My profile shows my detailed history. Diagnosed 2/2020 aPCA, mets on pelvis bone and one lymph node, I’ve been on Eligard and Xtandi since then. I developed numbness in toes a month or so after starting my treatment. I had read Xtandi can cause the numbness so wasn’t concerned since it was mild. In the last 3 months the numbness has gotten a lot worse, spread from toes all the way to heel with sharp pain when stretching. Also the heel hurts by end of day. In the last month it has started to spread to hand, mostly my thumbs. I told my Urologist about this on my last Eligard shot in February and he said I have Neuropathy and the Xtandi is causing it and I have to stop taking it. He's had a couple patients that have had this reaction. I was a little concerned because I want to treat my PCA aggressively. He said let’s monitor my PSA with just Eligard for a while and said with the IMRT I had in 4/2020 I may be ok for a while. My PSA has been < 0.1 and Testosterone undetectable. I asked if we might use another med similar to Xtandi and he said we may start Erleada in a couple months but that causes rashes on some people. I’m schedule for 6 week follow-up PSA test in the beginning of April. The neuropathy has not changed in my feet and has gotten a little worse in my hand with sharp stabbing pain running down my hand in a couple spots with certain movements.
What are your thoughts on stopping Xtandi and switching to something similar?
Also your thoughts on the Neuropathy, does it eventually go away if it was caused by Xtandi? Should I go see a neurologist? From what I’ve read about it (I haven’t done a great deal of research) it didn’t sound like there was much to do except treat pain symptoms.
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Atlpapa
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Altpapa, Your Doctor is making sensible suggestion ...to stop Xtandi and just stay on Lupron, Your Gleason Grade is low (3+4=7) so its not too aggressive. Its quite possible that you may be fine with lupron only for some time. If not, you can always add other meds to it.Nalakrats suggestions are also worth looking into. Do Not underestimate healing power of your own body.. neuropathy can get better by itself with time in many people or with use of B Complex Vitamins.
I had read that B vitamins B12 in particular can help so I've started taking B12. My particular PCA even though Geason grade of 3+4=7 is actually on the more aggressive side as it has metastasized to one lymph node and several mets on my pelvis bone. But it being controlled very well so far.
Is the ATL stand for Atlanta by any chance? I'm north of Atlanta in Blairsville and wondering if you are seeing a doc at Emory? I am a Gleason 9 with Met to one side lymph node, on Lupron and getting ready to start Xtandi. In proxcess of getting 2nd opinion at Emory
Wow, that's a lot of stuff thanks for sharing. Did your oncologist / urologist prescribe the ones needing a prescription or did you see a specialist? I need to do something because it's preventing me from sleeping through the night. When i get up for my 3 am pee I can't go back to sleep
Stop the Xanti and don’t go back to it. There will be better choices for the future. Good to see how your cancer behaves on basic ADT. You should have a medical oncologist on your care team and not just a urologist. Though the advice of yours seems sound. Gabapentin (neurontin) is a good first choice for treating the neuropathy symptoms until they )hopefully resolve. 300 mg at night will help with sleep. But that dose I’m the morning likely will make you sleepy. I would try a half dose for daytime to see if it is sufficient. (100-150 mg).
In the “advanced androgen receptor” category there is abiraterone plus prednisone which is very effective (for whatever time) but I’m not sure how much it is being used in the hormone sensitive. Then beyond and better than Xanti are apalutamide and darolutamide, if you can get them approved. Here is an articlepubmed.ncbi.nlm.nih.gov/315...
My neuropathy pain is sever.. Gabapentin helps a lot... I had to keep raising my dosage to get rid of flaming fingertips and feet 3000 mg spread over to day relieved pain everywhere except my 2 center fingers on each hand. 3600 mg finally got them too. 1200 mg in morning, 600 at noon and 5 pm , Then 1200 at bed time. To each his own, but this is what works for me...Xtandi complete killed nerves to back of my hands. Full dosage made me a complete invalid, Cut to 1/2 dose and was on it for 4 years..Has recently quit working for me.
my natural doc put me on 20 mg melatonin and 4.5 naltrexone prior, to bed .. I’m still up 7 times per night myself . But I fall back to sleep easily . Six years of the same .
You can try heat, cold, or alternating heat and cold for the neuropathic pain. If you don't overdo it (no scalding hot water!) it should be safe and easy to try. Whether it works or not will depend on what damage has occurred. If it's stiff, swollen, and damaged joints, alternating heat and cold might loosen everything up and relieve the pain. You can sit on the side of a bathtub and run warm water over your feet for a minute or two, then switch to cold for another minute or two. If it's working, try another cycle and see if it gets still better.
Stretching and exercise might also loosen things up and keep the joints from locking and cramping. Sometimes frequent movement of the joints can help.
With either treatment (heat/cold or exercise) keep it reasonable.
As for getting off Xtandi, it sounds to me like your oncologist is right. Stop the Xtandi. Wait to see what happens. Will the pain reduce? Will the PSA stay low? Is it confirmed that the Xtandi was the problem? With your PSA in good control now the Eligard alone is probably working well and it shouldn't be very risky to rely on it alone until the neuropathy is reduced and controlled.
thanks for the reply. I've tried soaking in hot water, maybe I'll try alternating with hot followed by cold. I just recently started weight resistance (with those rubber band things) because I have osteoporosis but was wondering if the stress on the hands will make it worse.
Hey ATL , I too am in osteopenia, the prolia seems to be helping . Infared sauna feels real good or hot springs are best . I never felt better then after dipping from the cold river into the hot springs at Pagosa . I have neuropathy and little hand strength now . My thumbs are still locked and screaming from shoveling snow a few months ago .. Good luck . 😎
I have foot neuropathy. I blamed chemo, even though it appeared just after chemo. I started Xtandi as soon as I finished chemo. Dr. did not mention Xtandi as possible cause, but others here have associated neuropathy with Xtandi. It seems to be slightly better than it was 3 years ago. It is very aggravating, as you know. I do take Gabapentin.
Xtandi has given me plenty of neuropathy. 160 mg and I couldn't wiggle or feel toes. Hands numb. Face and butt numb. etc,etc. Cut to 80 mg and have survived with lasting neuropathy in feet, and hands.. but I can walk again and lead semi normal live.... But I feel like I am an old man... 71 next month and have a hard time pretending I am a kid... Back on my bike, but wife says no to the motorcycle in my garage...
I’m on Lupron Xtandi for two years and I have foot neuropathy . It feels like I’m wearing big thick padded loafers or something. I thought I had the bottom dregs of Lupron Xtandi side effects , but your spreading neuropathy even beats me. Dunno if you have access, ... but a medical grade jacuzzi, like any of the j-300 series , have numerous foot jets and other reclining jets that address your feet. I find massaging my feet for 15-30 minutes ,with different assortments of jets , is very beneficial. For me , norco ( Vicodin ) nails the discomforts - pain completely and is long lasting. Heavy dose edible cannabis products like cookies is very effective for that as well, if you don’t mind being that stoned.
Lupron Xtandi is quite literally keeping me out of hospice and prolonging my life. I’d be very resistant to changing those meds considering ...
i can definitely relate to your experience of '.. feels like I’m wearing big thick padded loafers or something..', for me it feels like my socks are all waded up under my toes. I can't spring for a jacuzzi but messaging makes them feel better.
That’s exactly what mine feels like too. Exactly. You might access a jacuzzi at a local fitness club or I’d bet you can use one of those power jet tubs that your medical center rehab department has. They’d probably be happy to let you or just get a recommendation from one of your docs there. There are those little home foot bath massage units you can buy but they don’t look like they have much power ...never tried one tho ... might work great.
I’m not bothered much by that foot neuropathy thing tho ..... on a scale of one to ten , it’s a two ...maybe a three ...and I’ve got a shipping container load of twelves from my adt. I’m invalid partial wheelchair disabled by it .... and that’s not the worse thing yayahahahaya yayahahahaya. I’m good with it all ....keeps me mentally sharp figuring out “ workarounds “ ....the fight keeps you busy and sharp. Making the most of your QOL while you still can.
Sorry for your neuropathy problems, Atlpapa. A friend who has non-chemo, non-diabetes, non-medication-related neuropathy got relief some years via the Weill-Cornel Neuropathy Center at Columbia University. neuropathy.weillcornell.org
My husband may be checking it out, too. None of his precautions during chemo worked well enough to keep neuropathy from developing, and he's tried all kinds of other things post chemo to no avail. My friend, BTW, who had a recent flareup, is getting prescribed
Neurontin (gabapentin) and Pamelor (nortriptylene), which cleared up her neuropathy before. Good luck!
Thanks for the info. Gabapentin seems to be the common drug in the replies I've received so I'll ask about that for sure. Then research the other suggestions. Good luck to you, your husband and friend on their journey.
Yes, you should establish continuity of care c a neurologist but also c internist (who can advise you whether you need to see an endocrinologist if you are pre-diabetic or diabetic). I know that sounds like overkill, but neuropathy is very complex & not all docs know beyond neuropathy 101. Multidisciplinary workups may/may not be ultimately beneficial, but, if not, you can always drop a doc after you suck out all helpfulness.
Note well: Neuropathy can “kill” Mr. Happy - even beyond reach of Viagra, Cialis, Levitra, injections, yes, into base of penis - in case you need motivation.
My further rec is to manage your neuropathy immediately — e.g., low sugar/carb/quantity diabetic diet if DM II = issue, and I found good nutritionists very helpful. I’ve had diabetic neuropathy for 20+ years. It causes irreversible nerve damage. I put off getting my mind right about diabetic diet for several years which unnecessarily accelerated my neuropathy. Even though I’ve controlled my diet & diabetes for 10 years, I slowed progression of neuropathy - depends on individual like everything else - but neuropathy generally never stops progressing once started.
Re gabapentin/neurontin, there’s a reason to be under neurologist as titration is v important, b/c effectiveness can turn to toxicity c poor management. Happened to me despite best intent. Very unpleasant. My Rx thankfully stopped severe lower extremity itching/stinging w/in 24-48 hrs, but numbness never stopped & has only increased to this day, so I’m now on a cane c difficulty walking. Just sayin’.
p.s. I saw my new podiatrist yesterday - if you’re a diabetic, you need one of those, too, especially to help keep toes, feet. He told me he’s seen many patients over years with neuropathy caused solely by apalutamide/Erleada. No one else warned me re this, including my med onc. M.deities. With your comment, I wonder if 2nd generation -lutamides aren’t all guilty.
My pain center (more docs) just Rx’d diclofenac sodium 1% topical gel for foot/hand pain. They described it as kind of like a topical NSAID for those who can’t tolerate NSAIDS. It is helping me.
I have some neuropathy caused by levaquin. Gabapentin can have serious side effects. Other options are benfothiamine and a waffle tote vibration plate machine that vibrates on your lower legs abs helps stimulate the nerves. Since chiropractors have a new device for neuropathy so you can check with your local chiropractor.
First. See a good oncologist, I’ve been on Xtandi now for about 4 1/2 years I had a rough start with neuropathy, it turned out to be a interaction with a opiods that I was taking for pain, switched to Morphine and the pain went away. Xtandi has a full time pharmacy on staff to answer your questions call them to discuss the issue. Keep up the fight warrior 🙏🙏🙏🙏
larry - thank you for this. my (new) pain center talked just today about switching me from opioids for pain to low dose morphine. scares me for all the obvious reasons. can you address your personal pros & cons? best, mike
Pete, I had no problem getting rid of the pain, couldn’t sleep or get comfortable at all. As soon as I changed to the morphine the pain went away. I’ve been on the morphine now over 4 years and no down side for me. I take a pill morning and night with a dilaudid mid day. I’m very mobile and only problem is I sometimes overdo what I’m supposed to do. Mets in spine and ribs plus others .the doctors need to know that opiods cause the neuropathy when taking Xtandi
larry - does the v low dose morphine have any cognitive or psychological downside for you? I understand that all of this differs by individual. thanks!
oh...larry, i also meant to ask, have you tried medical marijuana for pain? if so, pros and cons relative to the morphine? (besides “gummies” being disgusting, i mean.)
I’ve tried a couple of the canibus meds but did nothing for me. I don’t smoke so limited on my experience. That said ,my doctor said early on that there was no need for me to be in pain during this fight, I believe in it as well. Am I hooked maybe, I can sure tell when I don’t take or miss a pill but it’s the pain in my Mets that tell me.
I'm just starting Xtandi and having trouble swallowing those horse pills. (4 40 mg per day) After the first one I start to gag and have to relax a bit then take the next. I do that at breakfast. How do you manage them?
1200 mg at breakfast, 600 at noon, 600 in afternoon, and 1200 at 10 pm... gets me though and I can now touch my keyboard without pain.. Just slight discomfort.
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thanks for sharing. Did your oncologist / urologist prescribe the ones needing a prescription or did you see a specialist? I need to do something because it's preventing me from sleeping through the night. When i get up for my 3 am pee I can't go back to sleep 
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