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any suggestions on neuropothy?

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

hello hope everyone is feeling fine on this first day of sept.i was wondering if anyone has had bad problems with neuropothy after being done with treatments.my last treatment was july 16th and still have the mouthsores but it is this darn neuropothy that is really hurting.my onc gave me some meds for it i have been taking them for 1 week 3 pills a day and it seems as though it is getting worse.anybody who has any suggestions on how to ease this pain would greatly be helpful.thanks and Godbless......johnnybegood

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

Sorry to hear of your discomfort. I can't offer any options for you. I haven't had to deal with the neuropathy, but I can only imagine how uncomfortable it is.. Hopefully someone else on this board will have more ideas... Wishing you all the best. Petrina

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I've heard some folks mention taking vitamin B-6 to help ease symptoms. You might try this.

They switched me over to Magnesium Sulfate by IV during my treatments and when they did, it made my neuropathy and cold sensations much more manageable.

And it may just take time for the effects to ease up too. Unfortunately with the Oxaliplatin, each dose you take "can" make the side effects permanent...doctors don't know which dose that would be as we all react differently of course.

Oxy bombed me on #8 and we let it go; side effects have gone away for the most part - tingling sometimes in the feet.

I've been reading your posts for quite awhile and I know you are hurting - wish there was something I could tell you or give you - but as I said above try the B-6 vitamins and see if they help you. I know Annabelle/Kim does this and she says she is doing good with it.

Hope that helps - Craig

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

for the replys.i have been taking a vitamin B complex that has all of the B vitamins in it.i have been taking them for about a month now.maybe it will just take time.i did 10 treatments of the toxic oxy so in all it was 5 months.right now i am currently in the process of trying to get ss disability my job only allows you to be off for 1 year then they terminate you.as of sept 16th i will no longer be employed.i dont know how long this neuropathy will last and my job is factory 12 hours a day on my feet.there is no way i can do that the way my hands and feet are.enough complaining and thanks for listening.i really love my semi colon family dont know what i would do if i hadnt found this site.Godbless....johnnybegood

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

My neuropathy has been horrible too. I had to quit after 11 treatments with the oxi because it had become unbearable, especially in the mouth. Unfortunately, a year after treatment, i still have neuropathy. It got progressively worse for months afterwards, and now it's only really bad in my left leg, both feet, and my mouth. Especially the salvary glands and throat. It doesn't even have to be cold that triggers it. Some drinks make it very bad. I can no longer drink wine because the neuropathy lasts for several minutes, and even drinking water sometimes makes my throat close up, and feel funny. I had that neuropathy test (EEG), and several other tests that confirm the leg neuropathy, but there isn't any way they can test my mouth. The doctors say the neuropathy in my leg may go away in five years. It's funny that in this warm weather, it seems to trigger the neuropathy too! I just recently had a doctor prescribe me neurontin. I haven't tried it yet. He's giving it to me for pain, but i've heard of other people taking this for neuropathy. I don't know if it works. I think it does for some.

Sometimes neuropathy will go away, and sometimes it never will. It just depends on the person.

I hope yours goes away. If it doesn't, you do seem to learn to live with it to an extent. Try to avoid the things that trigger it (hard to do with water)!

Hugs,
Krista

afretiredky's picture
afretiredky
Posts: 28
Joined: Jul 2009

My onc told me I was too young to worry about neuropathy (ok, I'm 51). However, I have developed it (so I'm not young enough apparently). In my arms, hands, calves and feet. I didn't think about the mouth, but maybe that's what going on with my tongue and salivary glands. I also have a hard time drinking anything cold or room temp. Hot chocolate has become my drink of the moment. Hot tang on occasions. I'd much rather have a frozen strawberry daquiri...just sayin'.

They are giving me mag sulfate and calcium by iv before and after my oxi. It doesn't seem to have worked this time so well. If I bend my foot up, it freezes and I have to push it back into place. This is quite entertaining when I get bored.

After questioning the onc again at this most recent visit, he did say that the neuropathy for some people just never goes away. For some it will diminish over time. There is no telling either way.

Hopefully as time passes, it will either go away or be greatly reduced to where it doesn't bother you so much.

~~Terry

bobymann
Posts: 1
Joined: Jul 2009

For 2 years before my diagnosis, I was taking Cymbalta for diabetic neuropathy. When I started chemo I was warned not to touch or eat anything cold ( I like to chew on ice) Well no neuropathy happened. My Family physician told me it was probably from the Cymbalta. My sister had neuropathy in her shoulder and she talked to her doctor about it and he prescribed Cymbalta and it worked for her. Ask your MD

hewittr
Posts: 4
Joined: Mar 2009

Hi this is my first time on. Diagnosed with colon cancer, Stage IIB on Febuary 27, surgery on Mrrch 3rd. Everyone was on the fence about whether or not I should have vhemo. Since I was scared to death and blind sided by this, I started chemo. After 3 treatments (horrible reactions) and a second opinion, I decided to stop the treatment.

It is September now. My two ring fingers on both hands have become numb and tingling in the last few weeks and mouth sores have returned. Luckily the baking soda rinse is helping the mouth sores but the finger numbness is driving me crazy. My onc says it is a reaction from the oxyplatin. May go away.....may not. May come & go. As long as it doesn't get worse, she will monitor me.

Right now, I go in every three months for CEA tests and CT scans every 6 months. I just had a follow up colonsocopy and all looks good. What is confusing me is the CEA test score. It just came back at 1.10. The day I was diagnosed it was 1.95. While I was on chemo it registered twice at 2.50. I am not understanding how this test is going to help me get diagnosed if cncer comes back. I read that anything under 3.0 is good but when the day I had colon suregery my CEA test score 1.95. Can anybody answer this for me. My doctor says it is not a true indicator but a steady rise would indicate a problem. I don't know what to think.

My next concern is getting a good nights sleep. While on treatment I was put on Xanax tohelp me with the anxiety of all of this. I continued on the Xanax after treatment because it helped me sleep through the night. My onc did not renew the Xanex but my family doctor gave me Ambien to help me sleep. Did not help and made me sick. So, now I don;t know what to do. I don't want to become dependent on Xanex but I need to sleep. If I could just get my mind to stop when I try o go to sleep that would be great. I worry that ithout a good night's sleep my health will go down and cancer will come back. I know it may not be logical but I can't help it. Any suggestions? A promise that cancer will never come back would work great....but somehow I don't think I will ever get that! :)

Robin :)

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I finished post op chemo around April and I still have the tingling feeling in my fingers and my toes are still somewhat numb. But, I can still pick my nose and walk , and sometimes at the same time. The cold sensation went away about 3 weeks out of Oxaliplatin Leucovorin, and 5fu treatment. I did 12 in all over a 6 month period but had to quit after the 10th with the Oxal because of neuropathy. I don't mind the limp, I don't mind the pain in my feet, I still work and will probably work until I die but I use the neuropathy as a reminder of what I have beaten, and nerves do grow back but like 1 mm a day or week so it will be a slow recovery time. JBG, I am very sorry that the nerve damage has hurt you so bad but that is just something we have to suffer through to save our lives and the days do get better. I can actually feel a little difference when I dig deep into my nostril...LOL, OK enough of the clowning. After I sit for a while its hard to get my feet going or driving can only be for 2 hour max periods and I have to get out and stretch. But in the grand scheme of things it sure does beat the alternative right now...
and Robin, Ask your Doc about Flourextine (Prozac). It works wonders for me. It keeps my emotions intact, allows me to function, and it keeps my family a lot happier because I am not the *** I use to be because of my diagnosis. It takes about 2 weeks before you start to notice a change but others around you will notice before you do. It keeps you from dwelling on the cancer, it allows you to actually "Live".
As far as cancer coming back, It has done all to me it can. I am not allowing it back. It has caused enough trouble in my life. It was here just long enough for me to grow to hate it and everything it does to the patient and their families. I will not allow it back in my house. That is the way you,Robin should start to think right now. Be strong and don't allow something as stupid as cancer to run or ruin your life.....Love to you both JBG and Robin...........Clift

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

...You just crack me up here LOL...great advice with humor, the best!

Hugsss!
~Donna

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I love you too....don't want ya to feel left out............ :)..........Clift

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Johnnybegood,

In addition to the B-6, the PA in my oncology office recommends taking alpha lipoic acid and also L-glutamine. These can both be found in the vitamins/supplements section in most stores, including wal-mart. I just found this info out after changing oncology offices/doctors in June. I'm not having so much of a problem of numbness after all this time, but I do get pain in my feet, which he thinks may still be neuropathy. I hadn't associated it with that earlier. My former onc's only advice was to take Lyrica, which I never did (a friend who took it claimed it gave her more chemo brain than any of the chemotherapies ever did). She also said the Lyrica actually increased the pins and needles feeling, as it is more for pain related neuropathy, not the numbness.

Since I didn't know about the alpha lipoic acid or glutamine when I was on Folfox and dealing with the pins/needles neuropathy, I just took B-6 at the time. You mentioned that you're already taking that. The normal feeling in my fingers/hands came back to probably 95% normal within 6 months. Today, a year and a half later, my hands feel completely normal and my feet are much, much better than they were (although it is still numb in between my toes). and I guess this pain I get sometimes in my heels could be neuropathy related. So, for this, I am taking the alpha lipoic acid and glutamine.

Try them- they can't hurt you, but will hopefully help!

Lisa

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I agree with Lisa about the supplements. I was taking B-6, B-12, plus a multiple B in addition to the L-glutamine and alpha lipoic acid. I also take R-lipoic acid which is more expensive but research has shown that both types can be helpful. I found the L-glutamine 30 mg/day in 3 divided doses to be very helpful. L-glutamine ahd been in clinical trials and proven to be effective. I also have just found liposomal glutathione which has been researched to be effective with neuropathy. Additionally I receive acupuncture, and infrared therapy to the soles of my feet at physical therapy. My leftover neuropathy is Grade 1 and is now slightly better at 3.5 months out from chemo. It did get worse after chemo when I at first I didn't have as much pins and needles, numbness, and balance issues.

Leslie

walkingnutritionman
Posts: 15
Joined: Aug 2009

My wife developed pretty bad neuropathy after 12 cycles of Oxaliplatin. After a month of frustrating pain and tingling in her legs and fingers, she started taking acetyl-l-carnitine which can be purchased on-line or in stores that carry nutritional supplements. (The particular brand she has been using is Jarrow Formulas.) Immediately after starting it, she noticed improvement; and the process of improvement has been slow and gradual over the last 6 months. There is no question in our mind that this has helped her. Here is just one of a number of references upon which we based our decision to give this a try: (You can look at the abstract of the article by copying the title or the web page address below into a Google search.)

Symptomatic and neurophysiological responses of paclitaxel- or cisplatin-induced neuropathy to oral acetyl-l-carnitine:

http://www.journals.elsevierhealth.com/periodicals/ejc/article/PIIS0959804905004296/abstract

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

for all the info i will write all this down and go uout shopping.i have got to do something as i about fell 3 times yesterday because i cant feel the bottoms of my feet and sometimes i feel as if i am stumbling around.thanks again and everyone have a safe holiday weekend...Godbless.....johnnybegood

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