Almost done with chemo!! Neuropathy Question

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hollyholly
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Almost done with chemo!! Neuropathy Question

Postby hollyholly » Thu Dec 22, 2011 1:19 pm

Hi all!
I have been a member of this board since shortly after my diagnosis in June at the age of 24, although I have been mostly silent! Between dealing with treatments, trying to keep my photography business running smoothly, and planning my wedding - it has been a busy year! I am looking forward to my 12th and very last chemo day, December 27th. I've been on Folfox for six months and I am SO ready to be done! My last few treatments have been relatively easy, compared to my mid-way point treatments. It seems like it was just the worst right in the middle. I was planned for "in like a lamb, out like a lion" but it seems as though the lion has come and gone (fingers crossed!!) I'm mostly just glad to be done with Neulasta. It made me feel as though I had been hit by a truck on an otherwise "ok" chemo week. Blah!

My question is about an odd side effect that just popped up after my 11th treatment. The numbness in my hands/feet has finally set in, although I've been dealing with the cold sensitivity since day one. I know the neuropathy is normal, and I'm grateful that it's only appearing at the end. That gives me hope that it won't be permanent. I've noticed that when I look down, chin to chest, my feet go totally numb. It's like a little shock to my feet every time I bob my head down. The tingles only last for a few seconds, but it's directly related to a head/neck movement. Of course this freaked me out since I thought it might have something to do with my spinal cord being out of whack. My doctor totally dismissed it, though. He thought it was odd but had no cause for concern. Also, when I hold my hands out away from my body, they start to tingle more. Are these things normal??

On another note, I just finished Anticancer: A New Way of Life by David Servan-Schreiber. LOVED it! He was a two time cancer survivor, and an MD, so his perspective was really unique. It's all about what we can do with diet, exercise, and stress control to reduce the risk of getting cancer or having a recurrence. Really solid, scientifically - but his own personal story is quite touching as well. I cried, I learned, I was inspired....highly recommended!
Holly
Age 25
6/1/11 Dx Colon Cancer (Stage III B)
6/2/11 Surgery to remove tumor, 5/22 lymph nodes
6/13/11 Engaged!
7/14/11 IVF Egg retrieval, 20 embryos saved
7/20/11 Begin FOLFOX
11/15/11 9 down, 3 to go!
6/23/12 Getting married to my favorite person!

Swimmer22
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Joined: Mon Oct 24, 2011 7:25 am

Re: Almost done with chemo!! Neuropathy Question

Postby Swimmer22 » Thu Dec 22, 2011 1:59 pm

I too experienced the exact numbness sensation. I noticed it first off when I would sneeze, then I soon realized that anytime I quickly forced my head in a downward motion to my neck I would get that electric shock feeling funning to my feet. I am happy to tell you that being off Flofox for 6 months- that symptom has disappeared. Good luck to you!
12/10 - Rectal Cancer Stage IV
1/11 - Lung Met- VATS
3/11 - Folflox begin 6 tx.
7/11- 28 tx. chemoradiation
9/11 - LAR Surgery (Complete response to Chemo)
10/11- 12tx. of Folfiri Mop-up
7/12 - Ostomy reversed
NED since 9/1/11
3/13 -Port Removed

E0367
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Re: Almost done with chemo!! Neuropathy Question

Postby E0367 » Thu Dec 22, 2011 2:04 pm

Holly,
Thanx for the book recommendation!
I just wanted to reassure you that your neuropathy symptoms are slightly atypical but still probably a side-effect of the oxaliplatin. The timing makes sense and your neuropathy sx's may get little worse for several month even after you are done, and then improve with time. You are ahead of the game compared to my regimen, so I am not speaking from experience, but hopefully there are others from the Forum that may have had similar experience. (Oh, I'm glad to see that Swimmer22 already replied while I typed slowly!) Congratulations and best of luck to you as you are on the home-stretch!
Ellie
Rectal CA @ 44, 7/11; Clinical: T3, N1, MX (IIIB)
Xeloda & XRT, 8/11; LAR & ileo, 11/11
Surgical: ypT3, ypN0, ypMX (0/5 LN); Folfox 12/11 - 4/12
CT 5/12: lung/abd masses, s/p VATS & abd mass Bx - neg for cancer; Ileo reversal, 6/12
NED

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Jimswife
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Re: Almost done with chemo!! Neuropathy Question

Postby Jimswife » Thu Dec 22, 2011 2:07 pm

I've got that book , it's excellent isn't it , congrats on nearly finishing , we are 1/4 of the way through now , 2 nodes positive , have you had the all clear yet ? My husband gets a scan mid chemo in feb although they said all visible cancer was removed at surgery and chemo is adjuvant like yours !!!
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

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Jimswife
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Re: Almost done with chemo!! Neuropathy Question

Postby Jimswife » Thu Dec 22, 2011 2:26 pm

Forgot to mention I'm doing ivf too next year, did it last year too so I'm here to answer any Ivf questions you may have .
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

Toby57
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Joined: Thu Sep 29, 2011 1:30 pm
Location: Texas

Re: Almost done with chemo!! Neuropathy Question

Postby Toby57 » Thu Dec 22, 2011 2:33 pm

Congratulations Holly for your upcoming wedding, wishing you a very happy and healthy future. My diagnosis is about eight months prior to yours,and I did have similar experiences. Nueprigin and Nuelasta gave me bone aches, just felt bad. The neuropathy started at my tenth round,so my oncologist dialed my chemo down a little. The head bending sensation was similar to yours, and in my case, all side effects went a way a few weeks after chemo except the neuropathy. The numbness in my fingures are not much, but the sensation of walking on gravel in my feet intensified weeks and months after chemo. The Oncologist did say that it will fade away with time but could be permanent in some cases. It is not a big deal, it just reminds you of that you have the disease. Wishing you the best of luck. Happy holidays.
54/ Father of 4 . Married to a loving wife
Dx cc Oct.2010/ colon resection,40cm of colon removed.
Stage 3B , 4/37 nodes.
T3N2A, kras Wild
Completed 12x Folfox , June 2011.
Clear Scans June & Dec, 2011, CEA normal.
Live , give , and forgive.

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John72
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Location: Los Angeles

Re: Almost done with chemo!! Neuropathy Question

Postby John72 » Thu Dec 22, 2011 2:39 pm

FYIfor most people the nueropathy diminishes. I finished chemo in March and by somewhere around September or maybe August, I no longer noticed the tingling.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

hollyholly
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Re: Almost done with chemo!! Neuropathy Question

Postby hollyholly » Thu Dec 22, 2011 2:45 pm

Swimmer, I am glad to hear I'm not the only one! Thank you for that, I can chill out about my spinal cord now! :) Congrats on your NED status - that's just wonderful!

Ellie and Victoria, I wish that you have nothing but easy chemo weeks ahead of you. Easy is a relative term, of course! I know it seems like time is not flying when you are in it, but before you'll know it you'll be looking back, in amazement, and realizing that you accomplished something pretty incredible that you never thought you'd make it through. I remember right after my eighth treatment, which left me in bed for a week, thinking "four more...I can't do it!" Four seemed like such a tough task. Now, "one more" seems like a piece of cake. I wish it were today so that I could get it over with. Victoria, I may send you a PM about the IVF - thank you!!

Toby & John - so glad to hear that the effects may fade. Even if it is permanent, I can deal with that. It's crazy how fast you can adjust to a new "normal." If I'm out of bed on a chemo week I'm just so happy to feel "okay" that I'm smiling from ear to ear!! I sure do appreciate my health more than I ever used to.

I haven't had the all clear quite yet. I have bloodwork/PET scans in February, and then a colonoscopy in June (one year from Dx). I'm very anxious, although I am pretty confident that I'll get the all-clear! (I can thank my overly optimistic mother for that!) One thing I can't imagine, is having to go through it all again. So I just don't go there. I'm amazed at the strength of those who have beat this disease two, even three times. I guess one doesn't know how much strength one has until it's time to use it!

Happy holidays to you all !!! xoxo

P.S. I just noticed in my original post that I stated I am 24. That's totally false. I was 25 when I was diagnosed and I'm almost 26 now. Haha! I'll blame that one on chemo brain. Duh!
Holly
Age 25
6/1/11 Dx Colon Cancer (Stage III B)
6/2/11 Surgery to remove tumor, 5/22 lymph nodes
6/13/11 Engaged!
7/14/11 IVF Egg retrieval, 20 embryos saved
7/20/11 Begin FOLFOX
11/15/11 9 down, 3 to go!
6/23/12 Getting married to my favorite person!

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Jimswife
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Re: Almost done with chemo!! Neuropathy Question

Postby Jimswife » Thu Dec 22, 2011 2:51 pm

Feel free to pm re Ivf , it's my husband who had cancer/chemo ,stage 3 like you with 2 nodes, we banked sperm just before chemo although onc says chemo shouldn't affect fertility long term ? Only while Hes on chemo ? Did they tell you you would be infertile ?
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

hollyholly
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Facebook Username: nicholsonholly
Location: Michigan
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Re: Almost done with chemo!! Neuropathy Question

Postby hollyholly » Thu Dec 22, 2011 3:18 pm

Thanks, I sent you a message but I think I clicked e-mail instead of PM. If you don't get it let me know and I'll try again. Thank you!!
Holly
Age 25
6/1/11 Dx Colon Cancer (Stage III B)
6/2/11 Surgery to remove tumor, 5/22 lymph nodes
6/13/11 Engaged!
7/14/11 IVF Egg retrieval, 20 embryos saved
7/20/11 Begin FOLFOX
11/15/11 9 down, 3 to go!
6/23/12 Getting married to my favorite person!

Surroundedbylove
Posts: 3126
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Location: Seattle

Re: Almost done with chemo!! Neuropathy Question

Postby Surroundedbylove » Thu Dec 22, 2011 3:52 pm

My onc withheld just the oxi during my last Xeloda cycle because by then I was experiencing some neuropathy. The neuropathy can get worse after chemo ends (usually a mont to two later) and then you wait and see if you are within the group of people who have permanent or temporary neuropathy - and the degree to which it subsides. I'd explore with your onc whether oxi will be withheld at your last treatment or not.

SBL
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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Jimswife
Posts: 907
Joined: Fri Nov 18, 2011 9:53 am

Re: Almost done with chemo!! Neuropathy Question

Postby Jimswife » Thu Dec 22, 2011 3:55 pm

Got it will pm you back now x
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

SkiFletch
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Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: Almost done with chemo!! Neuropathy Question

Postby SkiFletch » Thu Dec 22, 2011 6:23 pm

Definitely sounds like Neuropathy Holly. Don't fall into the trap of not giving the neuropathy enough credit. Talk with your onc about it especially before your final infusion. Yes, since you're only now getting it, you will be more likely to not have long-term issues with it, but you're 24 and you need your hands to function to work pressing all the buttons on those cameras of yours. Do you want to live the rest of your life with permanent neuropathy that didn't develop until after chemo is done? I personally stopped receiving Oxali with my 10th treatment because my neuropathy came on fast then. My oncologist did not think it was worth the long-term risk to get just a couple more treatments. And I'm glad we did hold it. Even so, the neuropathy got significantly worse for 2 months post-chemo (3 months post-oxali). Today I have no problems with permanent neuropathy, but I wonder what would have happened if I tried to push through those last couple treatments with it. I'm glad I don't have to worry about it :)
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

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Gloria
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Re: Almost done with chemo!! Neuropathy Question

Postby Gloria » Mon Dec 26, 2011 2:50 am

Hi Holly, my neuropathy didn't come on until later in my treatment too. I finished mid January and still have a little tingling in 2 fingers on each hand and just slightly in the end of my toes. I was about 20 minutes into my 11th round and had a severe allergic reaction to the infusion, didn't have to have round 12 :) I too noticed that when I would extended my arms out that my fingers would tingle more, the same with my feet. About 2 months after I finished that when I was walking my feet felt like I was walking on needles, I pushed through it and the longer and more often I walked the better it got. :) Good luck, congrats on the wedding. Oh I'm not a professional photographer but I do a lot of photography and I've had no issues :)
56
DX 6/10/10
Resection 6/17/10
Stage IIA (pt3N0MX)
8/8 benign lymph nodes
Blockage/tumor 2.5 x2 x .3 cm
Start Folfox 8/9/10
Finished 1/17/11
NED :)

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Canadianmom
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Joined: Wed Nov 03, 2010 6:29 pm

Re: Almost done with chemo!! Neuropathy Question

Postby Canadianmom » Mon Dec 26, 2011 4:07 am

Hi Holly. Just wanted to warn you that the neuropathy gets worse for about six weeks after your last tx. That sensation you describe is called Lhermitte's sign. I wanted to get the full effect if chemo and kept asking my onc to give me the oxi. I thought that neuropathy was just numbness and tingling. I could handle the pain but I wasn't prepared for the loss of function. I couldn't write, do up buttons, fish keys out if my purse, use cutlery, put on earrings or make up. Seven months later, I am just regaining function. Maybe you could hold the oxi for round 12????
30/09/10 Dx mCRC/ 39 yrs old
08/11/10 liver met; Stage IV
23/11/10 PET 2 lit LNs
25/11/10 RFA to liver met
13/12/10 Folfox 6 plus Avastin.
15/03/11 After 7 rounds. NED. No further tx. 2014 still NED
Praying for patience and strength.


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