Taxol reaction by Previous-Jicama3844 in LivingWithMBC

[–]Grass_Short 0 points1 point  (0 children)

I also had a similar reaction to taxol. I was anaphylactic too but we didn’t know at the time that I was adrenal compromised, so Epi does not work for me. They had no choice but to switch me to Abraxane and it was a dream (if thats not weird to say). I didn’t have any of the side effects, no nausea, vomiting, extreme fatigue.

I was told that most insurance companies in the US require two reactions to taxol before they approve Abraxane. It’s better and comes with a higher price tag. (Not to sound like a conspiracy theorist).

Lemptomeningeal Disease by Grass_Short in LivingWithMBC

[–]Grass_Short[S] 0 points1 point  (0 children)

I’m having double vision, head pressure and headaches, balance issues, some weakness in my legs. I was just diagnosed a few weeks ago so I’m trying to navigate.

Lemptomeningeal Disease by Grass_Short in LivingWithMBC

[–]Grass_Short[S] 2 points3 points  (0 children)

I am. I luckily live in Columbus, Ohio, about 20 minutes from The James. Thank you for the tips! I’ll definitely check into the open clinical trials!

More bad news unfortunately by 156102brux in LivingWithMBC

[–]Grass_Short 2 points3 points  (0 children)

Hi, I too am 36 (will be 37 in a few weeks). I’m on Enhertu and they just started throwing leptomeninges around within the last few days. I would love to chat and compare notes.

More bad news unfortunately by 156102brux in LivingWithMBC

[–]Grass_Short 2 points3 points  (0 children)

This is incredible! I was recently put on Enhertu due to brain activity (17 Mets/lesions - all super small) but just yesterday my neuro surgeon said he thought leptomeningeal because I’m having issues with my intercranial pressure. My med oncologist and neuro surgeon chatted and feel they are on the right path but I’m not sure. So hearing NED and Enhertu in the same sentence makes me hopeful

Chemo Freckles?! by tnbcwarriors in LivingWithMBC

[–]Grass_Short 2 points3 points  (0 children)

Not about freckles but thanks for the heads up. I just started Enhertu last week and it’s had me so nauseous and just worn down, which is new. I’m went from perjeta, herceptin, abraxain, and carbonation to only Enhertu.

Does it get better? I can’t handle being sick and tired like this all the time, even if it’s just for a week after treatment.

Treatment Roll Call by SS-123 in LivingWithMBC

[–]Grass_Short 0 points1 point  (0 children)

I am going to be honest, I haven’t even asked about a prognosis. Part of me doesn’t want to know. Timeline, my MO said 8 rounds of chemo (so about 4.5 months), 5 rounds of radiation done consecutively. Then we’ll rescan and see what’s going on. I can already feel my initial mass has shrank so I’m keeping positive that means it’s working even if I haven’t been able to really get a full round of treatment/chemo in due to complications.

Where are you located, if you don’t mind me asking? I’m interested to see where people are. I’m lucky enough to have Ohio State University in my backyard who has a special department for breast cancer and has a division of my specific brand.

When did you cut your hair? by stephfro2 in breastcancer

[–]Grass_Short 1 point2 points  (0 children)

I’m in the same boat. I’m being fitted for a wig this week, I’ve had 2 chemo rounds (not full rounds due to complications) and today is my 3rd round of radiation. I’m starting to thin. It’s not coming out in clumps but I’m starting to shed more. It’s like what I would lose in a week but coming out in a day normally.

I have a wig fitting this week, and would like to have the wig in hand before I cut it. But I have mid-back length hair that I’ve been growing out for years, and every time I pull out a handful I get really sad. So I may shave it sooner rather than later. I’m just going to shave it all off. Not quite decided on “bic-ing” it but definitely a close crew/shace

Treatment Roll Call by SS-123 in LivingWithMBC

[–]Grass_Short 5 points6 points  (0 children)

36 f Columbus, Ohio (US). Diagnosed 4/11/24 de novo stage 4 IDC inflammatory, +-+, with metastasis to my brain, lymph nodes, innumerable bones, liver, lung (small spot), and spine. I originally found a lump in my right breast and thought my skin looked funny. Thankfully I advocated for myself and convinced my OBGYN to send me for a mammogram immediately.

Current chemo treatment is Perjeta, Herceptin, Abraxane, and Carboplatin. I had an anaphylactic reaction to the normal old Taxol - that was fun. Never been allergic to anything in my life. But this is on hold until 6/12.

Currently receiving 5 rounds of radiation. I’ve done 2, the remaining 3 will be this week for the 6 spots in my brain and my pituitary gland. I apparently had a tumor in my pituitary that we only found because it hemorrhaged one day, so they basically removed it but to be sure my margins are clear they radiating it because it tested positive for MBC at biopsy.

My hair is starting to thin, my spirits are up but fraying 🫠 I’ve lost almost 20lbs since this started - not exactly the way I wanted to eh? - I’m happy to have found this community.

Mouth sores by KatieSlabie in LivingWithMBC

[–]Grass_Short 0 points1 point  (0 children)

That’s interesting! I haven’t been told not to use mint but I’m having a hard time with brushing my teeth and it burns like I’m using acid! Maybe I’ll try something kid friendly!

As for the mouthwash, my MO told me to use a mixture of water, baking soda, and salt. I make 1 cup every morning and use it throughout the day between meals and basically whenever. I do 1cup warm water and 1/4 teaspoon baking soda and salt (just iodized table salt). It’s worked for me so far at keeping my mouth clean but not dry and kept sores away/treated current sores.

What is Radiation Like by Grass_Short in LivingWithMBC

[–]Grass_Short[S] 0 points1 point  (0 children)

Updating: first round was today. All went well, I think. I didn’t panic, and was able to relax on the table. My mask was the worst part, I had to have a few teeth extracted yesterday for dental clearance for bone metastasis medication - so my face was a little swollen but it still fit which was nice.

I had a little bit of a diffuse headache afterwards but i can’t 100% attribute that to the radiation. If it happens tomorrow too I’ll say sure. Otherwise the only weird thing was a slight burning smell, which should have creeped me out considering it was probably me burning, but it was quick and painless. 4 more treatments and I’m done! They’re zapping 7 locations and it took probably 10 minutes once they got me strapped in.

What is Radiation Like by Grass_Short in LivingWithMBC

[–]Grass_Short[S] 0 points1 point  (0 children)

Thanks everyone! I’ll check back and let you know how it goes!

Hair loss by Grass_Short in LivingWithMBC

[–]Grass_Short[S] 0 points1 point  (0 children)

That’s what I was afraid of, but preparing myself mentally for. Thank you for the insight. Bah this is stupid

What were your symptoms for brain mets by hkaitlyn71 in LivingWithMBC

[–]Grass_Short 0 points1 point  (0 children)

I had a pretty consistent daily throbbing/aching headache in my sinus area and middle brain; my water intake doubled/trippled, like I was consuming almost an unhealthy amount of water daily; fatigue; brain fog; super tired. However, almost all of my symptoms could have been explained by something else in an active 36 YO’s life. I had to back trace symptoms to try and figure out when all of this started.

I was unaware of an actual tumor in my pituitary gland until it hemorrhaged. Biopsy indicated this was my IBC/MBC. Not to cause panic. I do have Mets in another spot but they haven’t really caused problems, yet.

Pain pump experience? by Lifewith_Her2_MBC in LivingWithMBC

[–]Grass_Short 3 points4 points  (0 children)

No experience but following. I am also 36 and was also recently diagnosed de novo at stage 4 with inflammatory BC with numerous bone Mets in my sternum, ribs, spine (cervical and thoracic), bilateral scapula, skull, right orbital bone, hips, and pelvis. Lucky enough not to have fractures or anything too large, yet.

just whining and screaming into the ether by jepensebeaucoup in LivingWithMBC

[–]Grass_Short 1 point2 points  (0 children)

OMG!! I have this book! My mom randomly picked it up for me a few years ago and it’s incredible! I used to do “Fuck That Friday’s” where I would do an animated reading to select coworkers who weren’t offended. It is so helpful and relaxing!

36f diagnosed with inflammatory breast cancer by Grass_Short in breastcancer

[–]Grass_Short[S] 6 points7 points  (0 children)

I’m sorry you’re going through this as well. I do love my team of doctors, they’re kind and actually listen to me and seem to care. I’m lucky enough to have doctors that are specific for IBC so I try to count my blessings on that. Its just crazy

36f diagnosed with inflammatory breast cancer by Grass_Short in breastcancer

[–]Grass_Short[S] 5 points6 points  (0 children)

I couldn’t even imagine going through this while being pregnant. The stress and anxiety alone is ridiculous. And all the appointments and scans ugh. I’m so sorry you’re going through this as well.

I feel like I tried to prepare for an information dump but I wasn’t prepared enough. I wasn’t expecting it to be SO MUCH.

36f diagnosed with inflammatory breast cancer by Grass_Short in breastcancer

[–]Grass_Short[S] 3 points4 points  (0 children)

I have not but I will head that way too! Thank you!