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Topic: Pneumonitis

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Posted on: Apr 6, 2021 05:25PM

DodgersGirl wrote:

I have been MIA for a while. Starting this new topic for those DX’d with pneumonitis while MBC.

October 2020, my TX was changed to Afinitor and Exemestane.

In November, I started to wake up at night feeling like I couldn’t breath. Afraid to lay back down, I would get up and sleep sitting up in my recliner. Due to CoVid, hubby and I started our days checking SpO2 values. Pulse Ox showed in 90s. Found comfort in that.

By Christmas, I felt breathing was a real chore. Pulse Ox in the upper 80s. Clearly heading in the wrong direction. I already had scans scheduled for 12/29 so didn’t seek treatments during Christmas holiday timeframe.

Wasn’t sure how I was going to get to the scans on 12/29 as walking that far seemed improbable due to lack of sucking in oxygen.

Managed to get through tests.

Sleeping in my recliner so being flat in bed was scary.

Dr appointment the first week of January. By now pulse ox was in the low 80s.

Dr said scans looked like CoVid. I told him I thought it was pneumonitis from Afinitor as I had no other CoVid symptoms and I don’t leave the house due to pandemic lock downs. Dr was willing to consider pneumonitis but said scans looked like CoVid. I was told to get a quick CoVid test after leaving doctor’s office and to get the longer CoVid test the next day. But in the meantime, Dr put me on 5 days of 60 mg of prednisone. Dr said if it’s pneumonitis, steroids will help.

Both CoVid tests came back negative. 5 days of Prednisone, I was feeling much, much better and full of energy. I could breath! Pulse ox back up to 96!!

2 days after finishing the steroids, I rapidly declined. Pulse ox down in the 70s if I moved around. Awful feeling. I called doctor’s office. They told me to go to ER.

I called an ambulance. Pulse ox at 69. Argggg

Arrived at ER where I was out on oxygen. Oh my gosh, was that glorious. I could breath!!! ER tested me for CoVid. (3rd test in a week). It was still negative. I told ER doctor what I thought was going on. I was taken for chest CAT scan. Pulmonologist called. I was admitted.

Spent 5 days in the hospital on oxygen. Got chest x-rays daily. Put on 2 antibiotics and IV Solumedral (steroid). On oxygen, SpO2 stayed above 95 but without oxygen, SpO2 was 79-84. Hospital had CoVid rule - no visitors so it was a long 5 days

Hospital got me off IV steroids and ordered home oxygen. I went home with oxygen tube with medical home care bringing me home oxygen concentrator. Put on prednisone where doseage was lowered every 5 days until dosage was to 0 mg.

SoO2 not improving. Went to pulmonologist. He said recovery will take time. He continued my oxygen treatment at least through May. I have another CT scan before May and then see pulmonologist in May.

I am now living with a 25 foot tethered tube to home oxygen concentrator. Tube isn’t long enough to go anywhere other than part of kitchen, family room, and bathroom.

I have a portable oxygen concentrator to get me to doctor stuff.

I thought I was doing better when just chilling as I was able to keep SpO2 up to 95 on my own. Walking around is a different matter. Can’t keep SpO2 up at all without oxygen. After getting 2nd CoVid shot, I can’t breath on my own at rest once again. Sigh.

Whining a bit here— cancer isn’t causing any pains right now. This would be a great time to get out of the house, maybe take a short trip but being on tethered oxygen, makes having a life seem like a dream. /whine. I am very grateful to have the oxygen readily available. The feeling of sucking in air but not getting any is terrifying.

I am at 2 liters oxygen at rest and 3 liters when moving. And constantly making sure family doesn’t trip over my oxygen tube.

Pulmonologist and oncologist both believe I did have/do have pneumonitis from Afinitor.

Dx 3/10/2017, IDC: Mucinous, Right, Stage IIIB, Grade 2, ER+/PR+, HER2- Surgery 9/10/2017 Mastectomy: Right Dx 12/2019, IDC, Right, Stage IV, metastasized to bone Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol) Hormonal Therapy Arimidex (anastrozole)
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Sep 25, 2021 08:50PM KarPC wrote:

flying kites - I am so glad you have more help now! I understand how scary this is and maddening when you are ignored. Hopefully the ball is now rolling and you will get treated much better!

​May 2021 lung nodule flipped from ER+ to triple negative. Liver tumor may still be ER+ Dx 4/2016, IDC, Both breasts, 2cm, Stage IIA, Grade 3, 0/14 nodes, ER+/PR-, HER2- Surgery 5/17/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 6/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/1/2018, IDC, <1cm, Stage IV, metastasized to liver/lungs, Grade 3, ER+/PR-, HER2- Radiation Therapy 2/2/2018 External: Liver Targeted Therapy 2/16/2018 Ibrance (palbociclib) Hormonal Therapy 2/17/2018 Faslodex (fulvestrant), Femara (letrozole), Zoladex (goserelin) Chemotherapy 2/19/2020 Xeloda (capecitabine) Targeted Therapy 10/14/2020 Afinitor (everolimus) Targeted Therapy 6/1/2021 Piqray (alpelisib)

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