Late Onset Neuropathy & L'Hermitte's Sign

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bonnemarie
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Late Onset Neuropathy & L'Hermitte's Sign

Postby bonnemarie » Thu Oct 05, 2017 7:41 pm

Hello friends,
Hoping you can give me some perspective on something I'm going through.

I just finished 12 rounds of chemo (Stage 2B pT4 NOMO) three weeks ago. Stopped the Oxaliplatin after 8 rounds due to bad liver #'s; 5-FU only Rnds 9-12.

I experienced neuropathy in my feet and especially my lower legs (socks) during treatments, which would diminish the farther I was in the bi-weekly schedule.

However, during the first week of my last round, I started feeling shocks in that area when I'd lower my head (L'Hermitte's). I also had really increased loss of sensation/cold numbness in my toes, balls of feet and fingertips, starting the day after my last disconnect. I waited a week to see if it would fade, like before, but because it was so much stronger and did not go down, I went in to see my oncologist.

He told me he doubted it was from the Oxaliplatin, since it had been about 8 weeks since I stopped getting it in the infusions.

What else could this be from? Chemo is the only thing medically that's been happening in my life for the last 7 months. I've gone through the forum posts about neuropathy and understand it could fade or it could be permanent.

I am sacred and angry about this - having a hard time walking - loss of balance and knowing where my feet are. Have burned my right hand twice and cut both twice (minor). Also, am very, very tired because my feet and lower outside legs tingle and hurt when I lay down to sleep and it keeps me awake. Am so afraid I'm going to injure myself and not know it.

Tomorrow, I go in for a "survivorship" appointment with a nurse PA. What questions should I be asking about this - I feel like the doctor was dismissive of me and for the first time I'm feeling really broken by all of this. Somehow, I kept my chin up til my feet went numb.

Thanks so much to everyone who posts here - you all helped me tremendously through my whole treatment.
Last edited by bonnemarie on Fri Oct 06, 2017 11:31 am, edited 1 time in total.

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Shana
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Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby Shana » Thu Oct 05, 2017 10:43 pm

I'm sorry but I don't have any information to offer you. I hope someone else can give you some input.
Don't let the doctor dismiss your symptoms and concerns they are affecting your quality of life.

Best of luck and good wishes that this resolves soon and you get some relief!

Shana
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
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MissMolly
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Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby MissMolly » Thu Oct 05, 2017 11:06 pm

You might want to send a PM to dianetavegia. Diane had a similar experience with L’Hermitte’s Sign.

Diane wrote about L’Hermitte’s sign in several posts to bring awareness of its symptoms and debilitating effects. She wanted to bring light to the condition for those with similar symptoms. You can also search older posts through the search function by typing in key words of interest (L’Hermittee) or by dianetavegia as the author.

I believe Diane would disagree with your oncologist about the role of chemotherapy in contributing to L’Hermittes. Chemotherapy does play a role.

My own experience with medical care: Sometimes it is easier for physicians to deflect blame back on patients for effects/symptoms that they do not fully understand or that they do not want to acknowledge responsibility for.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

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susie0915
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Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby susie0915 » Fri Oct 06, 2017 5:59 am

I really didn't have problems with neuropathy until about a month after I finished treatment. I would have a little a day or two after an infusion then be fine. I'm about 18 months out of treatment and still have tingle and numbness in my feet. I have gotten better. Don't drop things or lose my balance like I did. It is very annoying but seems I can continue to do everything as long as I wear shoes or slippers at all times. I find it is better if I keep moving. First thing in the morning is when I feel it most. There are some vitamins suggested for neuropathy. Good Luck.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

bonnemarie
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Joined: Fri Feb 24, 2017 4:38 pm

Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby bonnemarie » Fri Oct 06, 2017 12:12 pm

Thanks so much!

(Note: I'm the original poster but a newbie and edited a number in the original post so it's being evalutated - it disappeared - hoping it will pop back in. Long story short: I have CIPN and l'Hermitte's Sign. It developed during my last treatment and is really scaring me.)

I've been really digging through the forum posts on L'Hermitte's (and off-line too) - have read many by dianetegia (thank you!) and others.

When I was given the list of possible side effects from FOLFOX, this was not on it. That and the actual post-chemo flare up in intensity of the neuropathy wasn't either and it was something I was not prepared for. I guess I thought that how I was feeling earlier on, with the fade-out of cold touch, throat, leg/foot sensitivities, etc. from the Oxalilplatin during the other bi-weeklies was going to happen with this. When it didn't, and I reached out to my onc, he seemed as surprised as I was.

Now that I'm reading all of our members experiences, it seems like this late onset is pretty common and many others have this LS too.

Knowing about this beforehand might've changed my path - it seems like the ball's been dropped on these issues.

That said, and being in the position of not being able to see a fix in the near future, I'm trying to go about life as usual as much as possible. Wearing thick wool socks with birkenstocks or fleecy slippers seems to help surface contact problems and I'm trying to be more conscious to where I'm putting my feet so I don't keel over. I tend to list left right now.

Will check in after I have my survivor's appt today.
2/3/2017 - DX - tumor in cecum
2/17/2017 - Right Hemicolectomy
Stage 2B pT4a N0M0
3/17/2017 - Folfox starts / infusions & 48hr pump
5/12 & 7/16 - treatment postponed for bad liver #'s
Suspend Oxalilplatin / 5-FU only to end
08/16/2017 - CT / NED
09/21/2017 - 12th and last infusions
64 yo

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dianetavegia
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Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby dianetavegia » Fri Oct 06, 2017 2:57 pm

Hi and yes, I still have L'Hermitte's sign/ syndrome. I also have tactile allodynia which is pain from a gentle touch like sheets rubbing across my legs. I completed chemo 7 years, 2 months ago.

I didn't mention my symptoms to my onc until 2 weeks after chemo ended. He told me I could never have oxy again or 'I'd be putting you in a wheel chair for life'.

I easily found articles online re chemo as a cause for L'Hermitte's Sign. Actually, I told my onc I had L'Hermitte's Syndrome and told him it felt like a sonic boom in my feet when I lower my head / bend my neck. It's damage to the central nervous system.
Although often considered a classic finding in multiple sclerosis, it can be caused by a number of conditions, including transverse myelitis, Behçet's disease,[2] trauma, radiation myelopathy,[3] vitamin B12 deficiency (subacute combined degeneration), and compression of the spinal cord in the neck from any cause such as cervical spondylosis, disc herniation, tumor, and Arnold-Chiari malformation. Lhermitte's sign may also appear during or following high-dose chemotherapy


I never go barefoot because of false sensations in my feet. If I stand in a line at the store for a while, I start to sway so I hold on to the cart or spread my feet apart. My feet feel like I'm walking in wet sand. My fingertips still tingle, tho my fingerprints came back (Folfox has many side effects). My sinuses are permanently scarred from Folfox.

This is my new normal. It seldom crosses my mind. Doctor offered Lyrica but I refused. The side effects are horrible.
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Eight yrs, 11 months since original dx. Five yrs. 7 months post liver resection. NED November 2017!
“O Lord my God, I cried out to You, And You healed me.”
Psalms 30:2

bonnemarie
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Joined: Fri Feb 24, 2017 4:38 pm

Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby bonnemarie » Sat Oct 07, 2017 12:28 pm

Hi & thanks Diane. It is really encouraging to me to see your commitment to an active and full life.

I've been advised by my onc to see a neurologist. He wants to rule out any other thing that could be causing this. I was told I did not "present" symptoms as others with CIPN in his practice - that I was the first L'Hermitte's Sign patient.

So, I'm going to go through with that. There doesn't appear to be much choice - most of the other things that cause this seem to be untreatable/curable as well, but a clear diagnosis would perhaps give me focus.

Maybe time will be on my side. Friends and family keep asking me when I'm going to celebrate being done with chemo. Heh.
2/3/2017 - DX - tumor in cecum
2/17/2017 - Right Hemicolectomy
Stage 2B pT4a N0M0
3/17/2017 - Folfox starts / infusions & 48hr pump
5/12 & 7/16 - treatment postponed for bad liver #'s
Suspend Oxalilplatin / 5-FU only to end
08/16/2017 - CT / NED
09/21/2017 - 12th and last infusions
64 yo

Achilles Torn
Posts: 88
Joined: Fri Dec 16, 2016 2:41 pm

Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby Achilles Torn » Sun Oct 08, 2017 12:47 am

Hey Bonnemarie,

Thought I would add my own story as it is a bit more positive. I developed the old L Sign about a month and a half after my last Oxi. First noticed it driving and felt like something was shocking my feet. Then I realized it happened when I moved my head. I also have numbness in my feet and fingers.

Now the LS has improved after 2 months. Still have numbness in fingers and feet which may have improved slightly but it’s really hard to tell. My Onc said that these things can resolve over time.

Hope that helps
AT
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

bonnemarie
Posts: 4
Joined: Fri Feb 24, 2017 4:38 pm

Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby bonnemarie » Mon Oct 09, 2017 8:14 pm

Thanks so much, Achilles Torn - I needed a dose of positivity today! :)

It's good to know that there IS a chance of this receding and healing - that old hope for the best (but prepare for the worst) is in play.

What I need, and don't have a lot of, is patience. Gonna work on that...
2/3/2017 - DX - tumor in cecum
2/17/2017 - Right Hemicolectomy
Stage 2B pT4a N0M0
3/17/2017 - Folfox starts / infusions & 48hr pump
5/12 & 7/16 - treatment postponed for bad liver #'s
Suspend Oxalilplatin / 5-FU only to end
08/16/2017 - CT / NED
09/21/2017 - 12th and last infusions
64 yo

218Base
Posts: 3
Joined: Tue Oct 10, 2017 1:35 pm

Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby 218Base » Tue Oct 10, 2017 1:46 pm

After my 1st round of chemo I, almost immediately, developed a severe case of peripheral neuropathy in my feet and lower legs. I told my oncologist about it and he removed whatever drug is known to cause it from the chemo cocktail mix. I'm three years out of surgery now and cancer free (yay!!) but still have the neuropathy. I've found that 75mg of Lyrica twice a day helps considerably; especially with helping quiet the pain enough to get a good nights sleep. The downside is that Lyrica is expensive. There are generics available but I haven't tried any of them. A dollar a day is money well spent for the relief it brings.

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susie0915
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Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby susie0915 » Tue Oct 10, 2017 3:09 pm

My oncologist prescribed neurontin. I have been holding on to it for a year. I really don't want to take it. Does the Lyrica make you feel foggy? That's what I'm worried about. It also didn't really set in until I finished with chemo treatments. My neuropathy is more annoying than painful. It doesn't prevent me from doing anything, but find I need to wear shoes or slippers all the time. Weird feeling on hard surfaces. I did used to drop things more and lose my balance more often than now, so it has improved some. I'm hoping it will go away but it has been 18 months since I finished treatment, so not counting on it. I can still run and do everything, like I said it is just annoying.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

218Base
Posts: 3
Joined: Tue Oct 10, 2017 1:35 pm

Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby 218Base » Wed Oct 11, 2017 1:23 pm

Lyrica probably affects everyone a little differently but, for me, it doesn't make me feel foggy or anything. The only noticeable side effect is acne. A Google search shows that others experience acne as well, some pretty severe, but for me not really all that bad. Like you, I can still do everything as the neuropathy is more of an annoyance than a pain-except at night when it is more noticeable to the point where it often wakes me up then makes it hard to get back to sleep. I hadn't had a good nights sleep in over three years. Lyrica changed that.

Tdubz
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Joined: Sun May 07, 2017 11:01 am

Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby Tdubz » Fri Oct 20, 2017 12:52 pm

Glad I saw this post. I had my last round of chemo almost a month ago and they neuropathy doesn’t seem to be getting any better. It might even be worse. I too experience a sensation in my legs when I bend my head forward. Now I know what it’s called. I also get the same sensation in my arms if I extend my arms or reach for anything. Finger tips are still numb and I feel like my fingers don’t work as good as they used to. It’s hard to button up shirts, write, play video games, etc. at least I can still type lol. My feet still tingle all the time too. I go for daily walks and at first it was very uncomfortable but now it’s just annoying. The tingle does seem to get much worse after my walk though. My onc let me know this could happen and that the neuropathy usually gets worse before it gets better. I just hope it starts getting better soon lol.

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waw4
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Re: Late Onset Neuropathy & L'Hermitte's Sign

Postby waw4 » Mon Oct 30, 2017 8:11 am

just google "oxaliplatin-induced neuropathy" to find many links to related research articles ...
Bill, 67 yr. old male, m. w/2 grown daughters
Colonoscopy 6/29/10; Dx Stage I or II
Colon Resection 7/15/10; Dx Stage III
CT/PET clear 9/7/10
FOLFOX4 start 9/14/10; end 1/20/11 (9 tx)
CT clear 8/9/15 Blood labs clear 8/9/15


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