If anyone happens to know more about chronic WHO, I’d love it if you could share... What kind of symptoms should I look out for, what does treatment involve, and is it actually possible to get better? Any bit of info would be so incredibly helpful 😉
Aha... It’s definitely a lower price point. I mean, back in the day, my insurance used to cover those costs when I was over in Austria, so there wouldn't be much point in them paying for these $30 searches here$0.00, for people who can just get everything covered through a referral... you know, where it ends up costing like 10 or 15 thousand dollars, it isn't 🙂
mistyranger51 said:It's a specialized CT scan specifically for cancer patients, and since it costs $10, it’s probably best to get it covered by Medicare.
30 $0.00?!?!?!
I mean, I paid $1,400 while I was in Austria and I heard it’s even cheaper in Budapest... I guess where did this number even come from?
mistyranger51 said:Does anyone happen to know the wait time for a PET/CT scan at Beverly Hills? It's that specific type of scan that’s really helpful for people dealing with malignant diseases.
I think my doctor mentioned something about a two-month wait last time... the backlog seems pretty long... Still, it might be best to just give them a call and ask directly...
I find things like this incredibly difficult to process too, so I guess I'll just echo what Sophia Williams10 said... My deepest condolences to the family and friends... 😢
Justin Fox said:I don't think she really explained that harvesting from the hip involves about a hundred needle pricks into the bone, and that area is going to be incredibly tender—really painful, actually—for a few weeks. I also noticed the famous doctor failed to mention that the procedure leaves permanent scars on your skin. And, I see she (wrongly) claims the risks of general anesthesia are basically negligible.
Look, if my 15-year-old brother survived all this, I guess any donor could too, since they're definitely an adult and know what they're getting into. By the way, regarding the pain over those couple of weeks, that’s not quite right; the kid stayed home for four days, and since the transplant was on Wednesday, well, he basically just skipped school until the end of the week, then he was back at school and practice on Monday like nothing even happened. Scars? Honestly, you trip once and you've got a scar for life... Negligible risk? Maybe, but I suppose there's a higher chance of getting hit by a bus this afternoon.
jadeskipper18 mentioned the pelvic bone below the stomach, like that's the spot, 😁 but they actually take it from the other side—you know, lower back, above the glutes. 😉
jadeskipper18 said:So, I gave them a call and the woman was just wonderful. She explained everything so clearly, so I'm heading over there this Monday!
Three cheers for you! 👍 🙏
Just a heads-up for everyone else, there’s a charity concert happening on December 21st at Times Square in Washington, D.C., to help set up the Bank and Registry, of course... Definitely look into it! 😉
Walter Myers4 🙂 knows exactly what he’s talking about, so you might want to pay close attention.
Typing is basically testing for HLA—human leukocyte antigens... They compare samples to search for a match. If someone is a match, they get called in on the day of the transplant to the hospital, and that's when everything happens.
The bone marrow donation process goes like this: The donor arrives at the hospital the day before the transplant, and in the morning, they put them under general anesthesia and use needles in the bone (down in the lower back area) to extract the necessary amount of marrow. (In my brother's case, they took 1.5 liters). The donor doesn't have any long-term effects. He was back on his feet immediately, almost as if nothing had even happened... Oh, right—before the transplant, they actually took a dose of his blood at the blood bank on two separate occasions, so that after the marrow is extracted, they can give him his own blood back. If anyone has more questions, I'll ask my brother for the specifics; I wasn't feeling great those days, so I wasn't quite caught up on every single little detail of his condition...
Timothy Fox9 said:Honestly, because of everything I've been through, my pain tolerance is pretty low these days.🙄
Is that pain (like hitting your bone) just while they're doing it, or does it stick around? I'm hoping I can just take an Advil afterward to make things easier, because before this, I wouldn't even dream of doing anything without anesthesia.
My doctor mentioned I'd be stuck in the hospital all day, but the paperwork said it would only take about 20 minutes. Now I'm feeling a little confused.
It hurts right when they're pulling it out. You really have to stay still on the injection site so you don't end up bleeding. I'm not sure how long it lasts, but they had me lying there for quite a while during my hospital stay.
As for me, if anything, my pain tolerance actually went up after everything happened. Now, they could pretty much do whatever they want and I wouldn't even flinch.🙂
Regarding bone marrow, I’m not entirely sure how the process works, but if the little girl doesn't have any compatible relatives, I guess voluntary donors could coordinate with her family or doctors to step up for HLA typing. It’s actually a pretty simple procedure—you just have a blood draw...
There’s such an increasing need for more people in the donor registry... And honestly, it’s just wonderful to hear that there are people willing to donate bone marrow! I was lucky enough to have a brother who was a perfect match. He was in the hospital for just two days, and after the procedure, he felt totally fine, almost like nothing even happened. For a donor, it really is a straightforward thing, and I truly hope that once the registry finally gets running properly, we'll see plenty of donors. Since the chances of finding a compatible relative are only about 25%, and for an unrelated donor, I believe it's only around 1%.
Brian Mitchell44, I really hope this little girl can leave all these worries far behind her! 👍
It seems to me that they don't actually use general anesthesia for the biopsy here, maybe it's just done in a cytology clinic using local numbing... I guess it's pretty much like a standard puncture, except they might use a slightly thicker needle or something like that...
It’s almost like when you stub your toe on a coffee table—just a little dull ache in the bone. It really isn't anything major. I mean, if you've handled tougher stuff before, this probably won't even phase you 😉
Sophia Williams10 said:How did you figure out it was Hodgkin's?
I’d been "carrying" those lumps around my neck for about seven months, and they were actually visible to the naked eye... then, roughly seven months after I first noticed them, I came down with a nasty cold. I went in for a chest X-ray, and they found a 10cm node in my chest. Talk about a jinx.
I actually dealt with a swollen lymph node in my neck myself... and I've been living with Hodgkin's lymphoma for about four years now.
If I can offer some advice: just go see a doctor and ask them to biopsy that node. That way, you'll know for sure if it’s just something that clears up with antibiotics or if it's something more serious.
Just typing this out while I wait for my blood work results and the start of my second round of chemo. As long as the doctors have methods and therapies available, I’m happy to leave everything in their hands. If they ever run out of options, then maybe I'll look into some alternative routes. In the meantime, if there's a kind soul out there who could walk me through the details of the bone marrow transplant process from a donor, I’d really appreciate it... Feel free to DM me. Thanks.