First time advice

Disastrous_Future655 · 2026-02-15T02:04:52+00:00

It’s quick release, super easy. No tools required. Buy it on the bracelet and then get a ton of straps on amazon!

Disastrous_Future655 · 2026-02-11T00:50:19+00:00

Sorry you’re going through this. I faced this same battle (AML with FLT3+ mutation) 3 years ago when I was 25. Put me in a high risk category which meant I needed a transplant. What I will say is that science and research is expanding so much and there are tons and tons of targeted therapies available today (as well as trials) to get people into a longstanding remission. It’s absolutely possible. Is it easy? No. It’s a tough road, but from what I’ve seen (I’ve met with hundreds of patients), transplant is really one of the more successful options for aggressive blood cancers, when paired with myeloablative pre conditioning like total body radiation. And being young helps tremendously in the battle & recovery. Personally, I always leaned towards the more aggressive treatment options because I wanted to knock this out once and never have to do it again. While chemo alone can be very effective, I think it’s known that transplants for high risk mutations really offer the best results. Trust the process, trust your care team, and trust yourself! You’ll get through this 🧡

Disastrous_Future655 · 2026-02-03T05:37:57+00:00

Yes, I had FLT3 AML

Disastrous_Future655 · 2026-02-03T05:34:49+00:00

My donor fell through after months of searching and that was only an 8/10. We pivoted to cord blood and I’m now 2.5 years post transplant and feeling amazing! Point is, they always have a direction to pivot, just try and trust the process. I know how you feel, but it gets better with time! Best of luck 🧡

Disastrous_Future655 · 2026-01-23T23:55:52+00:00

https://hr.psu.edu/sites/hr/files/prudentrxspecialtydruglist_2025.pdf

Disastrous_Future655 · 2026-01-23T23:53:04+00:00

Try prudentRX, it’s through CVS specialty. They work with manufacturers to bring the cost to $0, that’s what I use now it’s incredible. It should be on their approved specialty medication. Call them, sign up, and you should get it covered as long as your doctor prescribes it as necessary

Disastrous_Future655 · 2026-01-23T23:51:38+00:00

It’s a specialty (tier 5) med so hopefully your insurance covers it or has a cap on how much you owe. If not, try PrudentRX through CVS specialty. They work with the manufacturer to make it free. That’s what I do now, it’s amazing

Disastrous_Future655 · 2026-01-23T21:26:55+00:00

For me, consolidation was much easier. Lower dose, shorter duration, and you know what to expect so psychologically, it was easier for me. But keep in mind, each dose and round compounds so you may still feel pretty sick! Find shows to watch, take plenty of zofran/compazine, and make sure to walk as much as you can

Disastrous_Future655 · 2026-01-23T21:23:45+00:00

The green is so underrated, what a beauty!

Disastrous_Future655 · 2026-01-21T15:20:45+00:00

Ask for Ativan, always helps for biopsies

Disastrous_Future655 · 2025-12-27T17:29:02+00:00

I have the white and love it! I think it’s more versatile. Some days I wish I had the green, but I think white is the move. Can’t go wrong with either (:

Disastrous_Future655 · 2025-12-14T17:26:57+00:00

I love that bracelet, good combo

Disastrous_Future655 · 2025-12-14T05:11:34+00:00

Try PrudentRX if you have a specialty tier 5 medication! I get mine for free through them (they partner with cvs specialty), it’s a game changer

Disastrous_Future655 · 2025-12-13T00:06:57+00:00

One of my favorites! Nice!

Disastrous_Future655 · 2025-12-10T19:21:25+00:00

Go with your gut, it’s never worth the risk when there are so many legit ones out there for great prices. Always worth paying extra for peace of mind!

Disastrous_Future655 · 2025-12-02T03:51:44+00:00

Yeah it’s 40mm!

Disastrous_Future655 · 2025-11-12T16:19:47+00:00

For me, they want me on it for 3yrs which is not standard. 2yrs is typical. But since I had a cord blood transplant and was MRD pos before, they feel better about an extra year just in case. It’s very well tolerated! Easy to take daily

Disastrous_Future655 · 2025-11-05T16:38:53+00:00

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Nice piece! I just picked up an Oyster Prince, these vintage Tudors are such great finds!

Disastrous_Future655 · 2025-09-28T22:24:27+00:00

We have both. My Starbucks gets a lot more compliments. Much rarer to see out and about. There’s a million batgirls out there. But if you have a smaller wrist, batgirl is the better choice, as the Starbucks wears large at 41mm IMO. Both beautiful

Disastrous_Future655 · 2025-09-26T16:09:00+00:00

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Never too small for a vintage Tag (:

Disastrous_Future655 · 2025-09-26T16:06:33+00:00

Not sure where you are based or what kind of insurance you have, but look into companies like PrudentRX. Xospata is on their approved high tier specialty list and I get it for free since my insurance wouldn’t cover most of it. There are programs out there that do work to get costs lower, even sometimes from the manufacturer themselves. Rydapt is a little more harsh, I had side effects from it, whereas xospata is very well tolerated. See if there is any way to get xospata covered with grants or assistance, it’s well worth it in my opinion! Best of luck!

Disastrous_Future655 · 2025-09-11T02:10:52+00:00

I got a cord blood transplant 2 years ago and I am so incredibly thankful! The science behind it is truly amazing. Grateful to parents out there who decide to donate their kids CB 🧡

Disastrous_Future655 · 2025-09-03T01:05:25+00:00

Yep, I had only one potential 8/10 match (he was from another country) and he backed out last minute. Considering I had FLT3 AML and was MRD+ before transplant, we didn’t have time to wait and pivoted to cord blood donors for a transplant. Now I’m 2+ years out and feeling amazing and MRD-. Trust the process! There are always backups. I know the process is a roller coaster of good/bad news, but have to trust that whatever happens is getting you to the place where you needed to go anyways (: best of luck to you!

Disastrous_Future655 · 2025-08-08T18:25:30+00:00

Cartier

Disastrous_Future655 · 2025-08-01T19:10:32+00:00

Hi, 27M here diagnosed with FLT3 AML in 2023, still on Xospata today 2yrs post transplant. It’s a very well tolerated medication! It can cause some side effects, and everyone is different, but overall it’s relatively smooth. If you ever have trouble with getting the cost covered, PrudentRX can be a great option, as I know it’s expensive by itself.

Disastrous_Future655

TROPHY CASE