Hi Everyone I have been dealing with stage 4 Prostate cancer for about 7 years. I have recently started having problems walking. My legs tingle and I can not stand on my toes. Walking is becoming more and more difficult. I have a big problem with steps. Has anyone else had these problems.
I take 2 Erleada (60mg) at night.
I have a hormone shoot ever 6 months.
I did Chemo and Provenge after being diagnosed and did radiation about 7 months ago.
Thanks for any info.
I’m sorry you’re having these issues. My guy struggled with chemo related neuropathy and gained some mobility back through physical therapy. They came to the house and it made a real difference for awhile. I urge you to do all you can to keep moving for as long as you are able. Even if you need to start with chair exercises.
Talk to your doctors and see what they suggest. His doctors were pushing hospice way before he was ready so there was some resistance to ordering him physical therapy. Once he finally started, he saw real improvement and managed to keep getting approved for more weeks because of this improvement.
He was still participating in physical therapy one week before his passing. It helped me to be able to keep him at home by keeping him in as good of shape as was humanly possible.
Best wishes to you on your journey.
thank you so much for your reply. I am sorry for your loss. I will try to get to a physical therapist.
so kind of you to continue to help all of us here
yea I do. I have multiple met damage areas in my lower spine, two seriously met damaged knees and many lower bones with met joint damage in both feet … that’s just the lower spine down. My main cause of mobility disability , tho, is my ADT treatment. I’m one of the small percentage of ADT guys that develop “ adt zombie “ . When I stand, I’m hunched over, can’t stand up straight , my legs are disabled to the point that I have to mostly shuffle my feet to get around. I get out of breath quickly … pulse climbs to 115bpm and blood pressure climbs from 137/76 to 215/110 nearly instantly. I can only walk laboriously for about 30 feet max. ( I use wheeled chairs indoors and a electric etrike for out of doors , parks etc. ). The adt I receive is Lupron Xanax and Zometa. In some people , a small percentage 8%-12% supposedly ( all this anecdotal btw ) develop severe painful stiffness in their long lower back muscles and even worse in their long leg muscles. If I stopped taking the ADT , supposedly in a few weeks or so, my walking would return to fairly normal. I have hefty peripheral nerve damage in both feet … feels like I’m wearing an extra heavy pair of thick wool socks but its not painful. It is tingly and feels freaky- odd when touched or rubbed … but , so far, isn’t debilitating. The lower body stiffness thing can be very painful at times. Additionally, I have drug induced high bg … the adt drugs run my bg up something awful and it’s a constant fight to keep it mid 150s to 200. High bg has probably been an additional contributor to my foot and lower leg neuropathy as well. I don’t find the neuropathy particular bothersome in the mix. Its the other , much bigger, muscle stiffness issues that are the glitchers. There is anecdotal evidence that “ adt zombie “ happens in people particularly sensitive to the drugs and that sensitivity accounts for a longer period of time the drugs are effective. In my case that seems to be true so far. Climbing steps ???? Uh … nooooooo yayahahahaya.
💪💪💪😁😁😁
I probably should say that “ all of the above “ I freely welcome …as difficult as it is. my ADT is working so well ( so far ) at keeping me alive …. Having to put up with these issues are well worth it. I’ve gotten used to it over time and I have “ work-a- rounds ‘ that allow me to have a QOL active kinda normal life.
thank you for your reply. A lot of info. I am so sorry that you are having to deal with all that. I hope things get better for you.
Keep going brother, we need you
Hi Kaliber. You wrote "The adt I receive is Lupron Xanax and Zometa." Did you mean Xtandi?
i suggest any type of water activity especially hydro therapy ,you will love it .Best wishes Brian
Move however you can. Any form of exercise, any duration, any intensity is a million times better than nothing. Do not succumb, for if you do you may live much longer than you want to. Onward!
thank you
I am sorry to read of your difficulty walking. I have a similar problem but not identical. My sacral / peroneal nerve was damaged five years ago during a SBRT treatment. However, I didn't find out until three years later that their "highly precise and targeted" treatment was really only so precise and targeted.
I had to have a nerve conductivity test to determine where the electrical signals were and were not going. By the signals, they determined it was nerve damage due to radiation. My left leg and foot are numb and tingle at times. I getting shooting pains in my leg and foot intermittently. My ankle and foot are now paralyzed (also called "foot drop"). I wear a leg/foot brace that fits in my shoe to allow me to walk without falling. It allows me to lift my foot up high enough to walk without catching the toes of my shoe on the floor and tripping.
I think the important thing is to get it diagnosed properly. It may be from chemo or other causes and depending on that, you will be able to settle on a course of action. I also take Lyrica which is for deadening nerve pain. Gabapentin is another similar drug. There are even nerve stimulation implants that can block pain.
I would start by talking to your primary care doctor and oncologist to see what they say about possible and likely causes. Then, I would get a referral to a neurologist for an examination and testing.
Good luck and keep us posted.
Thank you so much. So sorry you are having to deal with what you are. This started for me a few months after radiation on my back (15 rounds) followed by 28 rounds in my prostate area. I mentioned it to the radiation people and they looked at me like I was making things up. But finally said they would refer me to a physical therapist, but been over a month and have not heard from physical therapist (called once asking if they referred me and was told yes). I see my oncologist next month if I do not get a response from radiologist I will talk to oncologist. Good luck on your journey I will be thinking of you.
You may want to also consider getting a referral to a neurologist to assess whether you have any nerve injury or a pinched nerve.
Good luck.
Not sure what you had radiation for, but we just recently went through a cord compression causing my significant other to lose the ability to walk. He declined rather rapidly over a couple of weeks. The tumor growing in his spinal column did not show up in the normal scans. He had to go through an MRI. Then surgery.
Hope your significant other is doing better. I had mets in my back bone. We did 15 rounds of radiation on my lower back then 28 rounds in my prostate area. I was originally diagnosed about 7 years ago at 48 years old with stage 4 Prostate cancer with mets in most all my bones and lymph system. My first PSA was 1,882. I was handling things pretty good till radiation. I had a PSMA scan before radiation and it showed mets in my back so we did radiation. After I assumed they would do another PSMA scan, but insurance denied because my PSA is now pretty much undetectable. So we did a MRI. Mets are still there, but everyone says it is not pushing against nerves. Oh well, I will keep pushing for something or someone to help. Thanks again for the post and good luck.
Thank you for your well wishes. He is doing much better. It started with prostate cancer in his thyroid. Go figure. We are navigating a new normal with wheelchair in tow. But he continues to improve every day and he is currently receiving Pluvicto at Rochester Mayo. I hope you are able to find some sort of resolution soon! Every story can be so different, I think the medical world forgets that sometimes. Especially the insurance, unfortunately.
It seems to be pretty common with the hormone medicine. I'm on Zytiga and Eligard five years while it's keeping me alive the side effects are not pleasant to say the least. But as one of the other brothers mentioned it becomes a way of life after time. Stay active as best you can and stay positive Cancer hates positive. Never give up Never surrender. Leo
thank you for the reply. I will do my best to stay active. Good luck on your journey
My husband's been on Xtandi and has had to deal with multiple side effects, one being "restless leg syndrome." It's listed on the drug's info as one of many. The SEs have bothered him so much that he's now on 1 Xtandi/day and still had an episode of RLS earlier this week. I expect he'll be taken off Xtandi at next appt. in 2 wks. Maybe you can ask your dr. to cut dose to 1/night.
thank you so much for your reply. I hope your husband gets some relief.
Mention this to your MO immediately. It could be tumor pressing on nerves in your low back. I think you need an MRI ASAP. Radiation of the lesion might help.
you too
It maybe time to get another CT scan. Sounds as if the disease has progressed. My stage 4 at the beginning had similar symptoms -inability to walk- stumbling, and numbness. Result was metastasis to the spine and ribs, with a tumour on the spine which was partially removed. Post surgery numbness below the knee remains, but with physio I have been able to walk with the aid of a cane. Very careful as on Xtandi and one of the issues is falls, due to poor balance and muscle weakness. Get this checkedout ASAP
QoL -- Matt's Morning Walk
Pain and blood in urine after long walks
