my oncologist says it is not. When listening to my lungs she remarked about my smoking...and I told her ..."I never smoked"...and she said we assumed you did. Then she mentioned my latest Axumin Pet Scan had some kind of "marker" on both of my lungs. I've had this condition for a few months...I can walk and walk, but if I have to bend ...like placing paving stones like I have been doing lately...I am out of breath (literally) in 2 minutes. It then takes me a while to catch up and breath normally again. I look like I have COPD and just a couple of years ago I looked like a triathelete (almost). I guess blaming everything on Lupron is not the way to go...I should have been more proactive? Has anyone else had shortness of breath NOT from "he who cannot be named"...LOL. (Voldemort aka Cancer)
**I am scheduled for yet another Axumin Pet scan in 8 days. I guess this will be the deciding "blow",
John
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You are not alone...I had shortness of breath (SOB) , not chest pain, at one time and they evaluated me on a treadmill....nothing was revealing--EKG, stress thallium test, until.....They did a cardiac cath and found I had a 99% occlusion of my LAD--surgery soon to follow---It is worth seeing a pulmonologist (former long term smoker, asthma sufferer, etc) or if you have high cholesterol, obesity--a Cardiologist--you have been on zytiga and there are cardiac issues with that med...some things to think about...
not really obese...heart has been checking out good. Never smoked...except 2nd hand. No asthma. Hmmm...I guess the pet scan results might encourage a biopsy or a trip to my cardiologist. btw..I keep walking a couple of miles a day and gym 2 to 3 times a week.Staying very active. It's not adding up.
Good luck on your LAD, lad!!!! Close call, and don’t you think you have enough on your plate without going after a cardiac problem? Get another hobby, Fish!
My LAD--LIMA bypass was 8 years before my cancer...I did not even have an MI---God blessed me....I work out nearly every day---5K walk and lift weights...feel well...as for fishing, it is a wonderful hobby....relaxing, watching the water, communing with nature, the hook up when the fish hits, the struggle ....sitting with friends around the supper eating the catch....all good, my man...
Loss of breathe from bending forward can be related to a hiatus hernia. It is a rear in the diaphragm and stomach pulls thru the space . It is common for people who work out. Bench pressing causes a lot of it. Can also cause acid reflux._
seriously? that could cause shortness of breath? Now I'm curious...however, I haven't had diarrhea or constipation...the entire time I've been in treatment. I'm like a clock!
I actually researched and they actually list shortness of breath as a symptom of constipation and also of bloating. I have been feeling a little "bloated" on and off....lately. I'm going to try and watch what I eat and see if that helps. Xtandi (especially) it seems can cause all kinds of G.I. problems. ~~I've been lucky so far with only the bloating feeling.(along with, of course, the other non-G.I. side effects).
Thanks, though, this bloating may be an issue I can make better...and it might improve the breathing issue.
My husband had this with XTANDI and more. He only lasted about 6 weeks on it. The side effects were debilitating so his dr switched him to Zytiga. (Which also didn't work for him). He's doing great so far - 2 months into the new protocol with Dr. Bob @ Compassionate Onology in LA
Another great post. I too, have mystery bouts of SOB (on Lupron) ...being a former medic, I have a pulse oximeter and BP cuff (get them!) to trend whether i am poorly perfusing and there are deeper issues. So far, nothing I can prove - being from Colorado, it almost feels like the altitude sickness and HAPE (high altitude pulmonary edema) I experienced when I was younger. It’s concerning, alright. I’ll be interested to see if this thread takes off and what others say.
I have been on Lupron for 1.75 years. At times, I have experienced unexplained periods of severe shortness of breath ('SOB"). Dyspena is listed as a side effect. My MO and my Pulmonologist are my Drs that recognize this symptom.
I am in shape. At times, I find it difficult to walk up a flight of stairs or up an incline. The SOB sets in about 3 weeks after a shot. I get injections every 90 days. In a few more weeks, the symptoms will abate but at the moment they effect my QOL.
This condition is very frustrating.
I never smoked. Historically, I completed high intensity workouts.
Hey Lupron Zytiga...I guess I am Lupron Xtandi...LOL.
well it's encouraging to know that I am not the only one with SOB. My doctor looked at me like I was a S.O.B. when I mentioned it. He and his PA do NOT like me having any side effects....if I mention things they think I have made them up (that's the impression I get, anyway).
I do notice mine is worse at times...like in waves. I just did a "shot of the Lupron" just 5 days ago ~~been feeling exhausted in waves...but also full of energy (in waves). Never know how long they'll last.
Screwing with hormones...REALLY screws with your whole body/spirit/soul/mind....your everything.
Just saw my Cardiologist yesterday. Perfect timing. Yesterday morning my SOB returned. My cardio function is perfectly fine. When these symptoms first appeared we were both worried but now we both are confident that this is a side effect of the Lupron.
My history with PC is interesting.
My PSA rose over 4 when I was 47. Over the next 10 years my PSA rose in a stair step pattern to 9.5. It was the 4th random biopsy (12/2013) that discovered a low volume Pin and Gleason 3+3 in a couple of cores.
At 57, I didn't want to have a radical procedure. I changed urologists. I was able to get a targeted fusion biopsy from a 3T Tesla MRI. There were a couple of areas that came back PYRAD 3. Targeted biopsies into these areas confirmed low volume PIN, 3+3 and in a random biopsy, a very low area of Gleason 7 (4+3). This area did not image on the 3T Tesla MRI.
My decision was to wait 6 months and repeat the targeted biopsy. When repeated the Gleason 7 area imaged. I new I needed treatment.
In 12/14, I had a laser focal ablation. Initially, the procedure looked successful. 6 months later the PYRAD'S scores were 1. The decision was to wait a year and re-image.
this is different than "fatigue". I feel that without doing anything some times. It sucks.
** This is about just barely doing anything and being "out of breath"....and it takes sitting and doing deep breathing and relaxing for a while for it to normalize again. It's very scary.
Just talked to the wife (also former medic) who notes that it almost sounds like transient PAH (pulmonary hypertension). She saw it years ago at the VA with folks with thyroid issues....i.e., hormone stressed patients. We are nothing if not hormone stressed. Or, she said, maybe you guys have straight up PAH and it doesn’t show in your systemic BP or peripheral edema like swelling of the feet....yet. She’s a gem...my realist angel.
I had the same thing happen to me but the shortness of breath came and went. My family Dr fixed it with a .25 mg Zanex. Anxiety. Hope it’s that easy for you. I thought I was dying.
Don't worry be Happy...I get shortness of breath too every now and then and a little muscle tension on my left chest. Got it checked with ECG and report came up 'normal'. Doc says it maybe just anxiety or lack of sleep and rest. Prescribed me with muscle relaxants and after resting a while and napping, I'm back to normal.
Don't blame cancer or Voldemort....you have the marks of The Blood....what Gator Blood giveth it taketh away.....the x's on your lungs are a sign of the Gator...avoid all bodies of water to buy some time until Gustave pays you a visit. You can blame Nalakrats for this. The pic below is one of the last guys Nalakrats put on Gator Blood
With lupron your Blood count will be low, get your blood work done. With low Testosterone your blood count will follow. I was terribly tired while taking lupron! This is one possibility!
if u don't smoke which u said u do. if your not ovdr wt then quess what is most likely if its been a long time u smoke u probably have C.O.P.D. which as u get older and continue it will get worst.
Gonna weigh in here. I have been on Xtandi for 2 years and Lupron even longer. The side effects are no fun. When I bend over and come up I get really lightheaded and dizzy. When I’m laying down and get up I need to be careful and give it a minute. I Get out of breathe very easily. If I go up a flight of stairs I get very winded very quickly. If I go to the gym and start very slowly and work my way up it’s better. But going quickly from being still to exursion makes me winded immediately.
Not sure if there is a correlation but a month after my husband started Erleada (apalutamide) coughing and breathlessness began. Onc stopped the drug and plans are to reintroduce it gradually. My husband has underlying cardiac disease and the concern is that Erleada has some negative effect on the heart. BTW he has been on Lupron for years without side effect of coughing.
I have been on Lupron for 2 years. Xtandi for 6 months. The shortness of breath only just recently started. I'm thinking the "fun" takes a while to kick in.
Yes. On Xtandi and Elegard now , feels like I can’t cant catch my breath most of the time , I blame the Xtandi, Shoveled a bunch of snow the other day and had to stop every few minutes to catch my breath. Hate meds but still alive 😀
I had shortness of breath and diagnostic cardiac cath at 55 after initial trestment. Not a heart problem and cardiologist referred me to pulmonologist who identified and solved the problem. I had done ultramarathon or two prior to initial pc treatment st age 53
For my two cents worth... I've had shortness of breath before Pca and have it now while taking hormones. I sometimes get dizzy from bending over and lifting my head suddenly. It's that blood rushing back to your head that does that (I guess).
However, I still can blow up my blow up doll without passing out. But I will admit I do have shortness of breath when having sex with Dolly (she's such a terror).
I do not know why you have shortness of breath but I have the same problem. I was on Eligard for 6 1/2 years and I no longer am on cancer treatment. I read the other suggestions and in my case it was low RBC (9.3). After I stopped Eligard I had kidney problems stage 4. They gave me 5 infusions of iron, then shots of Procrit ( a kidney hormone that tells your bone marrow to release RBC). I get Procrit every 3 weeks and my RBC is 11.6 now and my shortness of breath has stopped. I also use a CPAP machine because I snore at night and now my oxygen levels are 97%. I had to have a stint put into my heart which makes my heart work much better. Good luck finding out the problem!
My husband had shortness of breath, plus a general overall not feeling well on Xtandi. They took him off of it for 3 weeks, and all the symptoms he had been having disappeared. He said he hadn't felt that good in a long time! He is back on it, at 2 pills a day instead of 4. We'll see what his PSA count is in a couple of weeks at this dosage.
Thought it was just the 50# of fat I have added in the past 2 years, but SoB is becoming more prevalent lately!!!
And Shortness of Breath is a Son of a Bitch too!!!
I got it really bad today caring cases of water up the stairs. Felt like I was suffocating!!!!! F*&$ing scary!!!! Ended up taking a .05mg Lorazepan hoping it was an anxiety attack. Going out in the cold fresh air then sitting down helped! (WtF, hoping it was anxiety ??????? what have I become?!!!!)! As it settled down, I searched on line then seaked out this post!!!!
Prior to my coming here, I look else where on the web and found that there is about a 12.5 to 25% chance of getting COPD symtoms if you have been on Eligard / Lupron for >/=2 years.
Stopped looking after I found the one site then came here!!! Will look further after my nap!!!!
So yes.....shortness of breath is a well known sideeffect of ADT drugs. If it is full blown COPD is another story, but obviously possible!!!
Before today, I’d get winded but easily without chest pain. I have had a quadrupal bypass (10 years ago (8 years prior to PCa dx.)) so I know the cardiac SoB symptoms and was cleared by my cardiologist Nov 13, 2018.
I’m very interrested in seeing other comments here!!!
Side note, when I complained about lack of sleep, they decided I have sleep apnea so I have a Pulmonary Dr. just waiting to take some of my money. to check this out.......so I got that going for me.....which is nice!!!!!!
I feel like I am doing a little better with it....it's only when I'm bending a lot while working. Was installing pavers in a small patio/walkway area....that it was the worst.
My husband had shortness of breath on XTANDI - and extreme weakness - i.e. so weak he went from strong and healthy to needing a walker at home. His vertigo was so bad he could hardly stand up. His MO at the time would tell him to go exercise and would feel better!!! He lasted about 6 weeks and then stopped -and went back to normal.
I'm still "tolerating" it...but it sucks..I do feel a bit dizzy at times and definitely weak....I keep hearing people say you "feel better if you work out"...but that does not seem to be the case with me....I STILL work out...walk about 4 miles (total) per day 1 in morning /1 in later afternoon...but when I'm feeling exhausted (unplugged I call it) there's nothing that makes me feel better. Laying down and sleeping feels good...but it's not even very "refreshing".
what did you husband switch to after he had to stop Xtandi? I'm getting worried that I will be at that point in a few months.
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Axumin PET scan with undetectable PSA
Axumin, effective at a low PSA
Zytiga failed now xtandi. PSA rise after only a few short months from 1.5 to 0.08 now 0.4. Moving on up 
PSA Increase from 11.7 to 34.8 in 2018. Two Axumin scans negative for recurring prostate cancer.
