Vent about Permanent Neuropathy
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kaz27 I have tried gabapentinwhich is the generic neurontin. My advice is to start out with a very low dose and stop when you get some relief. That way hopefully you will avoid most of the SE. There is also Lyrica which is in the same family. Good luck. PS I also take a natural supplement. PM me if you want to talk about it. Good luck....
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tessu I'm so sorry you are going through all of this. I've had neuropathy for 15 years so I hear you. Acupuncture can help but for me I had to keep going to get relief. I'm sure your neuropathy is from the chemo. Just curious if you have had any other tests to see if you are deficient in anything else that can cause neuropathy. Mine was from undetected Celiac Disease.Just keep trying. Don't give up!
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kaz - I take 50mg B6 in a complex with B12-ok's by my doc. I read that 50-100 is ok, over 100 mg of B6 can sometimes cause more tingling, but u have to ask a doc.
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Thanks, dtad. I am on thyroid supplement, but know the level is ok (checked right before surgery). Also taking vit D and calcium for bones, so they should be ok. I'll ask for a test for celiac next visit.
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Nevermind.
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Had SEs from oral neurontin so I just got a prescriptioncompounded ointment that has gabapentin in it. Seems to be helping the foot pain, but too soon to say how much
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Thank you new members for your thoughtful comments & questions.
I'm almost 2 years PFC. Much of the feeling has come back in my fingers. Thank heavens I can do up my pants zippers again and usually pick up coins. The balls of my feet are still numb but I have some feeling in some of my toes. Usually it's numb half way up my calves. I'm fortunate not to have much pain so I've resisted meds - since there really aren't any to "cure" the numbness. Lately I've been getting leg cramps - mabe un-related. On the recommendation of my neurologist, I take 100 mg B6 and 1000 mcg B12 every day, in addition to what's in my comprehensive multi vitamin.
I have a question about leg swelling. Last week I took my first vacation in 5 years since this BC mess started. I did a lot of walking (or stumping along on my dead feet) and virtually spent 16-18 hours a day that my feet were NOT elevated. 'Normally" since BC I've had my feet up 16 hours a day. Much of the time I couldn't see my ankles, my socks left indentations on my legs & they were very tender. Since I've never had leg swelling before, I imagine it's related to the neuropathy? Anyone else have similar issues? I do have mild breast/truncal LE, but this doesn't seem to present the same symptoms. I plan to keep my feet & legs elevated for a couple of days before I call the doc but I sure hope this won't become another limiting factor as we try to get along with our lives.
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haven't posted here in a while - had a serious fall in June - fractured my knee & and had vascular surgery & compartment syndrome in my left leg leaving me with drop foot - so now my whole leg feels like my feet used too
so i gave in to trying Gabapentin hoping for the best - so far it helps a bit & no real side effects - but all i need is dizziness when i'm relearning to walk - more memory loss or weight gain... Spinal Cord Stimulation was suggested to me - they said it could help with the nueropathy as well - sounds scary but if it eliminates the drugs? has anyone tried this or heard about it??0 -
I have been diagnosed with spinal stenosis recently, back is aching and I have been doing physical therapy for it which is helping
I now think that what I thought was neuropathy (numbness and pain in my feet) was really the beginning of the spinal stenosis
one suggestion is back surgery (not) and the other is shots to my spine, not ready on that yet but it is all very tricky
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Minus two, re: leg/ankle swelling, when traveling, especially airplane rides, but also if you are doing a lot of walking, there will be swelling most of the time as we age. My PCP recommended years ago, after LE in arm and trunk, that I wear the sleeve, and wear light compression stocking while traveling, actually I thought everyone did this after a certain age is reached, I am 74, and was told this at 70. I don't know your age, but wanted to pass this along anyway. I do have neuropathy in both feet, but it was not caused by chemo, my PCP thinks it was from an antibiotic treatment, and the neuropathy when I traveled did not get any worse or any better, of course they could still be related. I hope elevating your feet helps pronto.
Hope you had a good trip, nevertheless.
dsgirl
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Kaz, I have been on neurontin (gabapentin) for about 2-1/2 years. I started at 100mg 3x a day. Eventually I ended up at 300 mg 2x a day. It is helpful, makes it more tolerable, but it will never fix it completely. I don't notice any side effects from it. Some days I can walk like a champ, some days I am hobbling around. If I walk a lot, I pay the price the next day. I miss walking and walking ...
Fun fact ... I had shingles about a year ago. First thing the doc suggested was neurontin (to quiet the nerve endings). At that time I was at the 100mg 3x a day dosage. She said "DOUBLE IT." That was the only thing good about having shingles, I learned I could jack up the neurontin.
I went to a wedding Saturday night. My hubby and I sang during the ceremony, and I wanted so bad to wear heels. I lasted about 15 minutes. My right foot still hurts!
GPDebbie
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dsgirl - thanks for your post. I do & did wear sleeves & gauntlets to fly. Also a compression vest - heavier for flying but still a lighter one all the time. I also wear sleeves to do heavy activities or exercise & even water aerobics. Thank heavens, no flare up of the LE. And no leg swelling from the airplane rides. I'm 71, but have never been told that walking could cause swelling. In fact I've been told just the opposite - walk as much as possible, particularly to get back some stamina from BC treatments. And to get more blood flowing to my 'dead' feet. Sigh!!! Like GirlPower - I miss walking & walking!!!
I have a number of contemporaries who wear light compression stockings but most have diabetes or heart issues or high cholesterol, or other health issues. All I have is cancer (haha). My MO was only concerned about leg swelling while I was on Herceptin due to the heart issues. Guess I'd better talk to my PCP. Thanks again for your thoughts. One of my complaints about various health issues - are they caused by cancer & treatment or just because we're getting older.
My BFF who went w/me was told by MDA that the neuropathy caused her husband's leg & foot swelling. He died last October after fighting pancreatic & esophageal cancer for 4 years.
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Thanks for all your help. I decided not to get my last TC due to neuropathy. Best advice ever. MO agreed. Thank you!
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Sloan, sounds like you have a MO who listens to you, good luck. Seems you were pretty early stage
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interesting My oncologist just cancelled my last taxol infusion because I complained of the neuropathy in my hands starting down the median nerve left hand and index finger and thumb right hand my feet are just a bag of old socks I feel like I have socks crumpled up under my feet
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Very happy to read that some of your docs are not pushy about you completing every last round of chemo; that they are listening to you and making individual decisions for treatment. The blanket approach just does not fit everyone.
The message here (and that we must spread elsewhere) is that patients should always have that open communication with the docs about any and all SEs because getting a treatment tailored to oneself depends on that.
No CIPN improvements to report at this time, but I keep hopin'.
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hi Elimar so nice that you read my posting. My daughter had me take a l-glutamine, vit b-6, folic acid regimen which I further supplement with a super b complex too
From what I read from others my peripheral neuropathy is not that bad
When I asked my oncologist about my daughters recommendation ps she is a physician, he said the evidence did not Support the glutamine and b supplements
At this point I keep feeling answers like that make
me feel like answering back well they are my hands and feet obviously not yours but I still try to keep open communication with him. So when the tingles and numbness got worse I did complain and he did cut the dosage of the taxol for my last two weeks. Now he cancelled my last taxol so he must be aware. He gave me an article about the peripheral neuropathy at the start of the taxol so I was warned.
,
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MinusTwo,"lucky you only have cancer" you said, your sense of humor is intact, but you do have some of the SE from treatment, yes? Cancer is nasty in itself.
I wonder if the swelling was just such a change in your regular routine, like being on your feet for 16 hrs a day, big change there, I agree walking is good for us, but maybe you just overdid? Hope it is resolving itself, I have loads of other health issues, my heart doctor checks my ankles first thing when I go in for my 6 mo, check, I have a coronary stent, high blood pressure, but being treated with meds, high cholesterol, untreated, my choice, thyroid (low) taking meds for that too, so see enough docs regularly. Always trying to get them to make it an annual visit, so far only the Oncologist has changed me to once a year.
On the neuropathy front for me, it seems to only be numbness now, no pain (Yeah) unless my feet gets too warm. I have discovered going barefoot on tile floor is heavenly, its always cool, almost like I feel my feet are there, but not quite, but a good feeling nevertheless.
dsgirl
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Sloan & Country - good for you! I hope skipping that last one makes a difference for you.
Country - Love what you say about your feet feeling like balled up socks. As recently as yesterday I took off my right shoe, thinking my sock had bunched up under the ball of my foot. Surprise, surprise the sock was just fine, just my stupid foot.
Country - my RO suggested B6 right away when my neuropathy presented.
DSgirl - I would LOVE to go bare foot. That will never happen again for me. It actually hurts to walk bare footed, even in my house. Torture.
GPDebbie
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Did anyone get neuropathy from radiation?
I have neruopathy from the chemo, and I'm worried that radiation will make it worse. I am not having my lymph nodes irradiated and will be in the prone position if that helps. I will have 26 rads and 7 boosts. If you know anything about this, please comment. Thank you!!!
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well the prescription cream with the neurontin in it doesn't help me all though the doctor says it's helped others with neuropathy Mostly because the pain shoots through my foot like an electric shock, but is inconsistent. Just making my foot more numb isn't the answer. When it hits I try not to cry out. It's tough in a restaurant :
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Hi everybody,
I am a lurker on this thread and contribute from time to time... but I had to respond to whoever mentioned the leg swelling. I am almost three years past chemo, but because I am Stage IV, am supposed to be getting Herceptin every three weeks. I have taken occasional "vacations" from Herceptin because of the side effects, and have completely eliminated Perjeta because I am convinced it made my neuropathy worse. (my every six months scans so far have been clear... ) Anyway, I also have permanent neuropathy, although it has gotten better over the last two years. My hands are almost completely normal...I spent a long time dropping things, not being able to tie my shoes, etc. I still have a hard time with writing (isnt' as pretty as it used to be) but that's about it. My feet are a different story. Like some of you - no pain, just total numbness. I don't know which is worse. From time to time I will get shooting pains through my feet and then I'll be all excited just because I have SOME feeling. Usually.. nothing. Like the feeling when you take off a really tight ski boot and you wait for the blood to start flowing again and then it never does. My left foot is much worse than my right... my right has improved about 75% over the last two years. My left only about 25%. Sometimes the numbness goes all the way up my calves (someone else mentioned that)... which is why I stopped the Perjeta. I am positive that helped. I also take Vitamin B everything and get period foot reflexology massages, which I swear is the BEST thing ever.. my feet feel almost normal after them.
However, I am really writing because I also get feet and leg swelling, and I never associated it with neuropathy. I just thought that my lympth system was all off after chemo. If I wear any kind of heels ( I never wear the kind I used to) or boots all day long... I come home and my feet and legs are puffed up. I have indentations in my legs from my boots.. they are that puffy. Some days are worse than others... I can never figure out what it is. Sometimes I think it's the days I don't drink enough water or I have too much salt. I absolutely think STRESS MAKES IT WORSE as someone else said... without a doubt. (the numbness, not necessarily the swelling. I am skipping around here) Anyway, I never made the connection. I have an appointment with my oncologist on Thursday and I am definitely going to ask about that. I should mention that I am 48 years old.... I have been on several trips since finishing chemo ( I figure I better go while I can) ... Italy with my husband, Italy with our four kids... Hawaii... etc. I am also active and continue to run and hike despite my feet.. sometimes they are worse afterwards and sometimes they are better..I never know.
I sympathize with all of you... nobody knows what I am talking about when I complain about how crazy my feet are driving me... so I am selfishly grateful to be able to read your stories and know that there are other people out there that DO understand.
Thanks for listening!
XO
Andrea
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I saw my oncologist yesterday. I was due for my fourth Abraxane chemo. Chemo three really hit me with worse neuropathy of hands and feet. She said I should skip chemo 4 and have a PET scan. Her original plan was to have four chemos and then PET. She did not seem too assuring that the neur. would improve. I am glad to hear you had improvement after two years. I have been having acupuncture which she believes in, but she was uncertain if it really would help neur. She said some of her patients have success with cannabis oil (drop in the mouth) so I plan to try which should be easy to buy in Colorado. I do wonder about reflexology. I have a person recommended to me but fear that pressure on my foot nerves could damage the nerves more? She also does not believe any B vitamin helps. Nice we have each other to learn from.
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Sueco -I had reflexology one time about 18 months ago, and decided it was not for me. It was very painful afterwards, it hurt to walk for 2 days. I wasn't up for round 2. Sounded good in theory but I won't do it again.
Acupuncture helped, but at $100 a session not covered by insurance here in Ohio, that was a luxury I could not afford long-term.
My chiropractor does magic things to my left foot (I have plantar fasciitis in that foot, too), I am going next week for an adjustment so I am looking forward to my foot feeling normal for a couple days. Again, out of pocket because insurance companies just want to give you drugs, so eastern medicine is just BS and nothing is covered. As my oncologist said very jokingly to me, what could possibly be good about 3,000 year old techniques? LOL! (She was joking of course. She is all on board with complementary treatments.)
I buy a product from doTerra (essential oils). It is called Deep Blue Rub. I love this product. When I start getting that sharp stabbing pain under my toes/ball of my foot, I massage a little of that cream into the ball of my foot and between my toes, and I get instant relief. It retails for $35 a tube but lasts forever, you just use a little dab. It is cooling and warming at the same time, sort of like Ben-Gay.
Take care, all!
GPDebbie
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Oh BusomBlues, I am sorry about your hair. It took about 3 years to get mine back to where it was, but I have about half the hair I did pre-chemo. (On my head and everywhere else, for that matter.) My hair was/is stick straight. When it grew back in I figured out where they came up with the term "chemo curls". It was very curly, and grayer. I wore it short for a while and just kept getting the curls cut out of it. Once it started coming in straight I worked it back into my bob. I still color it. Not quite ready to go gray yet.
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I went to the chiropractor this morning, they worked on my foot. Going again Friday. Wonderful!0 -
I still have burning on my hands at night sometimes, but the neuropathy is better (8 weeks PFC). I've been taking a 50mg B complex vitamin everyday. The days I don't take it I notice the tingling more.
My biggest struggle is that I don't know where the neuropathy ends and the lymphedema begins, and you know how you feel everything when you think about it!
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BosumBlues, is it getting cooler where you are? I always have more trouble when the weather gets cold and my feet get cold
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Iwas in Fla for a few days and my foot felt great. Back in PA again and got the zings and zoingsback
. Maybe the weather does make a difference0 -
The evidence of improvement is barely perceptible now, but the colder weather does not seem to be so hurtful on my feet (at least not yet) as it was last year. I'll take it!
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