Shortness of Breath

[genealogy74]

I have been on Ibrance and fulvestrant for almost three years with minimal side effects. However, I am constantly short of breath. A recent lung function test showed that my lung function is normal. However, I am still short of breath. I noticed by RBC is consistently below normal which is a known side effect. Is anyone else experiencing this?

[Teddypeppalola]

I am also on Ibrance & Letrozole I have had shortness of breath, walking up stairs, making beds etc I put it down to the fact I have metastasis in my chest wall but after reading all your comments I guess it could be Ibrance! Sending love to you all xx

[Lynn-in-California in reply to Teddypeppalola]

I am 64 and overwight and I have been stable on 125 mg. Ibrance plus 2.5 mg. Letrozole for over eight years. I, too, get breathless with exertion. I have always had extremely low red and white blood cells on this regimen, but the meds work, so I am grateful to be on the medication. I have been on the same meds and same dosages since 2016. I have a very smart oncologist and I trust his clinical judgment. He is fine with my terribly low blood counts. I can walk slowly and go marketing and such, but I just completely avoid intentional exertion and exercise. Even showering and shampooing can make me breathless, so I pace myself. I have diffuse lung mets and I've also had a small pulmonary embolism, plus coccidiomycosis (Valley Fever), a fungal infection in my lungs. I also tend to have low blood pressure. Basically, I'm used to the breathlessness. I think my very low red blood cell counts for sure contribute to breathlessness. Luckily, I am retired so I can take it easy.

WBC + RBC

[Liessie2014 in reply to Lynn-in-California]

Wow, that is so good , 8 years !! Thankyou for sharing , you have made my day, 😄l am on the same meds as you, I have lung Mets ,I am overweight and I also don’t exercise much , except for slow walking, as I get out of breath easy , I generally feel ok , I do get tired more often , I try not to worry about things like , housework , feeling like I should be doing more , it’s hard to tell myself that I don’t need to be organised and up and dressed early every day I , have come to terms with the fact that I don’t have the same energy as I used to , and I should rest when I need to , I do feel lucky that I have had almost 4 years on the same meds , with not too many side effects, when I was first diagnosed , I felt so down , I did get help with my depression , and now I feel pretty good ❤️

[Liessie2014 in reply to Liessie2014]

forgot to say , I am 64 too

[genealogy74 in reply to Lynn-in-California]

Thanks for your response. What you describe seems to be pretty much the same as what I experience. However, this morning I'm a little worse than when I posted yesterday. I'm one of those people who has several co-morbities -- one being heart failure. I was hospitalized with several blood clots in my lungs and heart failure three years ago. The main symptom was shortness of breath. For some reason, it didn't occur to me that it could be that. I hate that it's Labor Day. The ER is not the best place to go today.

[Liessie2014 in reply to genealogy74]

Aww , you really have had a tough time , bless you , I do hope you feel better soon ❤️

[Artesa]

If you haven't notified your oncologist then do that because even an initial chest xray can rule out if you have a pleural effusion or fluid in the lining of the lung. That can be easily drained and treated. They might order a CT scan to determine if there's something new. But you should not be walking around doing usual activities and experiencing shortness of breath.

[troutgal]

genealogy74, followers and repliers: I rarely post and focus on those in a similar situation to mine. Well, your post met all requirements, so here goes: I am 76, overweight and retired. Been on Ibrance, Fulvestrant and Zometa since early 2018 following MBC diagnosis - Mets to BONES "screaming breast cancer" (comment by pathology), Liver, Lungs (original BC diagnosis 2006). Ibrance - was on 125 21 days on, 7 days off; switched about a year ago to 14 days on 14 days off (to give me some relief from the severe fatigue) , all else the same. Appts for checkup, bloodwork, shots every 28 days. On that day start the 14 day pill routine, get shots. This routine is working very well. No longer golfing or biking but still walking and flyfishing (I no longer put on my waders and get in the river, but have a guide/flat bottom river boat in Grayling Michigan area (I'm from Ohio, been going to Grayling at least once a year for over 30 years). NOW, to other side effects: Fatigue is ever-present; shortness of breath sometimes. I get my breath back fairly quickly. Often walk the neighborhood but am able to sit on the front porches of neighbors in my senior condo development. My long-time mantra is that "I am GPS-ing it today" meaning that Grace will enable me to Pace and Space my day so I can do what I can to make everyday a Good Day. Love and encouragement to all.

[genealogy74 in reply to troutgal]

Thank you, troutgal. You are correct in our similarities. I am an Ohio girl (75), overweight, no mets to bones (thankfully), but having a lot of fatigue. You are an inspiration.

[Totheriver]

my rbc is constantly a little low too but I can’t say I am out of breath. Hope this gets better for you,

[troutgal]

Oops, forgot Big side effect: always present back /shoulder issues ranging from discomfort to severe pain currently addressed by OTC Tylenol and/or Prescription pain meds. I just took laundry out of dryer and the discomfort flared. Lol. Also, had stroke (didn't know), aortic heart Valve replaced, and chronic kidney disease. The fact that I forgot to mention these things tell me they don't rule my daily life!

[genealogy74 in reply to troutgal]

OMG - I recently suffered an acute episode of tendonitis/bursitis. They gave me a shot of cortisone and I'm doing PT. I also have back/ and shoulder pains and I had my aortic valve replaced in May of 2023. Amazing similarities.

[fancydog]

Have you had scans since the SOB started? I have been on Faslodex only for several years but started having a cough and getting SOB some days, CT showed ground-glass opacities which just mean congestion or inflammation in left upper lobe of lungs and I was started on a steroid based inhaler which is helping.

[genealogy74 in reply to fancydog]

I had scans four months ago that were clear. Next ones scheduled for early Nov. I also had ground-glass opacities that cleared (about a year ago) with antibiotics.

[Beryl71]

Interesting, I'm on same meds and am same age. I struggle with hills and stairs but am fine on the flat. I thought it was the after effects of the lung fluid I had when diagnosed. Oncologist is happy with my bloods and activity level.

[Dragonfly2]

yes, being shor5 of breath is a symptom of these drugs..not enough RBC to deliver oxygen t9 body…take deep slow breaths with frequ3nt stops. That really helps😍

[Corrina97]

I'm on Ribociclib fulverstrant and denusumab. Terribly breathless now.used tobe just when walking uphill but now also whe n I'm walking on the flat. Mets in lungs,nodules blocking airways. Used to enjoy long walks x

[RNwithMBCsince2013]

I had gradually increasing intermittent SOB several years ago...

I got a better pulmonologist who listened instead of dismissing me...

He did every test...I had forgotten about the VQ scan...ventilation Perfusion scan....it finally showed all those scattered tiny clots in my lungs....most likely from my port....

My port never gave good blood return....

I didn't tell my doctor to order a port dye study...

You see ports do grow fibrin on them...classic symptom is not giving blood return...

A port dye study done at radiology ....they inject xray dye to see if there is fibrin sheath....in my dept...every person that came in for port dye study...came back for 3 hr tpa infusion....a low dose...i think it was just 2 mg.....that was like draino....cleaning off the port...

I had to endure this SOB over a year...I had stupid doctors....they would just say...you have anxiety....its in your head...etc etc....

But that's just how the us healthcare system is.