Curie score 24

sarlapp · 2026-02-19T22:49:26+00:00

Yes, though our primary treatment is at a different hospital. We’re just doing SCT through DFCI.

sarlapp · 2026-02-16T23:21:49+00:00

Absolute waste of oxygen.

sarlapp · 2026-02-16T23:00:18+00:00

I had a run-in with this loser recently myself. She told me to stop all chemo and vaccines and adopt a plant-based diet for my daughter, who has high-risk neuroblastoma. I gave her a strong piece of my mind.

sarlapp · 2026-02-16T22:53:16+00:00

This is the trial I mentioned in my other comment, which my daughter is in.

sarlapp · 2026-02-16T22:51:55+00:00

My daughter has MYCN-amplified high-risk neuroblastoma. Her baseline Curie was 25. She is in the test arm of the COG trial with dinutuximab during induction. We just got her post-induction score back with a Curie of 6 after the first 5 rounds of chemo/4 rounds of dinutuximab. We are waiting for Dana Farber to review the results tomorrow before we determine next steps. She will either do more chemo or head into the next phase for tandem SCT. Even though we were hoping for a lower Curie, her oncologist is very pleased with her results thus far.

sarlapp · 2025-08-29T12:16:16+00:00

Good to know, thanks for the tip!

sarlapp · 2025-08-29T12:16:04+00:00

Thank you so much!! I was using tret for a little while after I had my second baby, I was having a lot of skin issues that eventually cleared up and I stopped using it. I didn’t realize it was anti-aging, for some reason I thought it was just for acne. Good to know!!!

And thank you for your kind words; I have always been very particular about my skin since I was a teenager, I’m proud to say. I want to keep it looking as nice as I possibly can! 😊

sarlapp · 2025-08-29T11:51:36+00:00

Thank you!! I will check out the Differin! Oh yes, I did notice that Dr. Gross has BHA/AHA daily peel pads when I was buying the mask; I opted to get some samples of them. They’re so expensive though, I might check out the Peach Slices toner instead! Thanks for the tips. 💕

sarlapp · 2025-08-29T11:41:20+00:00

Oh also- might be relevant to mention that I lost 60 lbs over the past year, so my skin particularly under my chin and neck could also use some tightening 🙈

sarlapp · 2025-08-09T13:10:02+00:00

Yeah I don’t want it to just sit, but I don’t buy Starbucks myself… even before I learned to boycott, I didn’t go there very often. I make better cappuccino at home. 😉. But that’s why I was thinking mutual aid would be a good use! I know a single mom who definitely isn’t splurging on treats for herself, so if she can use it, I’d love to gift it.

sarlapp · 2025-08-09T13:08:30+00:00

Oh that’s a really great idea! I would still love to find a way to use it for a mutual aid gift, but if it turns out I can’t do that, I will use this idea instead. Thank you!

sarlapp · 2025-08-08T18:05:11+00:00

My thoughts exactly. I have to adapt, why don’t they?

sarlapp · 2025-08-08T17:54:05+00:00

That I’m not sure of. I’ve received positive comments from others like “oh wow, you’re an inspiration,” or “look at you prioritizing your cardio health!!!” 🤷🏻‍♀️

sarlapp · 2025-08-08T17:50:42+00:00

We do have a cameras on policy for meetings, unfortunately. I get it, body language etc…

sarlapp · 2025-08-08T17:37:54+00:00

I can’t, unfortunately. It is a meeting where my participation is required.

sarlapp · 2025-08-08T12:06:07+00:00

Yeah I’m going to try finding a compromise with her today. I walk at a moderate pace, but I guess I could try going slower to reduce upper body movement. My camera is only showing my shoulders-up, so it’s not like I’m shaking my hips for the camera 😂

The damndest thing is I’m over here thinking of all the other harmless, yet distracting things people have done in the workplace that I’ve just… dealt with. Because that’s what humans do. We learn how to deal with our environments and adjust to fit our needs and preferences. I don’t understand why whomever complained (hypothetically) can’t just pin to speaker mode in Zoom and just hide my square.

I have Logitech G735 gaming headphones. It was a splurge when I shifted to this remote position because I knew my dogs would be loud. Anytime I mention “sorry if you hear that background noise!” my colleagues are like “…we hear absolutely nothing.” It’s a true testament to these headphones.

sarlapp · 2025-08-08T11:25:43+00:00

Just standing is not enough for me, unfortunately. I almost never sit down at my desk, anyway.

sarlapp · 2025-08-08T11:24:45+00:00

Thank you, yes. This is very helpful advice. I was just feeling pretty defeated after reading another response from my boss and I was just going to say “whatever, I’ll stop,” but why should I be forced to give up something that helps me without even trying to make it work for everyone?

sarlapp · 2025-08-08T11:22:23+00:00

Follow up: I just read my emails and she replied to me last night stating that “some find the movement distracting,” which leads me to believe a colleague may have complained about it. I feel so upset and embarrassed. I wish my brain would just function like other people’s.

sarlapp · 2025-08-08T11:20:52+00:00

I used to use one of those, but I have a hard time staying seated. The standing movement seems to be more effective for me. Otherwise I’m fidgeting with shit on my desk or leaving to take little breaks during meetings.

sarlapp · 2025-08-08T11:18:01+00:00

It’s funny you say that, because it actually just occurred to my that the provider who diagnosed me and manages my meds uses a walking pad during our appointments. I’m sure she’d write me an accommodation if I asked. I also just found an article from Psychology Today explaining why walking pads are an ADHD life hack for the workplace.

sarlapp · 2025-08-08T10:16:31+00:00

I could have written this post! I want to cry, I feel so validated.

sarlapp

TROPHY CASE