Need some help with Neuropathy

Lyrica has been working well for my husband. He initially developed neuropathy after only 3 rounds of Gem/Cis, so they stopped the Cisplatin. The neuropathy did eventually get better but did not disappear. The Gemzar was discontinued later on for other reasons. A few months later, his onc decided to start up the Gemzar again and after 1 round the neuropathy returned with a vengeance, plus he developed pneumonitis, both of which were attributed to the Gemzar. Until he tried Lyrica, he was taking 10 mg of oxycodone every 4 hours, which only helped slightly. I strongly recommend trying Lyrica.

Dan…I was just in the process of finding Matt’s postings, but fortunately he was quick to respond. Thanks Matt.
Hugs,
Marion

Dan,
My wife Lisa continues to deal with significant neuropathy as a result of several rounds of chemotherapy last year. She has tried pretty much every treatment available and has been able to mitigate the symptoms somewhat through a combination of medications, physical therapy, and naturopathic remedies. While her symptoms do not appear to be as severe as those experienced by your wife, Lisa continues to have significant numbness and lack of feeling in her feet. This constant numbness definitely impacts her gait and balance, and she is still not able to drive a car or walk for long periods of time without frequent rest breaks.

The only drug that has worked for my wife is Lyrica. She tried gabapentin and cymbalta to no avail. The Lyrica does not cure the neuropathy by any means, but the symptoms seem to be much more manageable when she takes the maximum dose of 600 mg every day. She was also prescribed a drug called Metanex, which is also taken daily. We are not sure what impact, if any, the Metanex has on her neuropathy, but there are a number of anecdotal reports of patient improvements with this drug.

In addition to the Lyrica, Lisa has weekly physical therapy appointments with a physical therapist who specializes in chemotherapy induced peripheral neuropathy (CIPN). She performs daily exercises recommended by the PT and has learned a number of coping strategies that have helped her quite a bit. Lisa’s physical therapist also recommended electro stimulation therapy (TENS device) which she uses every day in an attempt to help the nerves regenerate more quickly. Again, we are not sure if this treatment is effective since there is little empirical data to support its efficacy, but Lisa is incredibly motivated and is willing to try anything to beat this neuropahty so she can get back to her normal life.

Lastly, Lisa has weekly accupuncture and massage treatments specifically focused on her feet and hands. These treatments seem to help, but quite frankly, she is doing so many things to treat the neuropathy, we are not sure what is working and what is not working. But at least we know that she is doing everything possible to manage her symptoms.

The oncologist and surgeon have told us many times that none of the above treatments will cure the neuropathy. The nerve endings take time to regenerate and apparently nothing can speed up that process. Our goal is to manage the symptoms until her body can heal itself.

Please feel free reach out to me privately if you would like to talk or if we can provide additional information. I can definitely relate to the pain and frustrations caused by severe neuropathy and hope that your wife finds relief very soon.

-Matt