Post-RPLND Nerve pain

[TC Mom]

Zach is 75 days post-RPLND and still experiencing significant nerve pain in his left leg. His pediatric oncologist tries to pass the buck, so-to-speak, with this "we didn't do the surgery" nonsense and will only give him Gabapentin to take along with Ibuprofren. They started him at 300mg, 3x/day, then upped it to 600, then 900 with plans to up it to 1200. I let him try the 900 for two weeks, but have him back down at 600 for now. He is so out of it at times on this med... he fell asleep on the couch this week and was only out a few minutes when I woke him. He knew his name, but not what year it is or who the president is. He gets to where he can barely function. He is really not getting much relief either, his leg is hurting more than it is not.

Dr. Cary said he's never had anyone's nerve pain persist this long and suggested Norco to use ONCE daily, when the pain is the worst, but his doctor here will not give it to him. Some of the oncologists I work with have suggested Lyrica, but Zach's team refuses to entertain that either. He is back at school and has to walk back and forth across campus all day and some days the pain is unbearable.

Does anyone have any suggestions that worked for them? We are headed back to see his ped oncologist in the morning but do not expect much from the visit.

[Mike]

Well, it sounds like to me that the gabapentin's side effects are outweighing any benefit and the doctors are reluctant to use Lyrica or the narcotic Norco. You may want to ask the doctors if trying duloxetine is a reasonable approach. Unfortunately, there aren't many options when it comes to nerve pain.

Mike

[Trekga]

So sorry for Zach and you! I hope ya'll find something to help with the nerve pain. Does the local hospital not have a pain/palliative care unit? The hospital were Grant had his chemo has a unit and they weer at his 6 month survivorship appointment earlier this month. They offer many alternative treatments besides prescription narcotics for kids/teen with pain from treatment.

[sanis]

Are you sure this has been caused by the surgery and not by the chemo? In theory it could be cisplatin induced neuropathy too - even if it is the left leg only. And if this is the cause then - again in theory- b6 and magnesium (maybe even NAC?) could help.

[TC Mom]

QUOTE=Mike;n306233]Well, it sounds like to me that the gabapentin's side effects are outweighing any benefit and the doctors are reluctant to use Lyrica or the narcotic Norco. You may want to ask the doctors if trying duloxetine is a reasonable approach. Unfortunately, there aren't many options when it comes to nerve pain.

Mike[/QUOTE]


I've been asking about Lyrica for weeks now and they kept ignoring me, but today they decided to give Lyrica a try and also a pain patch (Lidodrem) so we will see.

She asked me what the surgeon suggested because "we didn't cause this". Over and over again, his local oncologist and urologist have told me that they didn't do the surgery so they don't know, etc... nerve pain is not totally unheard of with chemo patients. It's so frustrating!!

Trekga.... that's a good idea and we will ask about that in Jan if these new meds don't do the trick. I just feel so bad for him.

Sanis.... his surgeon said that nerve pain in his left thigh was to be expected after surgery, but that it generally only lasts about a month. We can toss in some B6 and magnesium I suppose - couldn't hurt. Thanks for the idea.

[biwi]

I had mild left leg nerve sensation and pain after my RPLND. It definitely feels different than neuropathy. You could feel it was from an irritated/rubbed nerve that was near the lymph nodes removed. Thankfully for me it gradually went away over the course of 2-3 months and is completely gone now.

[sanis]

OK - I never had this type of feeling / pain after my surgery

[Tyler94]

I also experienced some slight nerve pain/leg pain in general in my left leg, specifically my hamstring. I am about 3 months post RPLND now and the nerve pain and pain in general in my leg has gone away completely. I found that once I got back into the gym and was active it helped me out a lot.

[S P]

Sorry to hear about the nerve pain, although it's far more likely to be from after effects of the chemotherapy and not the RPLND, but besides the point.

I can relate to all of this. My nerve pain was absolutely terrible -for a year- after chemotherapy. It started a month or two after treatments ended, and I'd have terrible shooting nerve pain and spasms, especially if I was at rest. I also tried Lyrica, but hated it. Sure, it helped with the nerve pain, but it also made me feel like I got hit by a bus constantly. Between periodic nerve pain that felt like someone was driving a huge stake through my feet that came and went quickly, and feeling like I'd been hit by a bus constantly on the Lyrica, I dropped that stuff and just dealt with the pain.

By pure accident, I discovered that my nerve pain went away if I did some vigorous exercise, like running. It was something about the running giving the nervous system a workout that just calmed it down, and I hardly had any nerve pain anymore. It was an amazing night and day difference. I know some other TC survivors who swear by acupuncture for dealing with this, too. I've never tried it myself, but it's multiple TC survivors that I know who've tried this successfully for dealing with nerve pain, so consider that also. Lastly, have him drop all of the caffeine and sugar out of his diet, too. That definitely makes it worse.

This reminds me, I never did write a blog specifically about neuropathy and all of the crazy effects. I should do that. Hope some of this helps.

[Sk8rMom]

Hi TC Mom. I found your post in a search and can relate! How is Zach feeling nowadays? I know this is an older post so I hope he is doing better!