How much neuropathy is tolerable?

beccabtown

Update

I found out today that my current dose of gabapentin is only 1/3 the maximum dose. I have a call in to my doctor about increasing it. From what I've been reading, Lyrica is much more effective, but you have to fail at the maximum dose of gabapentin before insurance companies will cover Lyrica.

Everything I've been reading about peripheral neuropathy has made me very pessimistic about ever being free of it, but now I'm a little more hopeful about getting some relief from medication.

I know you're supposed to wear the hypothermia booties during infusions to prevent neuropathy, but I feel like they might give some relief from the symptoms, since my feet feel better when I stand on a cold floor. Has anyone used the booties or mittens to treat symptoms of neuropathy once it's developed? I've been avoiding using ice packs directly on my feet because I was afraid that might cause further nerve damage.

christine8822

Neuropathy tips

Hi, I finished paclitaxel/carboplatin sandwich treatment for stage IIIC endometrial carcinoma Dec. 30 2015 and have been NED since. The two permanent side effects are frizzy curly hair and neuropathy in my feet and ankles. No pain, just weird numbness, stiffness, sometimes tingling. I don't take meds for it. I think if there is pain, you should take meds, otherwise, no.  It does not go away, but try not to let it disable you. Do as much activity as you can. Activity sadly won't cure it but activity helps balance and flexibility and function. Walking, cycling and water aerobics are good. I have a friend who had it up to her knees and in her hands so badly she could barely walk and could not drive. She was approved for 6 months of physical therapy which made the difference between walking on her own and walking with a cane. She also was able to drive again.

The hardest part for me still is going down stairs. My feet just don't know where they are exactly and i have to hang onto the railing and walk carefully. Not sure why stairs are so hard.

Bottom line: Take the treatment, as much as you can stand. Neuropathy is annoying but to me a worthwhile tradeoff for my life. Someday I hope they will have better treatments. I'd love to read more about whether cooling the feet can prevent it. 

Lou Ann M

beccabtown said:

Update

I found out today that my current dose of gabapentin is only 1/3 the maximum dose. I have a call in to my doctor about increasing it. From what I've been reading, Lyrica is much more effective, but you have to fail at the maximum dose of gabapentin before insurance companies will cover Lyrica.

Everything I've been reading about peripheral neuropathy has made me very pessimistic about ever being free of it, but now I'm a little more hopeful about getting some relief from medication.

I know you're supposed to wear the hypothermia booties during infusions to prevent neuropathy, but I feel like they might give some relief from the symptoms, since my feet feel better when I stand on a cold floor. Has anyone used the booties or mittens to treat symptoms of neuropathy once it's developed? I've been avoiding using ice packs directly on my feet because I was afraid that might cause further nerve damage.

Ice booties

I used the ice booties all the time after nueropathy started.  It did keep it from getting any worse and I don't think it caused any more nerve damage.  Mine has not gone away,but with Gabapentin and Lorazapqm at night, I hardly notice it anymore.   but I have had over 25 rounds of Taxol altogether and my oncologist doesn't believe that it will go away now.

Hugs and prayers, Lou Ann

beccabtown

Lou Ann M said:

Ice booties

I used the ice booties all the time after nueropathy started.  It did keep it from getting any worse and I don't think it caused any more nerve damage.  Mine has not gone away,but with Gabapentin and Lorazapqm at night, I hardly notice it anymore.   but I have had over 25 rounds of Taxol altogether and my oncologist doesn't believe that it will go away now.

Hugs and prayers, Lou Ann

Thank you, Lou Ann. Maybe I

Thank you, Lou Ann. Maybe I will invest in a pair of booties. Glad to hear that you've found a way to manage it.

Rebecca

beccabtown

christine8822 said:

Neuropathy tips

Hi, I finished paclitaxel/carboplatin sandwich treatment for stage IIIC endometrial carcinoma Dec. 30 2015 and have been NED since. The two permanent side effects are frizzy curly hair and neuropathy in my feet and ankles. No pain, just weird numbness, stiffness, sometimes tingling. I don't take meds for it. I think if there is pain, you should take meds, otherwise, no.  It does not go away, but try not to let it disable you. Do as much activity as you can. Activity sadly won't cure it but activity helps balance and flexibility and function. Walking, cycling and water aerobics are good. I have a friend who had it up to her knees and in her hands so badly she could barely walk and could not drive. She was approved for 6 months of physical therapy which made the difference between walking on her own and walking with a cane. She also was able to drive again.

The hardest part for me still is going down stairs. My feet just don't know where they are exactly and i have to hang onto the railing and walk carefully. Not sure why stairs are so hard.

Bottom line: Take the treatment, as much as you can stand. Neuropathy is annoying but to me a worthwhile tradeoff for my life. Someday I hope they will have better treatments. I'd love to read more about whether cooling the feet can prevent it. 

Thanks for the info

Thanks for the information, Christine. I've been wondering whether stretching exercises would help but frankly I find the "crackling" sensation of curling my toes very unpleasant. I need to get the stabbing pain under control before starting to exercise more, although I do have a referral to an exercise program for cancer survivors.

During treatment (also sandwich regimen for stage IIIC), I also wanted to get the full dose of carbo and Taxol as long as I seemed to be tolerating it--and I didn't want to change to other drugs that I might not tolerate as well. On the other hand, no one talked to me about neuropathy as a potential long-term effect. Now I've learned that something like 30%-40% of cancer patients who've had these drugs end up with temporary or permanent neuropathy.

Anyway, today's a good day.

derMaus

More Questions, Thanks!

This thread is very timely for me, and I wonder if I might get some additional insight. I'm two weeks away from my 6th and final round of the standard carboplatin/taxol regimen, and have intermittent tingling and numbness in my heels, creeping up toward the ball of the foot. One foot is more affected than the other, but that foot also has plantar fasciatis on and off.  I havent had any pain or loss of dexterity in my fingers, but have had a diminshment in my ability to differentiate items by feel (e.g., takes me longer to find things in my purse because I can't exactly feel them in the same way). My fingers also tingle when I using hot water (I have a tankless heater so it  doesn't get all that hot). Again not pain, but just a tingling where none existed before. My question: is this something I should be concerned about? The doctor asks, and I tell him, but the general impression I get is that if you're not having active pain, there's not much to be done. Reading these posts I'm extremely grateful I *don't* have active pain, but am wondering if the after effects continue to come on and I'm actually having more damage than is currently registering. Hope that makes sense...any feedback is appreciated

beccabtown

derMaus said:

More Questions, Thanks!

This thread is very timely for me, and I wonder if I might get some additional insight. I'm two weeks away from my 6th and final round of the standard carboplatin/taxol regimen, and have intermittent tingling and numbness in my heels, creeping up toward the ball of the foot. One foot is more affected than the other, but that foot also has plantar fasciatis on and off.  I havent had any pain or loss of dexterity in my fingers, but have had a diminshment in my ability to differentiate items by feel (e.g., takes me longer to find things in my purse because I can't exactly feel them in the same way). My fingers also tingle when I using hot water (I have a tankless heater so it  doesn't get all that hot). Again not pain, but just a tingling where none existed before. My question: is this something I should be concerned about? The doctor asks, and I tell him, but the general impression I get is that if you're not having active pain, there's not much to be done. Reading these posts I'm extremely grateful I *don't* have active pain, but am wondering if the after effects continue to come on and I'm actually having more damage than is currently registering. Hope that makes sense...any feedback is appreciated

My experience

I did not think I had neuropathy per se while I was in treatment. I had a different kind of leg and foot pain for several days after each infusion, and I had a few periods of tingling in my hands to the point that it concerned me. My doctor kept urging me to tell her if I had any problems in my feet or hands. I told her when I'd had some tingling, but to tell the truth, I minimized the symptoms a bit because I didn't want her to change my chemo dose or drugs. In any case, the symptoms I had always went away completely after a few days, so I thought I was okay. It came as a complete surprise to me that I started developing real neuropathy after my last round of chemo. (I don't understand why it works that way--how does your body know you're done with chemo? I suppose it's that they've calculated the doses to reach maximum exposure at the borderline of toxicity or something.) I don't have any of the conditions that are supposed to predispose you to severe neuropathy (diabetes and previous nerve issues in the feet and legs are the main ones).

Sorry that I'm not offering a more positive outlook. Most people who have neuropathy do not have such severe symptoms, and for most who get it, it goes away in a few months. I'm still hoping that will be the case for me.

Especially since you have had plantar fascitis (though I don't know that's relevant, I'm just guessing), you could still talk to your doc about using hypothermia mitts and booties during your last infusion. I wish that I had done so. Can't believe doctors don't discuss this with patients from the beginning.

Congratulations on approaching the end of chemo! The end is in sight!

 

derMaus

beccabtown said:

My experience

I did not think I had neuropathy per se while I was in treatment. I had a different kind of leg and foot pain for several days after each infusion, and I had a few periods of tingling in my hands to the point that it concerned me. My doctor kept urging me to tell her if I had any problems in my feet or hands. I told her when I'd had some tingling, but to tell the truth, I minimized the symptoms a bit because I didn't want her to change my chemo dose or drugs. In any case, the symptoms I had always went away completely after a few days, so I thought I was okay. It came as a complete surprise to me that I started developing real neuropathy after my last round of chemo. (I don't understand why it works that way--how does your body know you're done with chemo? I suppose it's that they've calculated the doses to reach maximum exposure at the borderline of toxicity or something.) I don't have any of the conditions that are supposed to predispose you to severe neuropathy (diabetes and previous nerve issues in the feet and legs are the main ones).

Sorry that I'm not offering a more positive outlook. Most people who have neuropathy do not have such severe symptoms, and for most who get it, it goes away in a few months. I'm still hoping that will be the case for me.

Especially since you have had plantar fascitis (though I don't know that's relevant, I'm just guessing), you could still talk to your doc about using hypothermia mitts and booties during your last infusion. I wish that I had done so. Can't believe doctors don't discuss this with patients from the beginning.

Congratulations on approaching the end of chemo! The end is in sight!

 

Thanks Becca. Any feedback is

Thanks Becca. Any feedback is good!  I don't rate it for positive or negative, just 'real' - as in really experienced by someone who's been through it. I appreciate your taking the time to reply. B

christine8822

beccabtown said:

Thanks for the info

Thanks for the information, Christine. I've been wondering whether stretching exercises would help but frankly I find the "crackling" sensation of curling my toes very unpleasant. I need to get the stabbing pain under control before starting to exercise more, although I do have a referral to an exercise program for cancer survivors.

During treatment (also sandwich regimen for stage IIIC), I also wanted to get the full dose of carbo and Taxol as long as I seemed to be tolerating it--and I didn't want to change to other drugs that I might not tolerate as well. On the other hand, no one talked to me about neuropathy as a potential long-term effect. Now I've learned that something like 30%-40% of cancer patients who've had these drugs end up with temporary or permanent neuropathy.

Anyway, today's a good day.

Yep

Good luck Becca. Ha! I know that "crackling" feeling in the toes. All the best on your exercises.  Also try water aerobics with water shoes on; it will feel good, not bad. Forgot to mention I also do Tai Chi once a week and it REALLY helped with the balance issues. 

I read that it's more like 70% of us have neuropathy permanently, so we have a lot of company. Yay. 

 

sshhaarrii

During treatemt, I too, had

During treatemt, I too, had what I thought maybe was the start of neuropathy, but I was not so sure. The older we get, it seems the more everyday achs and pains we get and that chemo beats you down. I also have some autoimmune issues. So its was hard for me to know.

I was scheduled for 18 weeks of carbo/taxol infusions, but only completed 16. I caught a bug at infusion #16, and the dr said that was enough.

And now, almost 7 weeks out of chemo, I'm feeling it, something. In my right footl; arch cramps and ankle pain, in my left foot; ankle pain, my left leg: calf cramps, whole leg tingles sometimes. Both legs: ache at night, sometimes. My left hand; pinky and ring finger are weak. Right hand: and this just started a couple of days ago, pain and swelling in my index finger nuckle. The foot and leg issues seem to come mainly at night, but the issues with the hands seem to be constant.

Is it really neuropathy? Is it an autoimmune flare? Or a combination? If its an autoimmune flare it will fade away.

I have a dr's appt in a couple of weeks, hopefully, by then, some or all of these issues will fade.

 

 

Lou Ann M

sshhaarrii said:

During treatemt, I too, had

During treatemt, I too, had what I thought maybe was the start of neuropathy, but I was not so sure. The older we get, it seems the more everyday achs and pains we get and that chemo beats you down. I also have some autoimmune issues. So its was hard for me to know.

I was scheduled for 18 weeks of carbo/taxol infusions, but only completed 16. I caught a bug at infusion #16, and the dr said that was enough.

And now, almost 7 weeks out of chemo, I'm feeling it, something. In my right footl; arch cramps and ankle pain, in my left foot; ankle pain, my left leg: calf cramps, whole leg tingles sometimes. Both legs: ache at night, sometimes. My left hand; pinky and ring finger are weak. Right hand: and this just started a couple of days ago, pain and swelling in my index finger nuckle. The foot and leg issues seem to come mainly at night, but the issues with the hands seem to be constant.

Is it really neuropathy? Is it an autoimmune flare? Or a combination? If its an autoimmune flare it will fade away.

I have a dr's appt in a couple of weeks, hopefully, by then, some or all of these issues will fade.

 

 

Always best to ask your doctor

I have had nueropathy in my feet for almost four years now.  My did start about six weeks after I finished frontline treatment.  It is always worse at nigh, but mine is very much like a very bad sunburn, sometimes with a needle and pins feeling.  I do kno,what different people react differently.  Cold helps my feet, where as my sister-in-law needs heat on her feet.  Her Neuropathy is caused by diabetics though

Hugs and prayers, Lou Ann

MAbound

beccabtown said:

Hello Oldbeauty, I hope you

Hello Oldbeauty, I hope you get some answers and some relief.

My problems with neuropathy have been almost entirely post-treatment. (I don't understand how that works, unless it's just that you hit a certain level of toxicity with six infusions.) During treatment I had about a week of pain after each of my six infusions of Carbo/Taxol, sometimes numbness in my feet or hands. Since it went away each time, I thought I was doing well. My oncologist always asked about it and was especially concerned about any neuropathy in my hands since my livelihood depends on using a computer. I would not have wanted her to reduce the dosage of the chemo drugs.

After my last infusion, which was in December, I had several weeks of leg and foot pain that was much worse than what I had after other treatments. That turned into neuropathy like what you describe: a feeling of swelling on the soles of my feet, which to me is very unpleasant; extreme sensitivity to touch on the soles and tops of my feet; and occasional shooting pains in my feet. I've also had weakness in my legs and am quite wobbly--I walk with a cane everywhere and have fallen a few times. I'm taking gabapentin, 600 mg/day; I think that helps with the pain, although it doesn't eliminate it. Swelling and leg weakness are side effects of the gabapentin, so I can't tell whether these are due to the neuropathy or the medication. I'm also taking B6 and B12, and just went back to taking Claritin every day (I stopped it for several weeks when I started taking gabapentin).

I basically consider myself disabled right now and only hope that it is temporary. I didn't expect to be in this situation after treatment. I don't feel my oncologist has been very concerned about these effects. Maybe she's right that we just need to wait a few more months to see whether things are going to improve. I have been wondering whether I should see a neurologist.

Please do let us know what you find out at your appointment.

Be careful with B6

I'm rather cautious about adding supplements to the prescribed medications I take because it's such an unregulated industry and there is so much misinformation out there. I have a subscription to www.consumerlab.com and really recommend it for anyone taking supplements (and really...who doesn't?). It's like Consumer Reports, but just for vitamins and supplements. Even if you are working with a Naturopath and getting good advice, I still think this is a really worthwhile subscription.

As regards the B6 and B12 you've been taking, B12 is safe to take and supplementation is actually needed at our age and circumstances, whereas B6 can actually be harmful if you exceed the upper recommended limit of 100mg/day, particulary to the nervous system. That upper limit is all inclusive of what you get both from what you eat and what you get from a supplement you take.  Enough B6 is easily obtained from food, so if you are also taking a supplement, you really need to be keeping track of what you are getting in the food you eat to avoid being in excess of that upper limit. Most supplements actually exceed that upper limit all by themselves.

Most of us over 50 need to start taking a B12 supplement because our bodies start progressively producing less stomach acid as we age and that's a necessary component for us to get B12 from food sources. Anyone with GERD or taking antacids regularly (anyone take Tums as a Calcium supplement?) or on Metformin also need B12 supplementation as those drugs interfere with getting B12 from food. Finally, cancer itself and it's treatment converts up to 80% of B12 from it's active to inactive form, so a B12 supplement can help with nerve issues like neuropathy and is perhaps why some oncologists tell us to start taking a B complex when we start chemo, at least that's what mine did and that got me started finding out more about it. His advice was in the right direction, but because of what I learned, I stopped the complex and just did the B12, including once a month injections from my primary during chemo. My lab work showed my B12 levels as being high, but they included the inactive B12 with the active for the level. It's not a scientific result, but the horrible neuropathy I developed after the 1st round of Taxol and Carbo (it was severe and unrelenting burning pain up to my thighs) lessened after about 2 months. It's my opinion that the ice booties and slippers I wore from the second treatment on kept the neuropathy from worsening and they sure helped me sleep at night, too,  if nothing else. 

The neuropathy I developed during chemo is still with me and I finished chemo Aug. 31, 2016. It's more of a minor burning sensation than a numbness and tingling issue for me. I think I'd rather have the numbness and tingling, to tell the truth. I'm always aware of it, especially when I can't fall asleep at night, but it's at a level I can live with without medication or even using the booties. It seems to intensify with the more time I spend on my feet, so it does slow me down activity-wise.  I'm hoping it will lessen down the road, but there's no way to know until time passes. 

 

Kamushka

Neuropathy after chemo

My chemo treatments gave me the joint and muscle pain. Now I  am suffering neuropathy in my hands and feet after six rounds of carboplatin and taxol.  My fingertips either hurt (pins and needles or stabbing pain) or go numb or feel frostbitten.  Always worse at night.  They lowered the taxol after the fourth round because pain was so bad...and I can tolerate pain. They had me on the steroid Dex-something or other and some weeks had me continuing it seven days! My last treatment was Feb 21 and I am still trying to get my sugar under control from the steroids throughout and the massive amount they gave me when I got the allergic reaction that last day......they shot me three times before the doctor came in and told them to SHUT THE TAXOL OFF !! Midway thru my treatment the doctor told me to have the nurses give me ice packs...I had them under my feet and I held them..... I think it helped...it certainly didn't hurt (except that it was sooo cold).  Wish I would have done it from session one.  Speak up for yourself....be your own advocate! If I had it to do over again (which I pray I don't) I am going somewhere else! If my neuropathy continues especially, I might try acupuncture.

Pennielane

Some neuropathy tips

Hi -- I'm new to this board but not to neuropathy. I had two rounds of cisplatin, followed by six rounds of carboplatin/taxol, and the neuropathy was significant. I found a product called Penetrex that helped on my feet. I also wore frozen socks during treatment which may have helped, there are some studies that indicate it might help. You can get socks with gel packs that freeze.. sometimes my feet still tingle but not like during the chemo. My hands fall asleep while I am sleeping still. After treatment you can take vitamin B to help with the neuropathy, I think it helped me, but don't take it for more than a month, it can cause other issues. Wishing you the best!