it to 75, now I don’t see why 100 is not doable.

While the risk was high, participating in this Trial was one of the best decisions I have made. Fortunately, I have never had a Heart Attack, but they are currently working on a version of this drug that can help repair damage caused by a Heart Attack.

Thanks for all of your support during this process.

Jim


I did a bit of poking around and came up with this:
https://clinicaltrials.gov/ct2/show/NCT04125732

Referencing: XyloCor Therapeutics, Inc. (which appears to be private)

Jeff

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delivered directly to ischemic myocardium via surgical transthoracic epicardial access

An interesting approach…Gene Therapy

It says that it is a dose-escalation study; how often, not sure.

Thanks for the personal report, although anecdotal.

This is very interesting! If it really works, the overall improvement in quality of life will be huge. XyloCor has collected more than $50M so far in funding to develop this drug, and it will take plenty more money before it can become approved and generally available. Usually small pharma development companies partner with a big pharma at that point.

Of course, if this type of drug ever makes it onto the list where government can negotiate the price down to $10 or $20 a dose, no investor will fund it, so it will never exist in the first place.

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And on the front end…

https://www.heartflow.com/heartflow-ffrct-analysis/

I was introduced to this concept yesterday at my first visit with an intervention cardiologist after a late in life discovery that I have a familial dyslipidemia…and that “slightly” elevated LDL was more significant than it was given credit for.

I ended the day having learned a lot more, but knowing a lot less than I did first thing.