I used to be a fairly hardcore runner. I averaged about 45 miles/week, more when marathon training. I was into racing. I've run 15 full marathons and countless 5ks, 10ks, etc. It was a huge part of my life. While on Lupron I've found that running is difficult. My legs feel extremely heavy. It's not really pain. They just feel like concrete. I came off Lupron in August and was hoping that my T level would start to come up and running would become easier. This is what happened the first time I came off Lupron. This time the Lupron side effects seems to be hanging on longer. My T level was 11 at my last MO appt in October and my legs are feeling as heavy as they have been. No improvement at all. It's depressing for me and, frankly, it's really pissing me off!
I realize I'm mainly venting but does anyone have any ideas as to something that might help?
Thanks.
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fireandice123
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That sounds frustrating. I am just off Lupron and hoping I am off long enough to feel some gains. My strength (cycling) always wains this time of year for various reasons. I don't have any specific suggestions but have you considering more strength training with weights and intervals?
I think Nalakratz already implied this but I'd like to reinforce his suggestion by explicitly stating that you should be having regular T and PSA tests so that, if your cancer takes off, you can take action quickly to keep it from getting out of control.
When you say your T level is 11 is that in nmol/L or ng/dL? If the former, it is the low side of normal. If the latter, it is still at castration levels.
It is typical for vacations to be increasingly shorter over time.
You can talk to your oncologist about using clomid or HCG to stimulate your natural production of testosterone during your vacation. It could be dangerous to use testosterone (transdermal or injections) as it may stimulate your sleeping metastases. Imaging of metastases is important to track progression - you cannot rely on PSA because you have treated PSA.
Having been on zoladex (Lupron equivalent) for 7 years now plus abiraterone for over 5 I have gradually felt it harder to get the speed and muscle I had before . I still run though , marathons and ultra marathons of 150 miles . Yes it’s harder , yes I am slower and muscle seems to never stick even with 5 gym sessions a week .I am not where you are as I am T4 and defying the odds but i stopped worrying about what I can’t do so well and focus on the fact I still can run , just differently . I find a lot of the tiredness is mental rather than physical so can still force myself to keep going . Admittedly I now crash a bit once I have stopped but I have learnt to get into a zone of running that is slower but longer lasting .
I guess what I am saying is maybe embrace where you are , adjust your mindset (and speed) and maybe consider distance more than pace . Hope that does not sound arrogant .
If you think it will help then feel free . I have also written a book Dead Man Running , shortly available in the USA but in the UK now both on Amazon . It may help people who are thinking what’s the point . Have a great day
Yeah, I’ve come to the conclusion I need to work my legs as well. Given how much I was running I never thought I needed to before. I was actually worried about building my legs up too much. Big legs, even muscular legs, can work against endurance runners.
Excellent! You’re being smart. I was a talented distance runner when younger but gave it up for just that reason-age induced leg muscle loss became too much to want to handle. And that was years before Lupron.
Lifting is more important when we’re old anyway. I’d definitely mix it up if I were you, that’s what I do.
Seriously, you could do a lot worse than to alternate running and leg work only.
Until you get tired of your skinny upper body that is😀
Runner here as well, and I found after ADT/radiation that I was slightly anemic, upped my intake of beef/chicken liver, sauerkraut, and added some moderate B-12 supplements to help build back RBC’s.
So, diet change increased your RBC? My oncologist suggested that my low RBC is side effect of lupron but is not diet related. So, diet change would not help. However, my pcp found that I have low iron and so am on low dose of iron supplement for six months. I am mostly vegetarian so beef/chicken livers are not an option for me. My low RBC definitely affects my ability in tennis and other aerobic exercise.
Yes, I can’t be sure if diet alone did it, but I was able to raise my RBC count from 3.8 to 4.2. You may need to supplement with B-12 as a vegetarian. Be careful with iron supplements— they have an association with increased cardiac risk.
I think weight training is your answer. ADT wastes muscle mass. No amount of running will help that. I’d do weight trading for an hour three days a week. Lower weights with 3-4 sets to exhaustion to all muscle groups (including legs) I’ve worked hard at it and I feel great. Actually increased muscle mass with no T.
Have you considered PT? Am also having heavy legs with difficulty walking. Just started PT yesterday. So far Therapist gave me stretching exercises to do at home daily. Will be going 2x per week to their office.
5 1/2 years ago my T went down to 12 then to 8 and stayed there until well after ADT. Now I am happy that I trudged through it as T went up to 185, 230 and 280 to 320 -- but my PSA dropped to .002 and is still insignificant. I was as tired each morning upon waking as I was at going to bed. I was not as active as you but always walked 2 miles a day and worked out on various machines at LA Fitness. I continued to go each day and forced myself to walk at least a slow mile or more if I could.The big thing is, I am now healthy and alive. Don't know what I would've been without radiation and ADT, but possibly having the APC eating away at me, if alive.
I can testify that being pissed off is worth it looking at the Big Picture.
Before my cancer treatment (radiation and meds), I ran ultramarathons. That was in 2006. I had to give up running--but I cycle and find it fulfilling. With today's ebikes, you can even get help when needed. I also took up golf. Many times I wish I could get back into running, but my back and hips won't let me. Do what you can and enjoy it.
Hey, sounds familiar. Similar background too. What I have found, is to learn how to run again (well kind of). 8 min miles were so damn slow 6 yrs ago, and 10 min miles slow 4 years ago. But since diagnosis, and treatment, I have rethought the whole thing. My current routine is fast walks, with 10-30 sec of running often. Able to do 5-10 miles easily with this daily. Which is my foothold on handling all this. I realize this is a new me not the one I think I was. Embracing it. Like Kevin said, rarely am I exhausted physically, it would be mental, and getting over that, is just getting out and moving. Good luck, man. Just put the shoes on and go for it.
That’s a good idea. I can walk with no problems. Walk/run is better than doing nothing. It’s what I can do right now. I can do that while trying get myself back to running.
Lowering my expectations about what I’m able to do in general and embracing the new me is something I need to do. I’m having trouble with that. I can be stubborn about what I see as giving in to my illness. I also need to realistic.
yep. It is a challenge but always setting mew goals. This is from a guy who used to run 6 min miles for a marathon! Low RBC doesn't help. Since my last little bump in the road just tried to do 16 min miles, mostly walk. Then 15 min miles, with some shuffles. Now down to around 13 min miles, working toward 12.... . But I am happy just to get out there and do it! It will work for you!!
I've always admired a *runner's* ability to knock off fast miles that are seemingly done without much effort even though the reality is far from the thought.
I was never able to run or jog for any appreciable distance due to bowed legs and arthritis. In January of 2010 (age 59.5) my wife and I walked our 1st 5K during WDW's (Walt Disney World) Marathon Weekend. At Marathon Weekend in 2011 we walked the 5K on Friday morning, the Half Marathon on Saturday morning and Sunday morning using Danny Dreyer's Chi Walking method I walked the Full Marathon in 4:56:28 including 1 rest stop and 1 stop needed to check bleeding toes. My best Chi Walking mile pace is 8:36. I was diagnosed in March of 2015 and that January's WDW Marathon Weekend I walked the new Dopey consisting of 5K, 10K, Half Marathon and Full Marathon then Monday another Half Marathon, on Tuesday a 10K and Wednesday on Disney's Castaway Cay the Inaugural Marathon Weekend CC 5K.
Bicycling is my GO TO exercise now since the knees are bone on bone and just simple walking causes pain. Tonight I will be going out to ride my final *1st day in the month 100 miler* that I began doing in January. Hoping to complete the distance but even the rotation of the cranks now results in some pain so I will take whatever my body allows.
I lost nearly all of my skeletal muscle on ADT. Sarcopenia. It would be good to get a baseline assessment. A DEXA scan can not only assess bone density, but also an index of appendicular skeletal muscle mass (ASMM and index). That is one measure of sarcopenia. Another is strength, best objectively measured by a physical therapist on a leg extension/ flexion dynamometer. That will confirm it and make a basis for discussion of cyclic testosterone replacement therapy (modified BAT) with your MO or other doctors. It has been like magic for my strength and energy and my PSA has remained steady so far.
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. But I am happy just to get out there and do it! It will work for you!!
Cancer good, legs bad
Leg Pain while on Lupron and Zynga
Another Xtandi question -- Vacation time?
Swollen Legs After Chemo
