The "What's on your mind?" thread

[LordoftheRings]

Originally Posted by Vilya

[Show spoiler]I am in a monoclonal anitbody drug trial, but it is a double blind trial (Phase 3) where only 2 out of 3 patients get the experimental drug. Naturally, I have no idea if I am getting the real medicine, or just saline solution, in my infusion sessions. The pharmaceutical company pays for the treatment and no price has yet been published for it, but I am sure that it will be wildly expensive when, and if, it gets FDA approval.

Those costs are covered by my Medicare Part D drug plan.

When a patient's medication expenses reach $8000 a year, we are placed on what is called "Catastrophic Coverage" and at that level the patient has no co-pays for covered medications for the rest of the calendar year. I hit that level instantly every January. Starting in 2025, patients will reach "Catastrophic Coverage" when their medication expenses hit just $2000 a year.

Vyndamax 61mg. costs $19,750.68 for a 30 day supply. Each daily capsule costs $658.36.

The next most expensive pill that I take, Motegrity 1 mg, is a bargain at $611.43 for a 30 day supply.

I take a few other "as needed" drugs, but their costs are nominal.

My diseases are Hereditary Amyloid-mediated Transthyretin Cardiomyopathy (hATTR-CM) and Hereditary Amyloid-mediated Transthyretin Peripheral Neuropathy (hATTR-PN).

An overview of my diseases can be found here:

https://ce.mayo.edu/sites/default/fi...%20Booklet.pdf

in short: "ATTR amyloidosis is a progressive and fatal disease that manifests clinically with sensorimotor polyneuropathy, autonomic neuropathy, gastrointestinal disturbances, and cardiomyopathy."

I am currently being treated by 12 doctors in six specialties plus my primary doctor. I have to travel to the nearest major city for treatment as my diseases are rare; only 50,000 people worldwide are estimated to have hATTR-CM and only 6,400 of those are in the U.S.

Median survival for hATTR-CM, when 50% of a group of patients die, is 25 months after diagnosis. I am in month 21.

Wow! I have less than zero clue about that disease; you just introduced me to it now.

I'm curious; are you older?

And, what is your most enjoyable pleasure in life; movies, music, reading, sleeping, socializing, eating, driving, all?

[Bernardo A.]

Originally Posted by Vilya

My diseases are Hereditary Amyloid-mediated Transthyretin Cardiomyopathy (hATTR-CM) and Hereditary Amyloid-mediated Transthyretin Peripheral Neuropathy (hATTR-PN).

I've studied it briefly years ago in med school but didn't really get in touch with it, but I remember a case that I saw.

[Vilya]

Originally Posted by LordoftheRings

Wow! I have less than zero clue about that disease; you just introduced me to it now.

I'm curious; are you older?

And, what is your most enjoyable pleasure in life; movies, music, reading, sleeping, socializing, eating, driving, all?

I am 62.

By far, my most enjoyable pleasure in life is the time I that I get to spend with my friends and what remains of my family. It does not much matter what we do when we are together, but I enjoy everything on your list except driving (it can be stressful and I am supposed to avoid stress), eating can be difficult due to my many digestive problems, and maybe sleeping because I sort of resent the time lost while unconscious.

My healthcare is very time consuming and, thankfully, a friend of mine that I have known since I was 9 years-old drives me to all of my long distance appointments in St. Louis, which is a 210 mile round trip. I am in no condition to drive myself that far and especially after my infusion treatments, which can last over 6 hours each time. I am exhausted afterwards and very medicated.

In 2023, I had 76 medical appointments and by the end of this month I will have had 64 so far this year; the overwhelming majority of these require travel to St. Louis. It is not lost on me how blessed I am to have a friend that is willing to help me this much; it is truly the very definition of going above and beyond.

[Vilya]

Originally Posted by sfmarine

I saw your bill in the other thread. So glad you don’t have to pay for it. Absolute insanity & I hope your treatments are going well.

Not sure if I can sleep tonight with the Yankees winning the Pennant!!

My treatments are slowing my decline, but I am declining. I am basically fighting a delaying action.

Very few could pay for my treatment. That figure does not even include the cost for all of the doctors, tests, hospital stays, surgeries, and procedures that I have had to have done. My healthcare costs have to be in 7 figures by now.

Congratulations on your team winning the Pennant!

[LordoftheRings]

Originally Posted by Vilya

I am 62.

By far, my most enjoyable pleasure in life is the time I that I get to spend with my friends and what remains of my family. It does not much matter what we do when we are together, but I enjoy everything on your list except driving (it can be stressful and I am supposed to avoid stress), eating can be difficult due to my many digestive problems, and maybe sleeping because I sort of resent the time lost while unconscious.

My healthcare is very time consuming and, thankfully, a friend of mine that I have known since I was 9 years-old drives me to all of my long distance appointments in St. Louis, which is a 210 mile round trip. I am in no condition to drive myself that far and especially after my infusion treatments, which can last over 6 hours each time. I am exhausted afterwards and very medicated.

In 2023, I had 76 medical appointments and by the end of this month I will have had 64 so far this year; the overwhelming majority of these require travel to St. Louis. It is not lost on me how blessed I am to have a friend that is willing to help me this much; it is truly the very definition of going above and beyond.

Wow again. In that post you've just said what matters; time spent with your friends and family. It's a great post from someone with a good heart and mind.

Best each and every single day.

[BluRayTim]

Originally Posted by TheSaunderschild1993

I hate the winter. It gets dark by 4. And it's freaking freezing.

Me, too. I’m personally a summer guy myself.

That’s why I want to move to anywhere in Florida or Southern Texas, like Austin or Houston.

[TheSaunderschild1993]

Originally Posted by LordoftheRings

Are you from Russia, London?

Edinburgh.

[civiclx]

Listening to some music in iTunes. I gots me some Alan Jackson playing right now. He might be my favorite country music star.

[civiclx]

I’m a little worried as I’ve been laying here, trying to fall asleep for the last 45 minutes probably. I’m going to get up between 8:20pm and 9pm I think to get ready for work and then headed out of town right when I get home and washed up. I want to be fresh and awake when I start my 3-4 hour trip.

[Driver78]

Someone just wished me a Happy Monday. WTF. Save those fake well wishes for Friday lol.

[mcrowell415]

[Bigdog]

Originally Posted by Vilya

Attachment 308531

At current prices, this 360 day supply, as seen on my table, costs $237,008.16. I get one box shipped to me each month from a specialty pharmacy.

And i bet that drug cost under .50 cents per pill to make for Pfizer. Many times the research is funded and sponsored by taxpayer dollars to, which they then turn around and rip off the public selling at these hyper inflated rates.

These places should be forced to prove why a certain medication cost a 1/4 of a million dollars for a years supply!

[fighthefutureofhd]

Originally Posted by LordoftheRings

Jesus Christ, who's paying for that!?
And what kind of fvckin' drogues cost that much; heroin cocktail molotov!?

My mom was taking a drug at one point that was being paid for. Had she been the one to pay for it, she would've eaten through her entire life savings in less than a year. One prescription. Just like my mom, Vilya has won the lottery.

Originally Posted by TheSaunderschild1993

I hate the winter. It gets dark by 4. And it's freaking freezing.

What's wrong with that. Would you rather be standing in a 3 inch puddle of your own sweat? I think not. People who hate cold weather baffle me. How can anyone like staggering heat? I don't want to feel like Burt Reynolds covered in Vaseline from head to toe. Except it's sweat.

Originally Posted by civiclx

Listening to some music in iTunes. I gots me some Alan Jackson playing right now. He might be my favorite country music star.

Have you ever had to settle for a burger and a purple snow cone?

Originally Posted by BluRayTim

Me, too. I’m personally a summer guy myself.

That’s why I want to move to anywhere in Florida or Southern Texas, like Austin or Houston.

They're not really that much better. Sure, they don't get terribly frigid or lots of snow. But they can get pretty cold. I live in the south and we're not immune to cold weather at all. In fact, Florida can get pretty chilly at times.

[Bernardo A.]

Originally Posted by civiclx

I’m a little worried as I’ve been laying here, trying to fall asleep for the last 45 minutes probably. I’m going to get up between 8:20pm and 9pm I think to get ready for work and then headed out of town right when I get home and washed up. I want to be fresh and awake when I start my 3-4 hour trip.

Perhaps a little Ambien could be of help lol

[Vilya]

Originally Posted by Bigdog

And i bet that drug cost under .50 cents per pill to make for Pfizer. Many times the research is funded and sponsored by taxpayer dollars to, which they then turn around and rip off the public selling at these hyper inflated rates.

These places should be forced to prove why a certain medication cost a 1/4 of a million dollars for a years supply!

The usual answer that I get when I ask why new medications costs so much is that the pharmaceutical company has to recover the costs of research and development both for drugs that make it to FDA approval and for those that do not. The failures have to be paid for, too.

Vyndamax is not even the most expensive medication that I get. Patisiran (Onpattro) costs $451,430 per year. I have been receiving it in a drug trial infusion every three weeks over the past 16 months, but that trial is coming to an end.

I have now been prescribed the new and improved version, Vutrisiran (Amvuttra), which is an injection given every three months. Annual cost for this drug is $572,164. I am scheduled for my first injection next month.

Both Patisiran and Vutrisiran are siRNA gene silencer medications.

With this change, my main three prescribed medications will cost $816,501.32 per year. This does not include the cost of the still being investigated monoclonal antibody infusion that I am (possibly) receiving; drug trial costs are covered by the manufacturer.

It's all pretty damn surreal.

[Tsukiyomi]

Why do people get mad when you do as you say you would? My brother constantly repeats the same nonsense "you have a nephew!!!" and I was open long before he had kids that I had no desire to play Uncle and that I really don't care. Yet he keeps expecting me to suddenly change because he decided to have a kid? I didn't ask him to nor did I pressure him and his gf to that was her mother that did. I'm going to be true to myself and that's it not cater to his expectations.

We get along fine otherwise but this just pisses me off.

[Hitman Horton]

Originally Posted by Tsukiyomi

Why do people get mad when you do as you say you would? My brother constantly repeats the same nonsense "you have a nephew!!!" and I was open long before he had kids that I had no desire to play Uncle and that I really don't care. Yet he keeps expecting me to suddenly change because he decided to have a kid? I didn't ask him to nor did I pressure him and his gf to that was her mother that did. I'm going to be true to myself and that's it not cater to his expectations.

We get along fine otherwise but this just pisses me off.

Instead of talking to a bunch of strangers, talk to your brother and make sure that he understands your feelings about this. Don't end the conversation until you're confident he gets it.

[LordoftheRings]

Originally Posted by Vilya

...

With this change, my main three prescribed medications will cost $816,501.32 per year. This does not include the cost of the still being investigated monoclonal antibody infusion that I am (possibly) receiving; drug trial costs are covered by the manufacturer.

It's all pretty damn surreal.

Some entire tribes don't make that in their entire existence ... billions of centuries.

[civiclx]

My car said it was 33 degrees outside about 30 minutes ago. I wasn’t outside my car 30 minutes ago but I was outside my car 3 minutes ago and it felt like it had warmed up to at least 35 degrees.

[fighthefutureofhd]

Originally Posted by Hitman Horton

Instead of talking to a bunch of strangers, talk to your brother and make sure that he understands your feelings about this. Don't end the conversation until you're confident he gets it.

That's very sound advice. Though, I might counter with the notion that his brother may never "get it". Some people don't. It sounds like he made his brother aware and yet his brother keeps insisting that he helps out. I'm with the poster. I'm about to be an uncle, but don't expect me to start helping out just because I can and you want me to. It don't work that way. Luckily, my younger sister doesn't live in town.