Dead nerves and deteriorating bones

[Shooter1]

Scans last year showed bones in hands and wrists deteriorating, This years scan shows bones in feet deteriorating. Is this related to Chemo residual effect or Xtandi?? or just bad luck with life?. Nerve study showed motor nerve reactions slow and many sensory nerves in upper extremities slow or dead. Must wear gauntlet gloves to put wood in stove otherwise I burn the back of my hands without any feeling, just get blisters. Any Ideas?? Sometimes new normal kind of sucks.

[Tall_Allen]

Neuropathy is a side effect of chemo, but "bone deterioration" isn't. If you mean by that loss of bone mineral density, that is a side effect of long-term ADT. Zometa or Xgeva should reverse that.

[Hidden]

You should gave been getting (via IV), Zoledronic Acid (Zometa) every 6 - 8 weeks or so to counter one of the effects of low testosterone - bone density. Sounds like you need drastic measures to get that right. Most of the Chemos and Xtandi will destroy nerves so we live with tingling fingers and toes that went AWOL, and perhaps failing eyes as well. There is some regeneration after months (of lower doses), but holding off the treatments can have an even worse side effect. I hope you can get some reversal going and can move to a warmer climate as cold increases the problems.

[larry_dammit]

Been on Xtandi now for 30 months. Starting to have problems with my hands as well. Have had the finger lockup for a long time but now thumb is giving me trouble. Good luck with the monster 🙏🙏🙏

[JuanVV in reply to larry_dammit]

Did it take long for your Psa to lower with Xtandi? Do you have any other side effects? Thanks

[larry_dammit in reply to JuanVV]

My PSA was going down when I did the chemo, I can’t remember for sure but wife thinks it was 3 months or so. Let’s see. Side effects are dry tendons, finger lockup, runny nose, hair loss, have to be careful with drug interactions, be very careful with dental problems. Actually read the brochure, most of the annoying stuff. Not much of the really bad stuff. Sorry to be vague but the chemo brain has stayed with me, not as bad as it was but still here. Good luck 🙏🙏🙏🙏

[JuanVV in reply to larry_dammit]

Thanks so much!

[EdBar]

I too suffer from neuropathy from chemo. Numbness in fingers, and I would get a tingling pins and needles feeling in my feet when walking. I’ve been using a supplement called Alpha Lipoic Sustain under the Jarrow brand name available on Amazon. It was recommended by Dr. Myers a few years ago seems to help especially with the feeling I would get in my feet when walking. I tried discontinuing once and neuropathy got worse so I continue to take it. As always check with your doctor before taking any supplements. My current docs have no problem with it.

Ed

[Tua32427]

My father had similar issues from having RA as well as many bone mets. They gave him zometa. It seemed to help.

[monte1111]

Just started Alpha Lipoic Acid a couple of weeks ago. Don't know if it does any good unless it is injected. We shall see. Also taking Gabapentin for foot neuropathy but doesn't seem to help. Keeps it from getting worse? Does not appear to be a lot out there that is helpful. I see that you have been on quite a journey. Sorry about the brace. That just cannot be comfortable. Good luck going forward.

[Kevinski65]

I've been on Xtandi and Lupron for 4.5 years, before that it was 2.5 years of Lupron alone. I have numbness and tingling in my feet. I've been taking the full Monty of Xtandi pills. I've been getting a yearly dose of zometa, I wonder if that is ok.

[Shooter1]

Now 70. Taking gabapentin at 3600 mg dose which gets rid of burning pains and alpha lipoic acid to supplement treatment.. Stopped for 2 days before surgical procedure and flaming pain in feet was so bad I couldn't sleep the night before.

[Shooter1]

Surgical repair on left little finger on 8 yr plan--great success. Over a year of unhealed and painful crease after burn. Now free of pain and healed with minor scarring Left wrist x-rayed and mid metacarpal bones bone to bone, no arthritis as suspected. Surgery possible but complicated by earlier thumb repair which removed one of my metacarpal bones and built joint with ligament from for arm. Injections under traction seem to give great relief for now, no pain moving wrist and will continue them as long as they are effective. Seems my body keeps telling me I am 70 and have lived hard. P.S. Eight year plan. Had thumb rebuilt on 10 yr plan two years ago. Drs said I would be gone in 12 mo 3 1/2 yrs ago and after chemo and orchiectomy, I told them I had 10 yrs and would live my life accordingly. Still counting down.