Stage IV MBC Fitness
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Up until this week I have been plugging along going to the gym 4 x'sa week and my hobbies. I started developing shortness of breath last fall with activity. Initially it was blamed on low blood count. When it got worse and started affecf stairs, vacuuming and other activities I went to a pulmonologist. He reviewed the scan and could find very little explination. Tried inhalers. They discovered I have nocturnal desaturation without sleep apnea. So I use oxygen at night. I do have much more energy but the shortness of breath has continued. I honestly thought I was going to wind up in the ER this week, probably from the Canadian smoke, but my ER ptsd kept me from going. I was supposed to start on a different inhaler in June but thanks to a back order, insurance refusing to substitute, and CVS saying they had it but did not and blocking my perscription when I ask to have it released back to the original phamacy. It has been interesting. See the pulmonologists again tomorrow and oncologist Tuesday. Have a list of thing to ask. Is ibrance making my asthma worse. Is something else going on. My dad was a cigar smoker until I was 17. Maybe heart issues. I believe this is more than just mild anemia from Ibrance. Hopefully back to the gym later next week. My pharmacist filled it for me when I was there two weeks ago off one of my original substitution permissible perscriptions which supposedly my insurance company does allow.
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@brutersmom - Very sorry to read about your breathing problems. It's extra hard when you can't pinpoint a cause. I had scans a little more than a week ago, and the chest CT showed some new nodules and other things. I had also been experiencing some mild, infrequent, but definitely new and noticeable shortness of breath, that I wondered might be related to the Xeloda that I take. The take my onc has, and that I had also wondered about, is that it is residual inflammation, etc. from the RSV I had for about the whole month of April. I understand it should all gradually go away in time, but 3 months after the infection, I'm still dealing with the aftermath. Any chance that you had any sort of infection over the last several months?
I seemed to have missed this whole thread since last April. I might have stopped posting, because I was not exercising, due to the RSV, but then I don't know what happened after that. I would have still continued to read others' posts and experiences, even if I wasn't doing anything myself. This is the first post I've seen show up on the board in months, and yet it looks like people have been making regular posts. I never see it on the first couple of pages of the "current conversations". I assumed it probably just wasn't active anymore, but apparently I was wrong. Glad to see it back.
I do continue to walk, but since I've been on the Xeloda (and maybe because of the RSV "hangover"), I continue to not be able to do my old routine walk of about an hour or a little more up on and then around, a local hill. I now go for about 40 minutes on a good day, and it is just a loop around a flat sidewalked area a few blocks away. I had a little extra break from the Xeloda over the last two weeks, and I had gotten to where the 40 minute walk was extremely easy and I was happily bounding through it. Started the drug back up, and now I trudge and lumber through it, without nearly as much pleasure and enjoyment, but I guess it just is what it is (I actually don't like that phrase at all, but …).
Glad to see how so many are still up and at it and enjoying the summer and their exercise routines. Good to "see you all".
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Breathing problems do seem to be a side effect of many of our medications. Interestingly, I first started to have breathing issues in 2020 after a mild case of Covid that turned into long Covid. Years before my Stage IV diagnosis. I still have issues and plug along, as @threetree seems to do. My energy level is not what it was pre-Covid. Hard for me to know how much is caused by what!
Overall, I certainly feel much better since stopping the AIs and switching to tamoxifen.Ladies, I am thinking of you and praying we all have some good days. @brutersmom we have been having lots of fires out here in the western US. Smokiest summer since I moved here 9 years ago. Hope the Canadian fires die out soon in your area.
Hugs, Pam 💗
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@threetree. I had a cold in the spring. But this started ar the end of last summer and has continued to progress. Nothing new showed on my October or April scans. I make sure I am hydrated. I practice deep breathing to keep my muscles the developed scar tissue after radiation. I am pretty sure I had covid in Noverber of 2019 before it existed. I had fever, cold symptoms, and a complete loss of taste and smell. But of course it didn't exist until spring of 2020. I have been fine until the summer of 2025. The only other thing I had was a severe stomach bug around the time this started in July of 2025.
@livinlifenow. The smoke has stopped but not before I found myself in and out of a building for about an hour on a rainy Saturday showing a rental. Air quality was 189. Not good. Should have cancelled that day. I didnt because I thought the rain would clear the smoke. Instead it made the air denser.
Hopefully.my appointment with the pulmonologists will help me figure out what is going on.
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@brutersmom , could it be pneumonitis from the Ibrance? I got that from Verzenio and had to switch to xeloda.
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Aj I called the oncologist but they said no because I don't have a fever.
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Hi all, Well! Seems to be breathing issues week! I just had a thoracentesis 2 weeks ago due to increased pleural effusion since my PET in May. Unfortunately, I am not breathing well enough, getting breathless as soon as I hit a hill or stairs or doing anything with exertion. I had a PET last week (a baseline to use since I just started Truqap with Fulvestrant) and there was no note of increased effusion but I do think I need more fluid removed. Thankfully I see my MO this Tuesday to discuss the latest report. Of course, I am assuming my breathing issues are due to pleural effusion but hearing what you all are noting, it may be something else. Thankfully, the PETs say my lungs are clear, so there’s that. Time will tell!
I am not being as active as I need to be - the past 3-4 months have been difficult with the progression in my pluera, my brain and some lymph nodes. Add in 3 medication changes and breathing issues (2 thoracenteses in April) and gamma knife in early May (followed by bad dizziness). I need a calm settled period of time - hoping that will come now as I get used to Truqap and Fulvestrant. Starting my second week on Truqap and second month on Fulvestrant.You all keep me grounded and are my incentivizing crew. @brutersmom @threetree Keeping my fingers crossed that you find answers and relief. Keep in touch!! I will let you know what’s up with me but probably on a different thread. This thread should be for fitness news and support to keep us all moving forward!
ciao for now! xo juliana1
