Hellooo Neuropathyiiiiiiiiiii

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[Ana & Alex]
Posts: 74
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Hellooo Neuropathyiiiiiiiiiii

Postby [Ana & Alex] » Wed Jun 07, 2017 10:47 am

Soooo...
I was sitting on my chemo chair for the first time this afternoon and i was feeling pretty damn great. Drunk 2 1/2 liters of water and moved around...

When there were only 10 ml left from my Oxi it has begun: neuropathy! Didn't feel my mouth, my hands and feet startet to feel funny.. stings in my throat and in my eyes... and now I'm having spams in my hands. Doesn't hurt.. it only feels funny..

Anyone BTDT on the frigging FIRST DAY?

Anyways, I'm still happy that I didn't had an allergic reaction and was able to get the first eternal-youth-juice inside of me :)

Just to share...
Love,
Ana
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

benben
Posts: 125
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Hellooo Neuropathyiiiiiiiiiii

Postby benben » Wed Jun 07, 2017 1:04 pm

Freddy87 wrote:Soooo...
I was sitting on my chemo chair for the first time this afternoon and i was feeling pretty damn great. Drunk 2 1/2 liters of water and moved around...

When there were only 10 ml left from my Oxi it has begun: neuropathy! Didn't feel my mouth, my hands and feet startet to feel funny.. stings in my throat and in my eyes... and now I'm having spams in my hands. Doesn't hurt.. it only feels funny..

Anyone BTDT on the frigging FIRST DAY?

Anyways, I'm still happy that I didn't had an allergic reaction and was able to get the first eternal-youth-juice inside of me :)

Just to share...
Love,
Ana


Hi Ana,

Yes I did experience neuropathy during my first treatment - it's not uncommon.
My first treatment about mid way through I developed first bite syndrome. By mid next day it was gone and I had no neuropathy symptoms until round #2 - which I finished yesterday.
Yesterday I did not have any symptoms until I arrived home. I went to juice up on organic carrots,lettuce,apple,and ginger. Getting the cold carrots out I had my first tingling cold sensation.
Also while on the computer typing I noticed some numbness in my fingers - this numbness only lasted maybe five minutes. The cold sensitivity also seemed temporary as later last night it had gone.
Today for breakfast I still had first bite, but now at lunch I had no first bite. So it seems my neuropathy reactions fade fast within 24 hours - at least so far. Now I just need to get my darned white blood count back up.

hopefully you'll have quick recovery from neuropathic effects too.
Good luck with the entire "eternal-youth-juice" experience.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Current - 6 treatments done, LOW WBC/ANC/Platelets.
Attempting to reach at least 8 sessions. Treat 7 most likely delayed

mariane
Posts: 534
Joined: Sun Sep 13, 2015 6:16 pm

Re: Hellooo Neuropathyiiiiiiiiiii

Postby mariane » Wed Jun 07, 2017 1:27 pm

I had 6 oxaliplatin treatments and experienced neuropathy after each of them. The last neuropathy lasted for 3 days. It is completely gone. I am 1.5 years post oxaliplatin. Some on this forum recommended acupuncture. I walked every day. It helped me to stay calm.
mom of 8 years old twins, dx @ 40 with upper rectal cancer, 10+ liver mets in 6/2015, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

helen098
Posts: 1996
Joined: Sun Jul 01, 2007 2:07 pm
Location: Forest Hills New York

Re: Hellooo Neuropathyiiiiiiiiiii

Postby helen098 » Thu Jun 08, 2017 1:08 pm

During my first treatment I felt the pains from the cold
And later that day forgot how to swallow (just for a second and it never reoccurred but what the hell)
Keep on top of it and tell the onc everything
This is not the time to be quiet and brave

Room temperate food and drinks become your friends

I had the cold sensitivity all through chemo and a while after
11 years later I still have neuropathy (well controlled with meds but still there)

Chemo will become normal thing to do every few weeks and a whole lot less scary
stage 3A surgery 6/6/6 finished chemo jan 07
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09

User avatar
LPL
Posts: 273
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Hellooo Neuropathyiiiiiiiiiii

Postby LPL » Thu Jun 08, 2017 2:05 pm

helen098 wrote:
11 years later I still have neuropathy (well controlled with meds but still there)

Can I ask what meds you take that is helping your neuropathy? My DH did not get Bad neuropathy but I've read that sometimes it can get worse after you have stopped the treatments, so it would be good to know just in case...
Kind Regards /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

helen098
Posts: 1996
Joined: Sun Jul 01, 2007 2:07 pm
Location: Forest Hills New York

Re: Hellooo Neuropathyiiiiiiiiiii

Postby helen098 » Fri Jun 09, 2017 11:40 am

I started with vitamins, then pain meds, then the gaba drugs none worked for me and the pain was almost unbearable.
Every doctor said I should be happy to be alive (I am) and just deal with it (I tried but no I could not)

Eventually with a good swift kick in the butt from the colon club I went to a pain management doctor who was the first and only doctor to tell me I didn’t have to be in pain for the rest of my life with no hope.
I have been taking 10 mg of methadone once a day for about 4 years now and have had the neuropathy for 10 ½ years, most of the time I am pain free
Still have the stiffness crappy balance and weird feeling in my hands and legs but I can function.

If it continues and your regular docs say there is nothing they can do please see a pain management doctor you have nothing to lose but a copay and a hour or so of your time.

I have had no side effect with the methadone other than the mental but once I said FU to anyone who says otherwise I am fine.

I am reminded of something my dad used to say, he has been gone 22 years and I still remember his attitude towards “embarrassing items”
He was buying something medical for my grandparents (don’t remember what it was but I was so embarrassed to even be in that aisle of the drug store) and asking him why he wasn’t embarrassed to have to purchase X.
His response was why should I be embarrassed, x is legal and I am paying good money for it, I have no reason to be embarrassed.
My dad was great like this his only problem with feminine products was that he would purchase the best value not the brand you asked him for.
Nothing embarrassed him, but if someone even the dog/cat threw up he would pick it up and then throw up himself.
stage 3A surgery 6/6/6 finished chemo jan 07
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09

User avatar
LPL
Posts: 273
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Hellooo Neuropathyiiiiiiiiiii

Postby LPL » Fri Jun 09, 2017 2:40 pm

helen098,
Thank You for sharing what you have tried
and what has helped you !
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

Basil
Posts: 128
Joined: Thu Mar 16, 2017 12:33 pm

Re: Hellooo Neuropathyiiiiiiiiiii

Postby Basil » Fri Jun 09, 2017 8:16 pm

I had neuropathy after round two of oxali and it keeps creeping and creeping. I'm nine days out from the round five infusion. Neuropathy is gone but still have cold sensitivity to extreme cold. It's getting longer and more pronounced with each round. I have a three month break after round six and, with luck, will get to recharge my batteries some before starting back up in the fall.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ostomy
pathological complete response
NED
adjuvant chemo cancelled
reversal scheduled 9/25/17
(praying I don't have to add on from here)

[Ana & Alex]
Posts: 74
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Hellooo Neuropathyiiiiiiiiiii

Postby [Ana & Alex] » Fri Jun 09, 2017 11:09 pm

I've been lurking in some of our forum posts looking for reasons NOT TO GIVE up on chemo and I found some pretty convincing arguments and studies.

Today is day three and I'm feeling better. From the start of this adventure I've been feeling strong but after this couple of days I thought I could not stand it anymore... now it's finally getting better.

I'm sorry for ranting. I know there are people in this forum who are suffering a greater loss and 100000000 times as me, have gone through chemo more than one can report on one paragraph of text, are Stage IV and have other challenges to deal with. Maybe... maybe I'm being a whiner and a baby...

Sometimes I just look at the others 29 year olds and I'm just so jealous...planning their weddings and families and vacations and just being uncouncious and free and silly.. living life while I sit here, interrupted, not knowing where this path will leed.

I'm scared of oxi. It really scared the hell out of me... !!!
But I'm gonna sign up for the next one. And then we'll see.

One day at a time...
And today I'm already feeling better.

I'm sorry for whining once again..
And thank you for your stories... they give me strength and hope..... a lot of it!

Love,
Ana
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

User avatar
CRguy
Posts: 9133
Joined: Sun Feb 10, 2008 6:00 pm

Re: Hellooo Neuropathyiiiiiiiiiii

Postby CRguy » Sat Jun 10, 2017 12:00 am

Freddy87 wrote:I'm scared of oxi. It really scared the hell out of me... !!!
But I'm gonna sign up for the next one. And then we'll see.

One day at a time...
And today I'm already feeling better.

I'm sorry for whining once again..
And thank you for your stories... they give me strength and hope..... a lot of it!

Love,
Ana

Ummmmm yeah sista'

YOU GET IT ...
BUTT ....:
not whining ... it IS what the EFF it IS and we all deal with it as best we can

Rant / Vent / ok ok yeah well maybe whine :shock:
BUTT it is what we need to deal with and you are just One of US here on the Journey !

Oxi makes a difference BUTT not so much that you should be married to the stats ????
IF oxi kicks your butt ... talk to your Docs and decrease dose ? slow the infusions ? OR kick it to the curb ?

YOU are the patient
The DOCS be YOUR "shepherds of health"

IF oxi is NOT in your health's best interest
Talk to your DOCS

Harmony
CR
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Tdubz
Posts: 77
Joined: Sun May 07, 2017 11:01 am

Re: Hellooo Neuropathyiiiiiiiiiii

Postby Tdubz » Sat Jun 10, 2017 12:20 am

You got this Freddy. I'm pretty sure we all feel the same way as you from time to time. One day at a time. Yeah, it sucks for a few days, but then you have a week and a half of "good" days! Enjoy those days as best you can!

Neuropathy got me this week (3rd treatment) for the first time. Just a slight numbness and tingling in the tips of my fingers that comes and goes. Cold sensitivity was much worse this round. Still experiencing both on day 5.

[Ana & Alex]
Posts: 74
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Hellooo Neuropathyiiiiiiiiiii

Postby [Ana & Alex] » Sun Jun 11, 2017 7:48 am

Forth day after oxaliplatin and on 3500mg Xeloda every day and I'm still feeling like I'm going to die.

Nausea, shivering, neuropathy... and I feel so weak.
Was at the hospital today and bloodwork seems ok.
HOW THE HELL did you people survive this for months?

I'm loosing my shit.
Oh god.
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

Tdubz
Posts: 77
Joined: Sun May 07, 2017 11:01 am

Re: Hellooo Neuropathyiiiiiiiiiii

Postby Tdubz » Sun Jun 11, 2017 8:13 am

Freddy87 wrote:Forth day after oxaliplatin and on 3500mg Xeloda every day and I'm still feeling like I'm going to die.

Nausea, shivering, neuropathy... and I feel so weak.
Was at the hospital today and bloodwork seems ok.
HOW THE HELL did you people survive this for months?

I'm loosing my shit.
Oh god.


My bad days have usually been the end of day 2 through day 5. It gets better. I'm on folfox so it might be a bit different then the pill though. Stay strong and remember that you are getting this medicine for a reason. When I feel bad, I imagine all the little cancer cells getting their butt kicked by the chemo and I know that I'll feel better in a few days.

Be sure to talk to your onc about the side effects. There might be some things they can do to help. Good luck with your journey my friend!

[Ana & Alex]
Posts: 74
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Hellooo Neuropathyiiiiiiiiiii

Postby [Ana & Alex] » Tue Jun 13, 2017 3:23 am

Dear all,

Thank you so much for your kind words.
The last days have been very hard, psychologically and physically speaking, but I'm finally getting better.

The two first days were the worse regarding neuropathy. Then it got better, but from day 2 I got this dreaded feeling that my body would fall apart at any moment and very strong nausea. I was loosing my mind.

I don't now if the Oxi has finally wore off or if the new drugs are better for managing nausea but since yesterday I'm feeling a LOT better. So I can manage. 8)

Just wanted to update.
Thank you so much for Always being a light in the end of the tunnel...

PS: Dear CRGuy
I will try my best to do the Oxi. Not because of the stats, but because I need to do everything I can so than I don't have to deal with this crap anymore. No one really knows if it makes a difference, but I will try it until I can. I've spoken to my oncologist and she said, if the neuropathy isn't gone until the next round, we are reducing the dosage. And I'm taking your tipp and asking for a slower infusion rate for the next time around.
You are always such a great deal of help.. thank you!
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

[Ana & Alex]
Posts: 74
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Hellooo Neuropathyiiiiiiiiiii

Postby [Ana & Alex] » Sat Jul 01, 2017 2:40 am

Second round yesterday after a 2-day delay because of low WBC.

Different strategy this time, adding some Dibondrin to the mix and a 5 hour drip of Oxi.

I still had to come home on a wheelchair because I could not walk the distance to my car. Already obstipated from the nausea meds but I think they are working better this time around.

I can only hope that this next week won't be so rough as the first one.

Just to share, anyways.
Trying to see the light at the end,
Ana
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d


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