anything new on Nueropathy??

RozHopkins said:

If I remember correctly I had

If I remember correctly I had this too and eventually it just went away.  Ask your Oncol though the next time you see him and ask whether a common side effect.

i was put on a med.
After a month, there was no difference. When I told him, he said yeah , he hasnt had a lot of success with it, but a few people said there was a difference. I have been off chemo for 110 monthsd still cant tell the dicference. My new onco suggested the same med. He said time sometimes helps. But some people will have some residual effects.
I found that accupuncture helped the most!
Yes quality of life is my goal, yet some of these meds have an agenda of their own.

Hope it gets beter for you.
Carol

I found help with meds

It was my Radiation Oncologist that heard me when I commented on the foot pain, tingling that I was experiencing and it was getting worse.  My feet really got worse during chemo.

The med I am on is Neurontin/taking generic Gabapentin 400mg 2 times a day and 800mg at bedtime.  This has been the wonder drug in my life.

Long History of Pain & Neuropathy Treatments

·         I was put on a new medicine regimen that I am still on today back in the summer of 2011:

1.       Upped my Gabapentin to 2100 mg /day (3.5 pills per day). They wanted me to take 2400 mg, but I couldn’t take that much, I felt sick to my stomach and hung over, hence the ½ pill.

2.       Amitriptyline-25 mg at bedtime. It’s an anti-depressant know to have some success in pain reduction in SOME people. It also helps me sleep through the night.

3.       I have been on Metaxalone 400 mg at bedtime (occasionally I take one more a day, but not often). This is a muscle relaxer. I don’t know how to explain how it works, but I could sure tell the difference when I weaned myself off of it. UPDATE: In 2014 Medicare stopped paying for Metaxalone, so I am taking Cyclobenzaprine HCL 10 mg Tablet at bedtime. (lupdate 4/26/14- I have stopped taking the Cyclobenzaprine becuase after coming off high dose prednisone since 12/2014, something was making me sick, like hung over feeling so I stopped that and it seems to be helping).

4.       Tramadol- I take as needed for pain. I was told that Tramadol was invented as a non-addicting replacement for Vicodin. I can’t take it every day or it builds up in my system and I feel sick.

5.       Vicodin w/ Tylenol 5-325- sometimes Tramadol doesn’t cut it so I take a Vicodin.

 

Lidocaine Patches and Creams

1. I am not able to use Lidocaine creams because I have to large of an area to cover.

2. 2014- New pain doctor asked if I wanted to try a cream made of hot peppers (I am thinking jabaneros?). He said it hurts like the dickens going on, but a lot of people get reliefe from it. Since my damaged nerves are already hypersensitive and interpret non painful sensations as pain, I passed.

3. In 2011 I tried Lidocaine patches. What a disaster. Because of my damaged nerves interpreting everything as pain and magnifying it, taking off the Lidocaine patches was EXTREMELY PAINFUL. It caused more pain than before applying them. I even tried those pads for removing tape, etc. that they use at the hospitals and no luck.

Stellate Ganglion Nerve Block Shots to the Neck and Lidocaine Treatments

1.       They tried stellate ganglion blocks in the neck first. They gave me painful shots in the neck with a huge needle. Also dangerous because they can’t hit an artery with the Lidocaine cuz then it would go straight to the brain. I only had about two weeks’ worth of some relief and they could only do one side at a time. The pain and danger was not worth the little bit of relief I got.

 

2.       During this time period, I was given a referral to a pain psychology specialist. He is/was the best counselor I have ever seen. He taught me a few very important things (I stopped going when I got all I thought I needed to know for me.)

·         I learned that people with chronic pain cycle. When I felt good, I would overdo it. Then I would do very little the next day(s) because the pain was worse. Then I would repeat this over and over.

·         I learned that I can only do so much in a day, what activities/housework aggravated me the most, and that I have to stagger activities/housework so I don’t do it all in one day, do too much that aggravates me the most in one day, and to take breaks to rest my arms in between activities/housework.

·         I learned that my pain is the result of nerve damage and LE. Since the damaged nerves are sending the wrong signals to the brain, everything is pain; I needed to use my mind to combat this. I just tell myself that there really is no reason for the pain, that it is just the nerves sending wrong signals and that there isn’t an injury causing the pain.

·         I learned that LE can cause pain and that perhaps my LE pain is worse in the areas that I have nerve damage because the nerves are already interpreting everything as pain, so the LE pain might be worse than it would have been without the nerve damage.

 

Lidocaine Infusions

3.    Next they started Lidocaine IV infusions. The hooked me up to an IV, and put a bag of Lidocaine in my vein. I have been on this since summer 2011. In 2011 I got them about every 6 weeks, and then gradually moved out to every 8-10 weeks, now I can go about 10-12 weeks. It used to take me about 3 days to come out of the fog from Lidocaine, and I slept the first two days mostly. Now, I don’t sleep at all during the day from it. I still feel out of it for about 3 days, but not nearly as bad as in 2011 and 2012. They are finally starting to lose their effectiveness. My new pain dr. warned me eventually this would happen.

-2014 Update: I switched pain doctors and the new one handles Lidocaine infusions a bit differently….

-He only uses the bad of lidocaine. He doesn’t use a saline solution along with the Lidocaine bag. He doesn’t want to dilute the Lidocaine in the system so the patient gets the full strength Lidocaine. He also gives it over a 30 minute period.

-For me, I get better results when Lidocaine is given over 30 minutes rather than 45 minutes.

-My last pain doctor would sometimes give it over 30 minutes and sometimes over 45 minutes.

-2013 My long term, high dose Prednisone has given me Diabetes and I notice that my diabetic neuropathy impro ves with the Lidocaine infusions (Diabetic neuropathy is extremely similar, if not the same as Chemo Neuropathy.

 

Neurostimulation Therapy

4.      2013- I am currently awaiting insurance approval for a three day trial for Neurostimulation Therapy for Chronic Pain made by Medtronic. Basically, it is two leads (wire like things) that are inserted into the spine. I have a remote that turns on little mechanism that is attached to the leads that sends out tingling sensations. I can turn it on and off, and set the degree/strength of the tingles. The object is to head off the damaged nerve pain signals before it gets to the spinal cord and to the brain. The brain then feels tingles instead of pain information. The three day trial only involves the leads and the little mechanism is taped to the outside of the body. I have to limit certain movements, so the leads don’t move around (in the permanent implant, scar tissue made by the body around the leads holds them in place and the mechanism attached to the leads is surgically placed under the skin. My remote is placed on the skin to charge it under my skin).

-UPDATE: I had the Neurostimulation trial in June of 2013. It failed. It caused me more pain. It was just awful. Please note that it is impossible to tell if it will work on you based on another’s results. The pain doctor who performed the trial said he had many breast cancer patients that it worked for.

 

5.       There is no guarantee it will work. Like everything else, the dr. can’t predict who it will work for and who it won’t.

 

6.       The Pain Dr. told me that some women have found less swelling from LE with this thing. But that is just the patients and the pain dr. I don’t know if there is data out there on it or not.

This is my pain journey in a nutshell. It started out with a lot of fumbling around to get to the Pain Clinic. My first pain doctor told me that treating pain is never a sure thing. We can try X, and it may or may not work, so then we try Y. It is a matter of figuring out what works and what doesn’t.

I highly suggest that if you are having long term pain and neuropathy issues to see a pain doctor as well and make sure that your cancer treatment team and pain doctor know what the other(s) is/are doing.