Topic: Living with extreme neuropathy

Nov 16, 2016 11:24PM dtad wrote:

Hi there. So sorry you are suffering with neuropathy. I have an autoimmune sensory peripheral neuropathy. I believe it can be the worst pain experienced, except of course child birth! Have you tried Cymbalta? Its an anti depressant that works for neuropathy. it helped me more than the classic neuropathy meds. Good luck...

Nov 17, 2016 12:49AM SerenitySTAT wrote:

I hope it goes away for you like it did for me. My peripheral neuropathy was in my feet and started during Taxol. B12 (1000 mcg) and Reactine helped me. My peripheral neuropathy stopped about 5 weeks PFC.

Others have taken B6 (100 mg max) and L-Glutamine. You can check the Weekly Taxol thread for recommended dosages on L-Glutamine.

I still take B12 and will continue as long as I feel this fatigue. I finished rads 3 weeks ago.

Hope you feel better soon.

Nov 24, 2016 08:27PM Jbakerwebb wrote:

unfortunately I wasn't even aware this was a potential side effect. Mine started ever so slightly after 2nd Taxol and my onc wasn't too concerned. Then boom 3 days after last Taxol (#4) it came on with a vengeance! I must say mine has subsided substantially but still a problem for me. I'm just thankful for even the smallest amount of relief everyone is different. It can be permanent. I've found all this out after the fact. I pray your daughter can find some relief. I'm taking tons of b vitamins (b12 and b complex)and alpha lipoic acid which has helped tremendously and gabapentin drug.

Dec 1, 2016 02:49PM Cdwind wrote:

I am experiencing severe pain in my hands and feet. I do have neuropathy in my feet. The pain is different. I finished chemo 2/16 and radiation 5/16. The pain can be quite debilitating. I have seen my oncologist, she now has referred me to neurologist. Also a pain doctor. I am so tired of this pain. Anyone else have these problems so long after treatment

Dec 2, 2016 12:56AM jcpriest0469n wrote:

so sorry Cdwind,it's been 3 yr now and my feet have calm down. I take a muscle relaxer and coconut juice add to my smoothie in the morning. My hand are acting up lately out of the,blue. Maybe it's the cold weather, but it's mostly frustrating. Good luck on your search.

Dec 2, 2016 01:55PM - edited Dec 2, 2016 02:07PM by snowsogal

Dec 2, 2016 02:18PM - edited Dec 2, 2016 02:19PM by snowsogal

Dear C wind:

Yes, I take Nerventrax a neuropathy supplement. I have more numbness, itching, and pain on my big toes. My treatments were two years ago.

I went the dr route, but nothing helped.

The supplement to regenerate the nerves.

I don't know if this is going to be permanent or not

Jan 10, 2017 12:42AM snowsogal wrote:

Hi Gardengypsy:

Yes I am shocked too, I was hoping that after chemo left my system that neuropathy would have left also, seeing that they decreased the Taxotere for the last four doses. They did this because Lyrica and Neurontin did not help at all.

Unfortunately, I understand now that we pay a high price to be in remission.

In fact my left side of my face is still swollen a little from the chemo, as well as my collar bone when they removed the port. It is amazing the changes that occurr in our bodies after this cancer journey.

I am glad that Neurontin and Iprofren works to take the edge off the pain.

Take Care

Jan 10, 2017 11:14AM MinusTwo wrote:

Garden Gypsy - the neurologist I went to said they could do all kinds of tests, but it was clear that I had CIPN, so I opted to skip the tests. My feet were numb like blocks of ice but I didn't have much pain. She said it might gradually get better over 2-3 years. She also cautioned that "better" means better that it is when the problem starts - not back to where you were before chemo. A number of us have had some improvement, but those that I know are mainly dealing with lack of feeling and not constant pain.

Jan 11, 2017 12:23AM snowsogal wrote:

Gypsy,

The natural supplement is something I had to research myself; because I can not handle SE of most Rx meds. I will say that the itching is more manageable, which is a small fiber sensory neuropathy that I have acquired. I do not have so much of the burning and shock like pain that I had.

Your dr will not tell you about this, unless he is a Naturo Path Dr; I just learned Conventional Drs have been taught symptom control with diseases not a cure.

I went to a neurologist and had the Nerve Conduction Study, and it did not confirm that I had neuropathy, but with their evaluation tests that they did that was the only way it was comfirmed. She tried Cymbalta, but did not work. Gave me a pain dr referral that all care was not covered.

So, I asked a friend who she went to. I called that dr up, they did their testing and said I had chemo induced polyneuropathy. This means more than just one set of nerves involved.

Tried Lyrica again and it gave me a reaction. Then they gave me Nucyanta ER, pain med. When they tried to imcrease it it just drugged me up. Besides that I had to drive to 8 different pharmacies to find that particular low dose of that drug. I felt too much stress going there so I canceled my last appt and never returned. The only supplement the pain dr gave me was Metanax, but the Ins stopped covering it, because it was not a rx drug. I felt some energy from it, but it was for only two months

I only went about four months, and quickly saw that these people were not ever going to get better. I only saw the actually dr once and then the CNP handles it from there. All they wanted to do is give me narcotics, and I was not wanting to live like that.

They give you a drug screen every other time. They may call you anytime and request you bring in the pills and count them. This is a random call, and usually a extra visit. You do not get refills called in. If you have problems with the meds, it requires another office visit, to get it taken care of.

I just did not like the whole system. I was treated like a number and not with dignity.

This was my experience, maybe yours will be positive. My mom told me something, before God took her 2014, they give you one medicine for a condition, and they have to give you another for the side effects of the first med. She was absolutely right. That has been my experience, and I am not going that route.

I can relate to pure exhaustion and insomina or sleep issues. That is all I have ever known since my 20's. They can't figure that out either. Did sleep study and did not detect the reason why?

I take Vervain for sleep.

Having chemo has messed me up in so many ways. I just hate it.

Take Care

Jan 11, 2017 01:02AM snowsogal wrote:

Jbakerwebb: Please be sure the supplements do not interact to with the Cymbalta. I take supplements too.

Use to be drs would be concerned about supplement and rx med interactions. I find here they don't even seem to care.

Oh, how the medical system has changed. I have seen it go downhill here with the primary care DRS.

I am looking at essential oils now to help with neuropathy. In fact, I have ordered an essential oil balm. I should receive it today.

Have you had any strange skin eruptions that just start to itch and they go away? I have had problems with this since my treatments? Like right now, I am just sitting here, and my right hand started to itch. I look down at my hand and see; I have a small bump that is really itchy, this happens a lot and absolutely maddening.

Is there a post forum already created for this? Does anyone know

Jan 11, 2017 01:24AM snowsogal wrote:

Serenity: I am so glad your neuropathy reversed itself. Mine started during Taxotere, the oncologist decreased the dose the last four doses, but mine has not reversed. I guess I was too far long with the treatment to stop, and try another chemo. This was back in 2014.

I do take a specific neuropathy vitamin with B vitamins and R-Alpha Lipoic Supplement. I have seen the nerve itching decrease, but not the numbness or lack of feeling.

We pay a high price to be in remission or cancer free with are " new norm". Sometimes it just angers me

Jan 17, 2017 09:16PM gardengypsy wrote:

Snowsogal~ Thanks so much for taking the time to share your experiences. I think that a short-term disability claim is in my near future. I need the time to focus on my sleep, exercise and supplement regime without the complications of work-related fatigue and stress. Never heard of Allsup.

Today, finally, is my neuro eval. Along with many other questions, I will ask about the B vitamins.

It seems like many of these pharma and natural products will work for some, yet others do not get similar relief. All the more reason to keep sharing ideas

Jackie~ It seems like a trip to a naturopath or integrative health center isa pretty important step for us to take. I worry about the expense.

Has anyone out there tried yoga therapy?

Have a good day, ladies..

.

Jan 25, 2017 12:11AM snowsogal wrote:

Hi Jackerweb: About 300 mg a day. Please note it needs to be R-Alpha Lipoic Acid. I buy my supplements at

www.lifeextension.com

In fact, if you have a membership. You can have a 30 min consultation over the phone with their oncologists or any specialist for free. It has been very beneficial for my husband and I. If dr is busy you leave a msg and the best time to call, and they will call you back.

Hope this helps

Aug 6, 2017 09:51AM Katjadvm wrote:

Hi everyone. I am a year out from chemo. I developed a peripheral neuropathy and they decreased my final two chemo doses. I work with a naturopathic oncologist and she has me take 15 grams of glutamine twice daily and 300 mg of R Lipoid Acid twice daily. I had initially weaned off of the glutamine about a month after chemo, but then the tingling in my hands returned and I restarted. If I take the glutamine, I don't have any neuropathy signs. Just wanted everyone to know.