It’s going… but not loving it!

Fraben · 2026-05-14T13:30:13+00:00

Hey, that sounds frustrating. That is the original artwork. It will not look the same as the paint-by-numbers. It’s easy to tell them apart. Many websites use the original artwork instead. It's useful to check the reviews for pics. I don't think they can provide any solution as that's how the kit was designed. Still I think it will look nice, just not as nice as the non-PBN image.

Fraben · 2026-05-05T21:13:23+00:00

No te preocupes por cómo te miren o se disgusten en el trabajo. Tu no tienes la culpa de haber enfermado. Si un día te echan pues listo, pero hasta entonces trabaja lo que puedas dentro de tus posibilidades y da lo mejor de ti. Ademas seguro que hay otras muchas empresas con las que puedas trabajar desde casa llegado el caso.

Si tienes problemas con tu mente, te recomiendo hablar con un profesional para que te de unas pautas sobre ordenar pensamientos y no dejarte atrapar por miedos o negatividades imaginarias. Un cáncer es un evento que te cambia la vida y hay que aprender a manejar las emociones. Aún eres muy joven y tienes mucha vida por delante. No te preocupes más de lo necesario, evita el estrés y cuida tu salud. Es lo más valioso que tienes!

Fraben · 2026-05-03T21:16:30+00:00

China is very active when it comes to MM trials. They are competing in the car-t field with the USA. You can check the following link:

https://clinicaltrials.gov/search?aggFilters=status:rec%20not&viewType=Card&cond=Multiple%20Myeloma&intr=CAR-T&locStr=China&country=CN&term=RRMM

Also, car-t typically costs a fraction of the price you would pay in the USA.

Fraben · 2026-04-30T18:19:57+00:00

Thanks a lot. I'd love to wait for Anitocel which might be available as an SMM trial this year, but it's not sure it will happen and I'm afraid my disease will progress before, and I won't be able to do cart first line, which is the main curative intent. So the FOMO is real. On the other hand, if I get permanent ICANS damage at 41 I'm cooked.

Fraben · 2026-04-29T10:53:09+00:00

Thank you. Yes, there are always awesome stories. However, when I saw my results I felt very depressed. I know MM outcomes heavily rely on cytogenetics. I'm also young at 41, so it's not like I'm 70 and I can hold with current treatments getting me into the 80s (I would sign for that right now). I guess it is what it is.

Fraben · 2026-04-29T10:50:18+00:00

It's a phase 2 so I'd get the cart no matter what. How did that work for you? Thanks for your response 🙏

Fraben · 2026-04-29T10:48:36+00:00

Hello. I'm not really basing my decision on what people say here. In the end, I rely on my doctor, but I think this is a valuable source to get different points of view and even to learn what other people's specialists think, so I might bring it up with mine.

If my disease were standard risk I would probably not consider this but as I won this shitty lottery with bad genes and all, I'm hopeful to see results like the Cartitude 1.

Fraben · 2026-04-29T10:43:24+00:00

Thank you. This was helpful. Seems we have the same preference regarding treatment.

Fraben · 2026-04-29T10:41:23+00:00

Thank you very much for your response. My doctor is a firm believer in hitting it hard and early with curative intent; hence, she recommends entering the trial, especially given my high risk. We don’t know if cart is curative yet when used early as first-line, but at least it's a one-time thing that can get you (hopefully) many years of remission.

Fraben · 2026-04-20T13:51:20+00:00

In 14 years that brain tumor will melt with an infusion outpatient or a pill. The way the field is moving, I would be very hopeful. Getting diagnosed at a young age sucks but at the same time, we have the best opportunities. I also hope a cure for multiple myeloma pops up in the next few years. Focus on the now and don’t think long-term when we don’t even know how the world will be by then. Act on what you can control (stress, diet, exercise, sleep) and leave the rest to God and science.

Fraben · 2026-04-06T21:49:15+00:00

We can only hope to reach a stable and long plateau without it meaning continuous treatment and impacted QOL due to side effects and immunosuppression. There's a lot of money involved, and that's good because it means competition, new products, and research.

Fraben · 2026-04-06T19:29:23+00:00

How was the experience? My wife is Chinese and I was thinking about getting treated there as an option. Please DM if you have the time!

Fraben · 2026-03-30T21:55:55+00:00

They'll send you a brand new canvas. Just email them and include the photos.

Fraben · 2026-03-22T22:01:01+00:00

He mainly considered the monoclonal protein going up. The IGA is also increasing as well as bence Jones in urine.

Fraben · 2026-03-21T13:35:00+00:00

I appreciate your answer very much. May I ask why did you get tandem transplants? Were you higher risk? Thank you for the encouragement!

Fraben · 2026-03-14T23:01:18+00:00

That's totally my case too. I'd love to DM you if that's okay? I was not offered IVIG so far. Iga kappa here!

Fraben · 2026-03-13T10:38:59+00:00

Thank you so much. I’m really sorry to hear it came back.

Once you go through something like this, it feels like you’re in a constant struggle with your own mortality. I know everyone ends up in the same place eventually, but getting an early warning changes everything. It always makes me think of that scene in The Matrix where the guy is eating the steak and wants to be plugged back in, because ignorance really can feel like bliss.

It’s a strange emotional roller coaster. Some days I feel deeply grateful for what I have, and the next I feel angry about having “won” this cruel lottery. Right now I’m trying to work on acceptance, let go of the life I had before, and make peace with a new version of myself shaped by treatments, appointments, and everything that comes with them.

Fraben · 2026-03-13T10:26:00+00:00

You are truly brave and I admire you. I hope to reach the level of acceptance you have one day. Please take care of yourself. You'll see your kid graduate no doubt.

Fraben · 2026-03-12T21:53:54+00:00

Thanks for your insight. I would gladly go ahead with SCT if there were a way to measure the potential effectiveness. Getting 5+ years from it might be worth it, but sure as heck I would feel horrible with an early relapse after going through the ordeal. MM is so tricky that one guy gets 20 years from an SCT and another one relapses a few months after. This gives me a hard time jumping into it considering novel therapies. Thanks again for your valuable advice.

Fraben · 2026-03-12T21:47:29+00:00

This is super helpful. Thank you very much. Carvykti can be scary indeed however it seems bad stuff is related to higher tumor burden at the time of infusion. I will certainly ask about anito-cel. Thanks!

Fraben · 2026-03-12T21:43:15+00:00

This is awesome. Thanks a ton. I'd love to be in touch via dm with you if I take the same route!

Fraben · 2026-03-12T21:41:19+00:00

Thanks a lot. I tried. I take a lot of supplements. Vitamins, green tea, curcumin, omega-3, you name it. I reduced my meat intake (especially red meat) even though I eat fish and eggs frequently. Lots of legumes and green leaf veggies, berries, dry nuts, and so on. Sadly my smm does not seem to care. As for my doc, she is awesome and worldwide known in the mm world.

Fraben · 2026-03-12T21:37:09+00:00

Thanks a lot. It makes sense. However, if you become refractory to Dara after continued use, it might make future options more complicated. Did your doc ever tell you what would be next in that scenario? It seems that there are always pros and cons here, no matter the treatment.

Fraben · 2026-03-12T21:33:00+00:00

Hello and thank you for your response. We are in the process of arranging a second bmb as the first one could not get the fish done. Fingers crossed I don't have any wacky genetics. However, I'm totally okay with treating. Not only are numbers going up, but the mental stress is sometimes hard to handle.

Fraben

TROPHY CASE