Has anyone experienced 4 extremity peripheral neuropathy in the form of numbness and tingling while on the combination of Lupron ( 6 1/2 years and 16 months added of bicalutimide . Gleason 9 , Stage IV multiple bony metastasis- PSA undetectable. Spinal MRI unremarkable , B-12 and folate levels WNL’s . Pending electrodiagnostic testing at MSK 8/20 . Any insights or experiences appreciated ??
Edward
I have not heard of this.
Given that you've had this treatment for years without these symptoms, it would seem surprising for them to cause the symptoms now. You can check the FDA drug labels (search google for "FDA drug label lupron", and "FDA drug label bicalutamide" no quotes), then scan the resulting documents for "neuropathy" and for "adverse effects".
It's possible that what you're experiencing is normally called by some name other than "neurpathy", so also look for "numbness" and "tingling".
I'm sure there's some kind of medical specialist that would be knowledgeable about this sort of thing, but I'm not sure what kind. Perhaps a neurologist would be able to diagnose the problem.
Best of luck.
Alan
Thank you for your response . I have done that and have seen responses to bicalutamide . My MO did recommend after the results of the electrodiagnostic testing to go off the bicalutamide but they haven’t seen that before in combination with Lupron . My PSA was rising on Lupron alone and two 1/2 years on the bicalutamide I am undetectable so you can understand my reticence to go off it . Yes , will seek multiple neurological opinions in NYC
I do have neuropathy .. I blame the combo of overuse of antibiotics for uti’s for a year and a half also adt and 8 weeks RT .
Sooty to hear of your experience with neuropathy
One of the pleasures amplified by treatments ..Good luck to you .
I found bicalutamide made the problem much worse - in fact I lost my lower legs and feet altogether and had to stop the bicalutamide before I fell over. Back to normal after about 2 weeks. In any case, it had stopped working for me and my PSA sailed past 7. On the face of it, you could stop the bicalutamide as your PSA is nice and low. You can always go back onto it after a break, as the negative effects are time accumulative.
Thank you - I think it could be the bicalutamide! That is certainly an option to explore - just hope my PSA doesn’t rise without it .
Not sure if it’s from Lupron, more likely from chemo but it s something I have in m feet and finger tips. Dr. Myers had me start taking Alpha Lipoic Sustain, it’s a supplement available through Amazon seems to help, I’ve been using for about 3 years now. I use the Jarrow brand.
Ed
Thanks for the suggestion- I am familiar with the supplement . BTW Never had chemo
I would suggest you see your cardiologist. Remote possibility that numbness and tingling is related to cardiac disease or peripheral vascular disease process. Full disclosure: I worked for a medical triage company for more than a decade. We supplied hospitals and clinics with triage guidelines including guidelines for cardiology.
Thank you for the insight and recommendation . Will certainly consider after electrodiagnostic testing .
Again.... My Meds for peripheral neuropathy:
1 Neurontin/Gabapentin 600mg in the AM and 1 in the PM. (Been on it for years and it helps)
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 08/08/2019 6:38 PM DST
Thank you . Still awaiting further bloodwork . Just found out homocysteine levels are elevated to moderate levels . Awaiting further bloodwork .
Neuropathy of feet after chemo was done. Just increased Gabapentin to 1 600 mg am, 1 600 mg late afternoon, 1 600 mg before bedtime. MO will try Cymbalta if this doesn't work. Too early to tell. Fatigue and sleep inducer. Definitely reduced back issues. Bending is far easier now. Alpha Lipoic Acid doesn't seem to do anything. Who knows? Down the rabbit hole again.
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