Vent about Permanent Neuropathy

proudtospin

I got exempted from jury duty when doing rads,

Blownaway

Proudtospin - Tell me how to get exempted from Jury duty. Mine is coming up 19th October and I know I can't handle getting to the bus station, going downtown on a bus, finding my way to the jury building.....and sitting all day with my feet on fire nerve pain down spine, arms and legs and joints aching from Tamoxifen. I have already asked for an extension thinking I would feel better further down the line but not so. I have always done the civic duty thing but this year it's too much for them to ask of me.......

proudtospin

Blownaway, you can not lie and in my county I went to court on the day required. The judge asked if anyone had a reason not to be able to serve, I went up to his desk and told him I was in the midst of radiation. I was excused and sent home

good luck, I have served several times previously and in dif states so your state may be dif, than mine

Chloesmom

Had 4 rounds of TC. Didn't get any SEs until a week or two after the final one. Toes get stuck curled up and I have to pull on them to straighten It's the electric jolts that are the biggest issue

QuinnCat

Welcome kaz27 - what a gracious post you have made. I just recently dropped by and will probably be absent soon, but I will never forget your post! Did you name yourself after "page 27?" I have to know!

Elimar....just saw your question about "the study" I mentioned. I assume the one I mentioned about 55% Ki67 having the best response to chemo? Sadly, I do not have it in my links (I might be 2 computer iterations later and my bookmarks don't seem to be very comprehensive), but I remember that one distinctly since at onco 39, grade 3, ki67 60%, I was looking for any good news I could find!

kaz27

Hi QuinnCat, The number 27 pops up a lot in my life, and something nice or exciting seems to happen right after it does...like being the first page number I first see on a website forum and then finding out it's chock full of nice people with tons of info and great advice!

Everyone,

I have an observation and wonder if anyone else has experienced this. I have to wear tight bandages on my legs about 4 days a week for lymphedema. When they are on, I still feel the neuropathy in my feet, but it seems subdued. When the bandages are off, the neuropathy pain is much worse and the lightning strikes are much more frequent. I wonder if applying pressure isn't some form of relief we can take advantage of? If anyone else out there wears compression stockings or gloves, I'd be interested in knowing if your pain is reduced when you do.

kaz27

I also have a question for those of you taking B6 and B12....how much and how often do you take it, please?

tessu

Hi. Can I please whine here, because I am so scared....

I'm 59, right mastectomy and 9 axillary nodes dug out Aug 20 2015 and started chemo every three weeks Sept 10. I've had two doses of Taxotere so far, scheduled for my third 22.10., after which I get switched to cytoxan-epirubicin-5-fluorouracil for three doses. I already have old chronic pain and variable numbness in my left arm/hand from nerve root compression in my neck. Before BC, thanks to my Pain Clinic doc, pain was mostly under bearable control, and numbness not much of a bother, because I am extremely right-handed and just ignored my left hand.

About 2 weeks after my first Taxotere dose all fingertips became red, very sore, slightly swollen, like they had been "boiled", and I started losing touch sensation. I started vitamins B6 and 12 two weeks ago (after reading in these forums it may help neuropathy). This time fingertip pain and numbeness started worsening after only a few days, and yesterday my toes started tingling. I have also developed worsening lymfedema in my right arm a couple weeks ago, OTC sleeve is too tight and glove is too loose.

I am scared to death of losing the ability to take care of myself. I have adequate meds for the pains, but the added numbness and the edema make everything very dificult.

Is the numbness permanent?

My oncologist said the "brain fog" I'm struggling with is an expected side effect of Taxotere, and "should improve over a few months after the last dose". But she wouldn't answer when I asked about the finger numbness, whether that will go away. Pain has been a constant companion since 2005, have pretty much learned to live with that, but this added numbness is difficult and scary.

In attempts to find meds for my chronic nerve damage pains, I have been through Lyrica, Cymbalta, and a slew of other drugs that either provoke constant headaches, or hives, or intolerable dizziness in addition to simply not working for pain.

I would welcome any practical advice or any comments from you brave women.

Thank you for listening

dtad

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....

dtad

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!

Sloan15

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.

tessu

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.

elimar86861

Nevermind.

Chloesmom

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

MinusTwo

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.

Notbuyingit

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??

proudtospin

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

dsgirl

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

GirlPowerDebbie

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

MinusTwo

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.

Sloan15

Thanks for all your help. I decided not to get my last TC due to neuropathy. Best advice ever. MO agreed. Thank you!

proudtospin

Sloan, sounds like you have a MO who listens to you, good luck. Seems you were pretty early stage

countryfrenchrose

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

elimar86861

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'.

countryfrenchrose

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

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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.

,

dsgirl

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

GirlPowerDebbie

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

Sloan15

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!!!

Chloesmom

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 :

Andi67

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