Posts by slypuma

Angela Wright, I think I messed up our DM, not sure if you even saw it...
Anyway, my doctor in NYC reached out to some specialist who deals with rib sarcomas (Dad can't remember his name), and from what I gather, the spots on the lungs are small enough that this chemo should basically wipe them out. She couldn't get an appointment with Joe Rogan, but she said she’ll try again.

Thanks, turkey 🙂))

Me again, probably boring myself already 🙂 but I can't find anything useful online...
Does anyone know where I can pick up a wig in Miami?? Is there a specific shop?

hmm, I can't get a hold of Dr. Šantek... anyone got a lead?

Angela Wright, thanks a ton. I’m pretty sketched out by this chemo too, because from everything I’ve read, it doesn't seem to do much... that's why I'm digging around before we dive into the whole mess. My dad is totally out of it right now, so my sister and I are basically running the show. Anyway, we'll just give Šantek a call, we don't really have another option... I just don't want her being worn down by chemo for nothing, especially since she isn't feeling it anyway. As for the folks in Germany, I'm really hoping for a quick answer. One more thing—how does Jondelis actually work?

@Angela Wright/">@@Angela Wright, we finally met with Dr. Vrdoljak. He and Mom’s oncologist decided on the AC protocol for chemo, which should kick off this Thursday. Right now, she’s taking beta-glucan and some homemade aloe vera stuff—anything else I should look into to help dull the side effects? Honestly, I'm pretty anxious about this treatment because I have no clue what to expect or how bad the fallout will be. We sent an email over to Dr. Šantek and the specialist in Germany this morning. Just waiting to hear back.

mistyjackal842, I'm so sorry 😢 my heart goes out to everyone dealing with this 😢
we aren't giving up, we'll try everything... thanks for the kind words

Mom is doing okay, just a bit weak because she lost a lot of blood before surgery, so she's dealing with some anemia. Otherwise, she’s functioning normally—walking, eating, talking—you’d honestly never even know she was sick. It’s just her mental state that's completely wrecked right now... my sister went to a medical board meeting today to try and get us an appointment with Dr. Smith. We know we can't cure her, but... I want to try everything.

My mom is 49. My sister just got off the phone with her surgeon... and honestly, I’ve lost all hope. He basically told us there's nothing left to be done. Since he was the one who actually removed the tumor, he’s certain we can't extend her life by months, let alone days... 😢(( He said he feels terrible about it and suggested we just focus on making her remaining time special with the little things... apparently, his own mother passed away from this exact thing. I don't even have the words for how broken we are. What am I supposed to do? Should we even bother trying anything?

Back again... Like I mentioned before, my mom has leiomyosarcoma. They removed the primary site (uterus and ovaries), but there are spots on her lungs and they suspect the liver might be involved too. We know the prognosis isn't great, but you don't give up hope easily. Her doctors in Miami are suggesting chemo, though from everything I’ve read online, it doesn't seem all that effective. A family friend who's a doctor in Washington, D.C. suggested we talk to Dr. Vardoljak in Miami instead. Has anyone here dealt with him? I also found an email for a specialist at a sarcoma center in Germany, and I'm considering sending the records over there. My main question is: should we agree to the chemo, or push for a second opinion? There's no point in the struggle if it won't actually work. Also, I'm thinking about getting her some aronia or graviola—does that actually help boost the immune system, and can I just pick it up at any local pharmacy? Thanks.

God help me... fingers crossed that tomorrow's PET CT comes back clear and there’s nothing to worry about. Does the report come out right away, or what?

Jamie Howard3 said:I'm a bit late to this, but you probably already found out there’s no way happening🙂...it's about $65,000 per dose.😢

Plus, even if you somehow managed to get a hold of it, the hospital wouldn't be able to apply because of their stupid funding rules.

Hmm, we don't really need it right now. If the PET CT comes back okay, they aren't planning on any therapy, just frequent check-ups...
Wait, what do you mean? Even if we could get it, they won't give it to her?? I don't get it...

So, we talked to the doctor. Since he realized what was going on right in the middle of the surgery, he made sure everything was cleaned out properly and took some extra samples. He said the main thing is that it hasn't spread anywhere; hopefully, it was encapsulated. We asked about Vertex Pharmaceuticals... he mentioned it’s a solid drug for targeting those types of growths, but she won't need it since everything came out clean. Anyway, she’s seeing him on Monday so he can walk her through everything and refer her to the oncologist... he actually thinks she might skip chemo entirely and just do some hormone therapy instead. It calmed me down a bit, whether that's rational or not, I don't know...
The results come in on Monday, then we send them off to Washington, D.C....

Thanks for all the support... We should hear from the doctor today with the actual details on the stage and what our treatment options look like. Mom has her regular checkup this Monday, and that’s when the doc will give us the news. We actually asked him not to be too blunt about everything—we just want to keep her spirits up and encourage her to keep fighting. She struggles with depression, so we're mostly worried about her losing heart.
Angela Wright, if you happen to know, how does Vertex Pharmaceuticals actually work? We read that it's an incredibly expensive therapy; any chance Medicare would cover it?

I'm honestly devastated. I have no clue how we're even supposed to break this to her... how do you even deliver news that terrible? ;(

The surgery already removed the uterus and ovaries... we're down in Miami, so do you think they should head up to Washington, D.C.? We haven't received any official word yet, but we know this guy is definitely...

We just got the diagnosis... 😢((leiomyosarcoma... we have a doctor in the family who took a look at the results... from what I've been reading online, things aren't looking great😢

Morning,
A few days ago we found out my mom has a malignant uterine fibroid (she actually just had her uterus and ovaries removed a couple of weeks back). We don't have all the details yet, but right after the surgery, they told us it was definitely cancerous and that she might only have 2 or 3 years left. The lab results came in, and they said she needs to follow up with oncology immediately. She doesn't know anything yet, and honestly, I have no clue how we're even going to break the news to her. 😢 What’s really messing with my head is how the doctor could give a 2-year prognosis right there in the OR based on some rushed pathology report from the surgical suite.

I’m leaning towards the hormone theory too. I’ve been dealing with extra hair growth on my face—specifically under my chin and above my lip—for a few years now, and my OBGYN basically brushed it off. My cycles are totally regular, though they shift by a couple of days here and there, and honestly, who isn't constantly stressed out these days? 🤷

Hey, my period is already two weeks late, but I took a test a week ago and it came back negative. My breasts are pretty sore—they feel heavy and firm—and I'm dealing with constant heartburn. Honestly, I have no clue what to think anymore... anyone else dealt with something similar?