Short of breath

[SLOJIM]

On Orgovyx, Nubeqa and Megace for last three months. Completing 27 of 27 fractions of radiation tomorrow. I am short of breath most of the time. A walk up a flight of stairs leaves me gasping. I continue to workout including running (slower and shorter since radiation started), hiking and weights. Will start cycling again after radiation. I've been a runner and cyclist for 45+ years. I actually went to ER a couple of weeks ago to get checked for pulmonary embolism at the urging of my MO.

Is my shortness of breath to be expected, i.e. others experience the same thing and result of hormone therapy so I just need to deal with it? Is it possibly caused by the Megace? It is startling for someone who is very fit and active. Just wondering if it is the new normal?? For now, I am just pushing through it.

[Tall_Allen]

Reducing exercise during radiation is the opposite of what you should have done.

[SLOJIM in reply to Tall_Allen]

Thanks for reply. My only change is not cycling. I’m continuing to hike and run and added 3X per week weight circuit. Not running quite as far but daily steps at same level as before cancer.

[Abcsoup73]

Hi SLOJIM,

Have you recently had labs done? Both Orgovyx and Nubeqa can cause decreased hemoglobin levels, which, in turn, can result in shortness of breath. Glad to hear you do not have a pulmonary embolism!

[SLOJIM in reply to Abcsoup73]

thanks! Hemoglobin good. White blood cells a little low but not concerning to MO.

[Benkaymel]

I can only give you my own experience. Hormone therapy certainly causes fatigue which is addressed by resistance and cardiac exercise as you've been doing but when I had radiotherapy to a rib tumour, I initially experienced pain flare and much more fatigue/shortness of breath. I discussed this with my CNS team and they said that RT is effectively like having surgery and I should expect to need to back off from heavy exercise for at least a week and just concentrate on more gentle exercise such as slower walks. I found I could then gradually ramp my exercise routine back up as I recovered from the RT.

[SLOJIM in reply to Benkaymel]

Thank you. Comments are appreciated and align with my experiences so far.

[j-o-h-n]

I've been short of breath for a few years...... 86 years old and saw my cardiologist today to check me out................ at 6"1' and 250 lbs........ he told me I' too fat. (prick).....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 07/25/2023 7:14 PM DST

[London441]

Do you know your VO2 max? Do you do at least 1x/week of high intensity intervals to maintain/improve it? What is your maximum heart rate? Frequent long (45-60 min)cardio sessions at 60-70% of that should be easy enough to sustain. Comparing your current levels to previous should be discarded.

If your fitness has declined from lessening your activity during this important time it’s understandable. Increase the weight you lift if possible. See a cardiologist if you feel the need. Otherwise I would forget about what I used to be able to do and work from there.

[SLOJIM in reply to London441]

Thanks! I do not know my VO2 max but I wear an Apple watch and keep close tabs on heart rate. I typically run for an hour 3-4 times per week and started weight training about a month ago. I am coming around to the idea that I just have to accept that my runs will be slower and I just need to push through the shortness of breath/exhaustion. I am finding that I can establish a slower pace that allows me to continue running.

[London441 in reply to SLOJIM]

Your last sentence says it all. 1/2 the recipe for a healthy aging heart. The other half is the intense interval training, but it's not time equivalent. Only one session a week is needed, 30-45 minutes compared to your 3-4 hours of distance running.

Intense short intervals also require cojones, but if you can run that much they should still be working well. For this anyway😀

[jptss]

I run an average 7 miles a day 3 times a week with my wife pace 10.5 a mile old pace 8.50 a mile, just happy to do and I smile look around and enjoy, put a bowflex in the basement opposite my running days.Life is not the same my legs are like cement but as I go through it gets easier and I feel great, all I know is I'm not normal any more and trying to enjoy the new normal.

[SLOJIM in reply to jptss]

Thank you for your comments. I couldn't agree more that I need to reset my expectations. thanks for reminding me.

[Mgtd]

Here is my experience. Like you I continue to be active - hiking, resistance and watch diet. Since I hike for at least a hour everyday with my dogs I am in reasonable shape.

From my property border to the national forest entry requires a a step climb of 30 to 40 degrees. I recently notice I had to rest at the top with some shortness of breath. Not a problem or noticeable on the flats. Mentioned this to MO NP and they did blood work to check for anemia. None found. They said perhaps side effect of Lupron or after effects of recent radiation.

Pushing thru it and it appears to have improved. I have noticed that my energy level is down on Lupron and after radiation.

Yesterday someone at pickle ball asked if I was feeling OK. I said yes and their reply was your speed and quickness is noticeably changed over the last couple of months. This person had no idea of my cancer journey, etc.

So for us aging athletes time and cancer maybe slowing us down but keep putting one foot in front of the other.

PS I am at 7000’ MSL.

[SLOJIM in reply to Mgtd]

Thanks for your thoughts. I definitely need to recalibrate my fitness expectations but running slow is much better than not at all.

[Mgtd in reply to SLOJIM]

I totally agree.

[Daddyishealing]

Please check your hemoglobin and go to a hematological oncologist .my dad was dx with cll and no Dr found it but even at stage one he couldn't breath. Through research he was the one to figure out to get himself to the rt Dr bc all Drs told him tests and blood were all great . Best to be checked ,and I wish you the best . Sungulair mt help s bit along with having an inhaler in you until the actual problem is figured out. Good luck my friend

[SLOJIM in reply to Daddyishealing]

Thank you. I had annual physical recently and hemoglobin was in good shape. White blood cell count a bit low but that appears to be result of RT. If it continues now that RT complete I will look into the hematological oncologist (I didn't know that was a thing).

[Daddyishealing in reply to SLOJIM]

I didn't either until I had to ,but it's a great precaution,also wise to have one bc treatment can cause issues and they are best inclined to deal with if you find a good one. If anyone lives in my NJ I have recommendations ,but I'm beside my dad's hospice bed and my mind is blanking. I'm losing my dad ,but I'm going to be in the community fighting for early dx ,knowledge and a cure so ty my friend for giving me the chance to be of use

[TJGuy]

Yes ADT will affect you in many ways.

I felt like a man was standing on my chest, and I had a metal strap tight around my chest affecting my ability to breath.

You will lose 1/3 to 1/4 your strength, stairs will become difficult and leave you breathless.

You will lose some muscle mass, dispute continuing to exercise. You really have to make exercises your new full time job and this requires a lot of sleep.

So these are the effect of ADT, as long as your on ADT this is your new normal.

The radiation has short term effect of tiredness as well but that goes away in three to four months or so and you'll find yourself in the same state of fatigue, week ness, lack of stamina.

As far as cycling, if you're used to riding with groups, your speed will decrease, your ability to produce power will reduce greatly, your stamina is a thing of the past. There is a solution though to keep you in the game and riding your regular rides and friends.

You'll need to buy a EBike, there are EBikes that are like racer bikes, with long battery life, these will keep you in the game and enjoying what you used to do.

Coming off Lupron can take 6 months for your Testosterone to rise enough for you to begin riding your regular bike, you'll get better as your T rises and it may take a year of determined riding to get back to where you were when you went on ADT.

Buy a quality EBike and enjoy the new normal.

[SLOJIM in reply to TJGuy]

Ugh. I do greatly appreciate the detailed response and it helps me understand what I am feeling. Going to keep pushing through it now that I know it is "normal" . Back on the bike next week. Only going to ride gravel. I think it is time to stay off the rodes and be a bit safer.

[TJGuy in reply to SLOJIM]

Oh ya weight gain is a big side effect of ADT, you're going to feel tired and hungry all the time, and usually eating gives you energy. But now it adds fat and weight.Also EVERY muscle in your body gets weaker, so keep up the running if you can because extra weight and week muscles aren't a good combination. The knees, hips etc don't get supported like they used to. So keep as active as possible and keep ahead of that curve.

I think running is a a really good exercise for losing weight, better than cycling if you can.

Hopefully you're one of those people that even as you've aged just never gained weight no matter what you are or drank. If you are that will help you immensely.

Good luck.