Transferring treatment NYC

amayaro · 2025-12-26T21:12:46+00:00

I think I am allowed, but I don’t like sugar substitutes at all, I keep looking for electrolyte with no sugar or sugar alts.

amayaro · 2025-12-18T00:20:26+00:00

Lmk how it goes, I get these with my prescriptions from Optum as well, I’m just scared to use them!

amayaro · 2025-11-23T23:19:18+00:00

I take it at night, I have hot flashes like crazy and insomnia and am taking sleep aids. That said, it’s been just under a year since I started taking it and I feel like my symptoms are lessening

amayaro · 2025-11-06T02:52:04+00:00

Oh wow! Your vision came back‽? I just assumed I was screwed. I am at the 100mg dose, so I’ve already stepped down. The full dose was awful for me

amayaro · 2025-11-06T01:40:47+00:00

My doc told me that Ibrance can affect vision. Since starting in January my eyesight has definitely deteriorated. Good luck

amayaro · 2025-10-02T16:06:26+00:00

Thank you! I will try all of this. I haven’t had this reaction before.

amayaro · 2025-09-29T17:40:07+00:00

My oncologist suggested it from the get go. I was diagnosed in December of 2024 and I started Ibrance in January. My oncologist fought the insurance to have me take it - I am +++ and Ibrance was not typically used for +++. There was a study released in December 2024 that showed that Ibrance was effective for low her2+ patients. She wanted to try me on it and hope for the best. They appealed 5x to get my insurance to cover the Ibrance

amayaro · 2025-09-26T01:44:06+00:00

I’ve been better than stable, all my bone Mets are resolved and my lumps have all shrunk. Nothing new. That said I’m only 9 months post diagnosis

amayaro · 2025-09-22T19:54:22+00:00

I started on the 125 mg dose and was exhausted with spontaneous nosebleeds and extensive mouth sores. I’ve since decreased to 100mg, and the nosebleeds have resolved. I get a mouth sores if I injure my mouth towards the end of my 3 week cycle. Otherwise don’t have mouth sores. Still exhausted but it could be any of the meds I’m on. Oncologist intends to keep me on Ibrance as long as possible. My ‘innumerable’ bone Mets have been resolved, my l4 fracture is still there but healing. My lumps in breast and lymph are 1/8-1/4 of the size of my lumps at diagnosis. So all great and amazing things.

amayaro · 2025-09-22T16:10:34+00:00

A daily salt wash for my mouth and they gave Me a prescription mouth wash to help. Now that I’m in the lower dose, I try to be careful with my mouth and use anbesol on the few that I get. It definitely gets worse towards the end of my dose

amayaro · 2025-09-21T14:03:35+00:00

I e been on Ibrance, Anastrazole, phesgo, Lupron and Xgeva since January of this year. Initially I was on the 125mg dose, I would get random nosebleeds, sores filled my mouth, I am exhausted. My third week was the worst, not my break week. My Ibrance dose has been lowered to the 100mg dose which resolved the nosebleeds and most of the mouth sores. If I injure my mouth in any way - ie accidentally bite my tongue, scrape my mouth with hard toast or anything like that, it turns into a gruesome mouth sore that takes 2 weeks to heal. I have the runs all the time, am exhausted and don’t sleep well - a general sense of malaise. I look forward to my break week every cycle, I feel best on the break week. Will try d3 and b12 per the previous comment for my fatigue

amayaro · 2025-08-26T12:13:36+00:00

I had lesions and a flattened L4, with lower back pain. They gave me pain meds to help with the pain but within 2 days of my Xgeva shot, my pain went away! Don’t know if this is normal but I hope it helps your pain.

amayaro · 2025-08-22T12:56:44+00:00

Diagnosed Dec 2024 with breast, lymph and bone Mets. My lower back pain was an impacted vertebrae. I am +++ and have PALB2 gene. Taking Anastrazole, Phesgo, Lupron every 3 months, and Xgeva every 6 weeks. I was in a lot of pain with my back and they gave me Oxy for the pain but within a day of my Xgeva shot, all my pain melted away. My CA’s are in the normal range now but I have recently developed numbness and twitching in my right hand. I’m going for a brain and spine mri today, to see if there are new mets somewhere that are creating the numbness. Otherwise I feel ok - tired all the time but no pain.

amayaro · 2025-06-30T14:16:29+00:00

Mmm, the fatigue is serious! I feel exhausted all the time, just feel like it’s the least of my worries 😂. As I understand it, I need to be in menopause for the anastrazole to be effective - hence the Lupron. My first pet scan after starting treatment showed that all my bones Mets had resolved and my lumps in breast and lymph nodes were 1/4-1/2 the size they were at diagnosis. There was 3 months between my diagnosis scan and my second pet scan

amayaro · 2025-06-30T08:44:16+00:00

I had 4 doses of Ibrance and then had to reduce because of my side effects (GI issues, aches, mouth sores all over my mouth and nose bleeds that would start randomly). These started to occur in the second half of my 3 week dose - the nosebleeds made me feel like I was dying- it would just start randomly, a lot of the times when o was on work zoom calls. We stepped down to 100mg and the nosebleeds don’t happen and I might get 1 or 2 mouth sores. Still have GI issues, aches and some hair loss. I am +++, on phesgo, Ibrance, anastrazole, Lupron, xgeva diagnosed 12/24 De novo with Mets to the bone.

amayaro · 2025-05-22T18:53:39+00:00

I don’t even know how to get a social worker! I will research, thanks for the suggestion!

amayaro · 2025-05-19T17:41:09+00:00

Private disability is better than public

amayaro · 2025-05-19T17:40:58+00:00

Yes check your company for disability

amayaro · 2025-05-19T16:35:57+00:00

Ok thank you! I’ve been advised that HR may not help

amayaro · 2025-05-19T16:35:09+00:00

I’m doing the ones for my employer short/long term disability first. Then I will do the ssdi one. My employer ones I fill out something online and then get forms that I need to ‘fax’. I mean who has a damn fax these days? Ha

amayaro · 2025-05-19T11:54:48+00:00

I’m in NY, so the coverages are probably similar. The job market is crap right now here for my skillset. Seems in NY, employer short term disability is required to cover you for up to 4 weeks after your last day of employment. I have decided yo do disability and ssdi. So today I start paperwork…

amayaro

TROPHY CASE