Stage IV MBC Fitness
Comments
-
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.
3 -
@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".
2 -
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 💗
1 -
@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.
1 -
@brutersmom , could it be pneumonitis from the Ibrance? I got that from Verzenio and had to switch to xeloda.
1 -
Aj I called the oncologist but they said no because I don't have a fever.
2 -
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 juliana2 -
Eddiej, A pleural effusion is no fun. I had 3 thoracentisis and then it stopped. The pleura was my primary met site. Don't push exercise until it is cleared. Be active but know your limits. Hope the meds work quickly.
3 -
@brutersmom @eddiej @livinglifenow @threetree @aj You all are amazing to be on the exercise thread despite some daunting setbacks. I hope you are on a healing path now that will bring strength. I am thinking of you all. I use chatgpt as a coach and I had it analyze my health numbers, kept by my smart watch, for the past few years, and there was an obvious precipitous drop in all these measures when I was on chemo in late 2023. Very visible. Then I went into a recovery mode that brought my numbers back, not quite to their prior levels, but an obvious climb up. I know that numbers are only part of the story. For example, my vo2 max is below average, which is very weird since I have been walking 5-7 miles a day in preparation for a long hike I'm taking in August. Everything else is pretty good for an old person, my resting heart rate, etc. But I thought I'd share that for anyone else who might be into that kind of health monitoring.
3 -
I wear a samsung active. I use it for heart rate, tracking, and working out. I don't think the O2 monitor is very reliable because it has had me in the 70's when the pulse oxometer has me in the low 90's.
When I go to the gym I use a myzone. It shows on a wall screen With having chronic anemia from Ibrance it helps me pace myself.
3 -
I've never quite understood pleural effusion. They told me I had a very mild issue with it after I became stage 4 in 2023, and then they'd monitor it and it seemed to stay stable. Then last year sometime, even when I was still on the Verzenio and Fulvestrant, they said they weren't seeing it anymore. Now with the Xeloda, it seems to have become a complete non issue. They never did directly tie it to cancer, and said it was likely, but not necessarily. Oh well, now I've got that residual RSV trouble, and that does seem to affect my breathing, whereas the pleural effusion didn't. So many unknowns and unkowables!
2 -
@threetree Way too many unknowns, and let's hope science has more knowns in the near future.
3 -
Hey friends-glad to see our thread reactivated. I got back on my bike for the first time in a couple of years today and rode 6-7 miles. It was hard but felt good. I'm still nervous riding around cars but thought it better to try in rural Wisconsin that Chicago. I've mainly been doing walking, yoga and weights. Nothing spectacular but I've realized that doing a little is much better than doing nothing. I'm a lot easier on myself now after 10 years with this beast. My exercise is for me and me alone, to feel better and keep my body as functional as possible.
I had severe pleural effusion when I was diagnosed-it's what finally brought me in to a doctor. It cleared up after 6 months of Ibrance/Letrozole and a Pleurex catheter but my left lung is permanently damaged. I notice it especially when walking uphill.
Tough old Crow-where are you planning to hike this fall?
4 -
Chicagoan mine was in the right lung. Drs can't find a cause for my shortness of breath. They say there is not enough damage to match the symptoms. Are you able to descri.e how you feel when you walk hills?
1 -
@brutersmom If the hill is really steep-like a sand dune, I gasp for air and can only move very slowly. With normal hills, my breath gets short and I can feel my heart racing.
2 -
That pretty much describes how I feel. Hills stairs vacuuming etc. I only have minor damage. My symptoms don't match the damage. Next stop cardiologist.
4 -
@chicagoan @brutersmom Thats how I feel - just how Chicagoan described it. I was in a friend’s pool a couple of weeks ago and set off to swim to the other end and get a raft. After 3-4 strokes I realized I couldn’t breath and had to turn around immediately and get to a spot I could stand. I almost didn’t make it and my friend was about to come pull me in. That scared the bejesus out of me! I do not look sick so get away with a lot of denial. That episode was a clear indication that I am truly ill and a lot worse than I like to acknowledge. It scared my friend too. That was right before my last thora. But now I think I need another one… @brutersmom good luck with the cardiologist!
1 -
@eddiej Wow! That is a shock to one’s brain when something as simple as a few strokes in a pool makes one breathless. I am so sorry you are going through this. It is very frightening! Hoping for a solution soon.
Hugs, Pam 💗1 -
@eeddiej. I was like that when I had my pleural effusion. Pulse ox would read 99 but I was out of breath walking around the house. I was told not to do anything strenuous until mine resolved. Olease be careful. So frustrating. You don't feel bad until you try to do anything. Mine has been gone for 3.5 years.
The one thing I forgot to mention he pescribed a low dose of prednisone for 9 days to see if my symptoms improve. He did wonder if I have mild inflammation, enough to be chronic but not enough to show on a scan. Kinda like my cancer. It showed on my Guardant360 but nothing can be seen on scans. Also looking at exercise induced asthma.
2
