I am a black American man with Stage IV disease. I have had pelvic floor, nodes and seminal vesicle External beam radiation then Brachytherapy radiation to prostate. I am 1 1/2 years into ADT ( lupron, abiraterone, prednisone). I feel bloated and uncomfortable in the evenings especially (gluten-free diet), some difficulty at times getting a full breath, and clear proximal girdle muscle weakness, and a strange severe right leg pain at the the distal thigh, above the knee, that is sharp, focal, randomly intermittent that lasts less than 5 sec seconds. The severity of the leg pain has decreased in the last 4-6 weeks, but the frequency has increased.
And did I mention the hot flashes are worse and more frequent.
I know it’s like a lot of little things but I just don’t feel right. I walk every day. I golf regularly( but I have to take a cart) My labs are good except persistent mild Creatinine Kinase elevation ( I had a moderate bout of rhabdomyelitis)
Am I alone in these troublesome physical problems? Anyone with some insight?
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JayJinxed8112
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I have one critical bit of advice. Weight training to every muscle . Minimum 3 days a week an hour a day. Preferably with a trainer. If you can’t afford one at least go a couple of time so you learn proper form. Without weight training your muscles turn to mush. So many here will tell you they feel pretty good if they weight train. I do and I feel great. I hate it every time but I push myself DO IT!
That's good you're out and about. Lots of over zealous exercisers on the forum. Don't get discouraged. We're all different, as I'm sure you know. Do what you can every day and increase what you can every couple of weeks, before you know it you'll be driving 300yds.
This was me last month, I walk every day also, but I started jogging a little, VERY LITTLE and it made all the difference , yesterday in the heat the longest I jogged was probable less than 70 yards , I did that about 5 or 6 times stopped in the shade a couple of times to catch my breath , I walk about 15 minutes before I do it so the hearts warmed up
I'm sure I look like a fool
I've been doing this about 3 times a week and just walk the other days
You are not doing limited running. You are doing interval training. Next time try walking first, run/jog your 70 yards and the continue walking another 70 yards. Repeat the process. You may need to rest but that is OK. Your stamina will slowly improve.
Also pick something in the distance that is your finish line. This keeps your head up and keeps you moving forward.
you are not alone brother, nearly everyone on heavy ADT experiences mild to wild SEs. This strictly anecdotal and IMHO. The majority of guys have few SEs.
Roughly speaking , in my opinion, ….. on a sliding scale of 1 to 10 …. the SEs you are mentioning are someplace between a 3 and a 5 or less. A lot of us have all or nearly all of those SEs or a much smaller percentage much more ( like me , I’m a 13 on the ADT scale and in a ADT wheelchair ) . Like the guys have been saying, exercise seems to be the consensus for improving your lot. Staying busy outdoors, traveling, coasting, dinning running, walking etc. seems to help a large number of us focus on other things. If your symptoms get to a place where they are irritating too much or hurting more, …asking your pcp or oncologist for lite pain meds ( starting with prescription NSAIDs ) and maybe Xanax for muscle relaxation and mood elevation are worth considering as well, IMHO.
As always, talk this over with your medical staff. Your oncologist and especially your pcp will be able to help you clear this up a lot.
I agree about the value of exercise. I walk and lift regularly, but even so some of the SE's sneak in and screw with me, particularly hot flashes, occasional shortness of breath and foggy thinking in the AM. I'm working on trying to accept that this is my new normal, but I'm not happy about it. What I am happy about is that for the present, my cancer is not progressing!
Just guessing on this...but resistance training of any sort might help many men who are reluctant about weightlifting in a gym, or at home. I've read that, if you can do them, pushups are the numero uno way to involve the most major muscle groups....also just to day read about "planks?......holding yourself at the up position of a pushup. For weaklings like me, can start by holding edge of a table, extending your legs backward, and do pushups from that position...as sets become easier and easier, move legs/feet backwards even more.......when you'vemaxed out in that postion, then go to regular men's pushups.......and no shame in including "womens' " pushups as part of the progression to full pushups. Squats might also be good......and yes the bands I'm sure. as we are all losing muscle with age, this training is good for evryone, not just the PCa afflicted!!!!!
Thanks for clueing me/us as to a new potential problem, re rhabdomyelitis. I will now Google!!!!
comparto contigo los efectos secundarios pues tengo el mismo tratamiento . Llevo más de un año con adt, abiraterona y prednisona . Desde el comienzo he hecho cardio en el gym, pero he seguido perdiendo masa muscular y ganando grasa . Recientemente he empezado con ejercicios de fuerza y natación y he mejorado bastante a nivel muscular , recuperando parte de lo perdido . Así que te aconsejo como dicen los compañeros ejercicios de fuerza y si puedes natación
I am a type A and bore easily , that said I mix up my exercise. I jog my dog twice a day for about 3/4 of a mile, rain or not. I do not count this as exercise. I have a Peloton Bike, and Row machine Love the interaction . Average 4 days a week. Some weeks all 7 days others 3. Just depends. I have a full gym and lift every muscle group and since it is in my residence I will run through and do a set just to do one. I stay active most days and feel great. Also trail bike and row a skiff. I have been on ADT since 2016, Radiation, Lu-177 five infusions over two rounds in India, and back on Xtandi. I still fly an Alaskan Bush plane...Look ..... if worry could fix it then do it ....we all do to a certain extent but I keep mine at a minimum. I tell myself this shit we have ,and I adopted this from a brother who was SF " It don't mean nothing" look at your options and move forward. If you do not like what they tell you search as you are now.....do not sit on your ass and keep you weight down like you were a high school stud...Remember, this disease has the potential to snuff you out, but potential in my book means " It is not shit yet" so go and get you some, kick ass and fight like hell, have fun , enjoy each day and this group cares. I am not on this site much, but these amigos will be here for you . Not saying any of us are right or wrong that is for you to decide. Results are what you aim for.......Blue Skies , Sky King and Penny ( woof)
You are not alone. Your case is almost exactly the same as mine. My muscle pains are transient. I do eat a Mediterranean diet. I eat more vegetable and proteins and have eliminated most complex carbs. This has reduced the bloating. Like you I play a lot of golf. I have begun using a handicap flag so I could play a full round. I am afraid this is the price we have to pay to defeat our cancer. Hopefully someday we will feel like our old selves again.
Every person is different so you can't generalize. You will adapt to some side effects but not others. I think there are potential solutions to hot flashes but I haven't read all the replies here.
Personally I do not agree with Schwah and others who advise to do a lot of weight training particularly because, unless you have a background in that or work with someone, you're more likely to hurt yourself than to do any good. But that's up to you. It's certainly not going to make the cancer worse and you might benefit.
I started estradiol patches 6 weeks ago and now have much fewer hot flashes. Went from 10 a day to 5 and at night from 4 at night to almost none. I have been taking gabapentin for 8 months which reduced daily from 16 to 10 and nightly from 8 to 4. I’ve been on Orgovyx for 9 months and will be 80 in August. Initial prostatectomy in 2013, then salvage radiation in 2017.
Best Wishes for your future treatment, progress and health!
You mentioned rhabdomyolysis and in your profile that you stopped your statin, which can cause rhabdomyolysis in some people (like me). Have you tried supplementing with ubiquinol? When I got the leg pains from my first statin, my doctor switched me to another and also told me to start taking ubiquinol/CoQ10, no leg pains since. Don't know what helped, the statin switch (from Lipitor to Crestor) or ubquinol, but one or both tactics might help with the leg pains, and ubiquinol is often recommended for older people whose bodies are often lower in mitochondria energy output. I take 300mg daily.
I have no insight except where we both have a share in PC yet suffer to varying degrees so differently. If praying for you gets it done then I will be including you in my prayers right now. If cheering for you and yours and your medical team thru and thru then I’m doing that too and I hope the many of us are doing the same. I don’t have an answer to your dilemma but perhaps someone here will read on it and offer some ideas from exposure and experience. My prayers brother begin now.
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