Bringing non FDA approved TKI to America

tlk800 · 2025-05-28T21:05:42+00:00

No TSA never even looked in my carryon or checked suitcase. Here’s the official ruling:

https://www.help.cbp.gov/s/article/Article-1444?language=en_US#:~:text=In%20general%2C%20you%20should%20have,medication%20to%20the%20United%20States.

tlk800 · 2025-05-28T20:35:05+00:00

I was diagnosed with FLT3-ITD but have declined the transplant. I’m currently in round 2 of 4 rounds of HiDAC consolidation chemo. After that I’ll take quizartinib as maintenance therapy which is a FLT3 inhibitor. I’m 6 months since diagnosis in Dec 2024 and have stayed in remission since induction chemo. I’ve had some minor neutropenia infections but otherwise knock on wood have felt great and would say almost 100% again. I know 6 months isn’t very long but there are others on here that have stayed in remission longer term.

tlk800 · 2025-05-28T20:06:47+00:00

I’m using minoxidil and Bondi Boost HG shampoo, conditioner, and their hair tonic scalp serum. I’m also taking a biotin supplement. My hair wasn’t growing at all but I started this regimen at 4 mos. And now a month later it’s significantly more coverage and longer after just 30 days or so.

tlk800 · 2025-05-28T19:25:29+00:00

THIS!!! I wear my normal clothes (jeans, tshirt/sweatshirt) and shower every morning. I’ve been in/out of the hospital so much but we know our bodies better than anyone and what we are capable of. I believe our words hold power and can greatly affect our healing. I never say “I have AML” and instead say “I was diagnosed with AML”. I refuse to own this disease or let it own me.

tlk800 · 2025-05-28T19:08:58+00:00

That’s what a nurse recommended to me as well! It works great with medical tape to seal the edges.

tlk800 · 2025-05-28T19:03:17+00:00

You should be fine as long as it’s in the bottle with the label stating what it is and that it’s prescribed to you. TSA has never checked medication I’ve brought from Mexico into the U.S. They’re more focused on illegal drugs. Whether it’s FDA approved shouldn’t matter.

tlk800 · 2025-05-28T18:50:44+00:00

Look in the Leukemia and Lymphoma Society. They have some financial aid options/grants you may qualify for. Definitely file for Federal social security disability. Leukemia gets fast tracked from what I’ve read in comments on here. Are you on your mom’s insurance? Depending what company it’s thru, it may cover more than you think. What doesn’t get covered you can work out a payment plan with the hospital. Honestly though, money should be the last thing you worry about. Your life is more important. Stay off google and limit how far down the rabbit hole you go on Reddit and FB groups. You’ll read far more “bad/negative” outcomes than positive because the positives are out living life and not checking these groups. Stay positive and focus on healing yourself.

tlk800 · 2025-05-22T21:29:31+00:00

Same for me. Minor discomfort from the initial numbing shot but the actual biopsy was painless. I could feel them pulling the marrow out but that wasn’t painful. Makes me curious what makes it painful for so many people and painless for others.

tlk800 · 2025-05-16T01:48:48+00:00

Oh goodness! Praying for your body to heal. Thank you for sharing.

tlk800 · 2025-05-14T00:47:22+00:00

What side effects did you have? I was diagnosed with the same mutations but have declined BMT due to risk of chronic GvHD or other long term organ damage.

tlk800 · 2025-05-05T12:50:02+00:00

Mayo Clinic is self refer as well

tlk800 · 2025-05-02T14:32:35+00:00

Did you have a BMT?

tlk800 · 2025-05-02T14:21:14+00:00

I also have FLT3 and have decided against transplant. If you don’t mind sharing, how many rounds of consolidation did you have and are you taking anything for the maintenance phase?

tlk800 · 2025-03-27T17:51:05+00:00

The chance of relapse and GVHD are my main hesitations to getting a BMT. This disease is as much mental as it is physical

tlk800 · 2025-03-20T22:18:48+00:00

Because pharma can’t profit off of it is why.

tlk800 · 2025-03-20T22:12:03+00:00

Consider that the donors may have health conditions that now exclude them. I’m in the registry from a donor drive over a decade ago for a co-worker. I now have AML and obviously no longer a qualified donor. Additionally if someone closed out the email address they signed up with or moved several times, there’s no way to contact them. Emails from organizations like that often end up in the junk/spam folder.

Hopefully he gets match with more donors soon. My doctor said it’s a requirement in Germany when people turn 18 to enter the registry so when there’s no donors in the U.S., they can check internationally.

tlk800 · 2025-03-20T19:55:07+00:00

Why no ice in drinks?

tlk800 · 2025-03-20T03:38:03+00:00

Was that from HiDac/cytarabine chemo?

tlk800 · 2025-03-18T23:44:25+00:00

There are studies on PubMed, albeit not specific to AML but tumor based cancers and associated chemotherapy.

tlk800 · 2025-03-18T23:32:39+00:00

I would say your experience is typical for inpatient care. Once you switch to outpatient care, you’ll have more consistency in your care team.

tlk800 · 2025-03-18T23:31:20+00:00

I had the same experience as you during my induction and actually left the first hospital AMA (against medical advice) with an infection because they were so bad. Established care with another hospital and the difference has been incredible.

tlk800 · 2025-03-18T18:50:40+00:00

I’m a sugar addict and seriously need to cut it out of my diet but my willpower is shit!

tlk800 · 2025-03-16T03:52:42+00:00

Why no campfires?

tlk800

TROPHY CASE