Neuropathy for $100, Alex!

[gleason9guy]

I developed neuropathy in my legs during my Taxotere treatments for PC. It hasn't gone away and I remain on Gabapentin for relief. It certainly helps but I'm always reminded it is there. While my urologist readily admits the reality of the situation, I'm ready to strangle my oncologist as he can't seem to even acknowledge this as a possibility. What's with the tone-deaf attitude of these doctors in regard to side effects of their treatments? And would it help to take a ball peen hammer to the bottom of THEIR feet to demonstrate the uncomfortable nature of my existence?

[GeorgeGlass]

I wish you the best and I empathize with you on the tone deafness of side effects. That should be the first class in medical school -empathy and believing patients.

Has the gabapentin cause any type of hallucinations, mood changes or dizziness, which are listed as possible side effects? My mom was going to take it until she read the possible side effects, which are pretty scary.

[gleason9guy in reply to GeorgeGlass]

No, no problems on the gabapentin.

[Tall_Allen]

What could your oncologist do anyway? Have you talked to a neurologist?

[gleason9guy in reply to Tall_Allen]

That's a very good point, Allen. No one has suggested talking to a neurologist at all. So you believe that's the next step, eh?

[Hidden]

I have a friend who has neuropathy and uses Cannabis at a 1:1 ratio of THC to CBD. He says he's experimented and that works better than anything else he's used. Don't know if that's an option for you, just though I pass that on.

As far as Oncologists not telling you everything etc, I think we should try to get the best Medical Oncologist we can, but we also have to educate ourselves. Before I started chemotherapy I studied and learned as much as I could. I calculated what my dose should be and verified it on the bag before infusion, I checked the blood numbers myself and learned what the limits are. This forum has a wealth of knowledge, plus there so much available online.

I have learned that Cabazitaxel (Jevtana) has a better side effect profile when it comes to neuropathy so I plan on asking for that if neuropathy gets to be problem. No guarantees it will completely solve the problem but we just have to do the best we can.

[BerkshireBear]

My story is a bit different. My neuropathy diagnosis is about 20 years old, and the result of a bone marrow disorder.

When I had chemo for Lymphoma my oncologist removed one drug from the cocktail stating that it was notorious for causing and exacerbating neuropathy. It worked, the rest of the cocktail did its job, I'm in remission for almost 3 years now.

Later had a "cryptogenic pneumonia" which had baffled doctors for about 8 months. Infectious disease specialist kept trying different antibiotics and had basically run out of drugs to try. He had one more, told me it is notorious for exacerbating neuropathy but his final hope. Asked if I would take a short dose. I agreed (8 months of pneumonia hadn't been exactly fun). Neuropathy kicked up to an aggressive mode in a couple of days and stopping the drug didn't make it retreat. Two years later the neuropathy continues chomping away at my nerve endings. And gabapentin no longer was much help, and the doc and I feared the side effects of adding more. He suggested I try alpha-Lipoic acid. I've been on it nearly a year, while it doesn't treat neuropathy, it seems to minimize the randomness of symptoms that I felt, thus making it more tolerable.

So there are two examples of doctors who really listened and cared.

The problem with neuropathy is that once the nerve endings are gone, they don't grow back. (Spontaneous and juvenile exceptions noted.) Research in that direction doesn't seem productive. My experience with neurologists is that they perform a bunch of uncomfortable tests, confirm you have a problem, and say there is no cure == so, how about some gabapentin.?

[Magnus1964]

Here is my prescription for neuropathy:

1. Mirapex 1 tablet 0.25mg - prescription

2. Gabapentin 2 capsules (300mg) - prescription

3. Acetyl L-Carnitine 1 capsule 500mg - over the counter

4. Leg Cramps (by Hylands) 2 tablets over the counter

5. Aleve PM 2 220mg - over the counter. Because Aleve can cause liver damage with long term use I have substituted Zyflamend 1 capsule.

6. CBD oil 2 drops.

I take each of these drugs at least 20 minutes apart in the early evening. This helps me get a good nights sleep. The effects last all day long.

[lardoz]

My oncologist told me it was a side-effect before I started taxotere. After six treatments with taxotere cancer is back and on am on jevtana. While on taxotere I went to local physical therapy and tried infrared light treatments which think prevented neuropathy from getting worse. Also, I heard that the tens device called rebuilder can help which is FDA approved. However, I can't use my tens device because of dvt on one of my legs. Best...

[EdBar]

I had Taxotere chemo back in 2015 and still experience neuropathy to my feet and fingers. Snuffy Myers had me start taking Alpha Lipoic Sustain produced by Jarrow and available on Amazon. It seems to help but it hasn’t gone away completely, it will likely never go away completely. You may want to give it a try. I still take it twice daily.

Ed

[Rexwaterbury]

Easier to try to prevent neuropathy then to treat neuropathy. I have my hands and feet surrounded in ice for three hours beginning one hour before chemo and continuing for one hour after chemo. I also take alpha lipoic acid for prevention. So far so good after five rounds of chemo. Only a slight amount of numbness on the balls of my feet. I was well aware that neuropathy would completely ruin my quality-of-life, so I am taking every precaution.

[Hidden]

Have been on Gab for maybe 10 years, 500mg tid, offlabel use for leg pain... Seems to be working, so I keep taking. No obvious side effects.

[herb1]

Gleason9guy: I don't know if it matters but I have neuropathy and have not had chemo, except for Lupron/casodex/avodart. I suspect the Lupron. After bugging my GP, he finally mumbled "there's no cure". Good luck.

[dadzone43]

I think that the MOs remain in strong denial about the side effects of their medications. The metric of the MO is survival-months. Mine tends to dismiss the side effects or tells me that "lifestyle adjustments" will take care of them. What lifestyle adjustment will take care of neuropathy????????

[gleason9guy in reply to dadzone43]

Well, exactly. And you bring up a good point. I've experienced neuropathy for over two years. They ran an MRI last month and it showed my lumbar with some degenerative issues normal for someone my age. Now, he attributes everything to the lumbar and insists that I do physical therapy. And I'm thinking he's nuts. Because the pain and sensation that I'm feeling are in no way descriptive of some minor lower back issues.

[Zee5]

I feel for you. I'm about to do a 7th Docetaxel "juicing" and my feet are definitely affected with numbness. I found this creme called "Diabasens" and it does help. Can buy it on Amazon. Good luck.

[dadzone43]

Lumbar radiculopathy pain is very different in quality from neuropathic pain. Electrodiagnostic testing by a neurologist can often demonstrate the difference.

[dadzone43]

It is well known in the medical literature that the taxols cause neuropathy. Any oncologist knows this. I do not understand the close-mindedness.

[j-o-h-n]

Here's what I take for my peripheral neuropathy:

1 Neurontin/Gabapentin 600mg twice a day

and

1 Duloxetine (Cymbalta) Hcl Dr Caps 30mg once a day.

Somehow neuropathy (for me) is a lot like my Tinnitus (ear hissing) if you ignore it, it seems to fade away....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/18/2019 5:32 PM DST