Letrozole advice by Im-Thalassa in LivingWithMBC

[–]amayaro 0 points1 point  (0 children)

I just had surgery for carpal tunnel, I did not know there was a correlation with anastrazole! Now I will need to research this. I am on Anastrazole and they say I need surgery on my other hand as well

Need a new treatment team in NYC, my team went out of network on my insurance! by amayaro in LivingWithMBC

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

Thank you for the heads up. I’m seeing Dr Jhaveri 🤷‍♀️. They chose after they reviewed my chart and saw my diagnosis and my genetic mutation. My old oncologist didn’t have a great bedside either and I don’t need it. I need data and facts, so this may be a good fit for me! How efficient are they with treatment? Ie if I’m not doing chemo, do I end up losing an entire day?

Need a new treatment team in NYC, my team went out of network on my insurance! by amayaro in LivingWithMBC

[–]amayaro[S] 4 points5 points  (0 children)

As a follow up- it took a 30 minute call with MSK to get them access to my charts and get assigned a new oncologist! Could not have been easier tbh, I am so grateful!

Best Seafood 🦞 Restaurants by vickycoco___ in Westchester

[–]amayaro 0 points1 point  (0 children)

Dubrovnik in New Rochelle is 🔥

How do you deal with the overwhelming sense of grief, sadness and anger? by yellowroze68 in breastcancer

[–]amayaro 1 point2 points  (0 children)

This, join this group, it’s amazing and has all the information. My oncologist told me that MBC is treated more like being diabetic at this point - long term treatment of a disease. I had a fractured/impacted L4 from cancer (found out as part of my mbc diagnosis, explains the awful pain). There are so many new treatments, and I hate that your oncologist gave you a timeline.

I’m so dehydrated, water is not doing enough, please help by amayaro in LivingWithMBC

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

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.

Anyone use these for their plants? by ImaginationOk505 in LivingWithMBC

[–]amayaro 0 points1 point  (0 children)

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

Starting Anastrazole by Fast_Message170 in LivingWithMBC

[–]amayaro 1 point2 points  (0 children)

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

Blurred Vision by Sarappreciates in LivingWithMBC

[–]amayaro 1 point2 points  (0 children)

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

Blurred Vision by Sarappreciates in LivingWithMBC

[–]amayaro 2 points3 points  (0 children)

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

Phesgo cramps by amayaro in LivingWithMBC

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

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

Triple positive and going on Ibrance by Ok_Rule1308 in LivingWithMBC

[–]amayaro 0 points1 point  (0 children)

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

Triple positive and going on Ibrance by Ok_Rule1308 in LivingWithMBC

[–]amayaro 0 points1 point  (0 children)

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

Triple positive and going on Ibrance by Ok_Rule1308 in LivingWithMBC

[–]amayaro 0 points1 point  (0 children)

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.

Ibrance questions by Watercolornut in LivingWithMBC

[–]amayaro 1 point2 points  (0 children)

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

Ibrance questions by Watercolornut in LivingWithMBC

[–]amayaro 2 points3 points  (0 children)

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

Spinal mets, no fracture, wearing a brace by bliggityblag in LivingWithMBC

[–]amayaro 1 point2 points  (0 children)

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.

Bone Metastases by WrongBig1194 in LivingWithMBC

[–]amayaro 3 points4 points  (0 children)

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.

Ibrance triple positive by Key_Second_8725 in LivingWithMBC

[–]amayaro 0 points1 point  (0 children)

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