oxaliplatin side effects - 9 years after treatment

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Soccermom2boys
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Re: oxaliplatin side effects - 9 years after treatment

Postby Soccermom2boys » Thu Nov 30, 2017 11:55 pm

Robino1 wrote:I have a new side effect and the oncologist says it's not from oxi. When I bend my head down, it feels like an electrical impulse shoots across the tops of both feet. It only happens when I bend it down.


While this is not a side effect I personally had from Oxaliplatin, I have read that one from several other members on here so you are not alone and your oncologist is incorrect to say it’s not from the chemo. That always annoyed me when you would go to them with a side effect and they try and tell you it’s not from the chemo when you come on here and you hear multiple other people with same issue(s). Don’t get me wrong, I am not saying I would dismiss the medical profession, but unless they have walked in our shoes (literally!) they have no way of fully understanding how our lives are impacted by these harsh treatments.

I am identical to Susie in that my neuropathy didn’t kick in until a month after I finished my 8th/final round, but I did FOLFOX. So I didn’t fully comprehend what freight train was heading my way. 18 months later and my neuropathy is just as Susie describes, annoying and constant but not catastrophic I can’t function and it’s all in my feet, the fingers just have a small tingling once in a while but nothing that affects my motor skills, etc. I am just a little sad to think my feet will never feel normal again, but I know in the scheme of things, could be worse, right? I think that’s the cancer patient’s/survivor’s motto.

It’s so conflicting because yes, we want the best chance to live, but we want to have quality of life as well and it’s easy to feel like a statistic when you go through cancer treatments. Will be interesting to see if you doing all of these tests comes up with anything conclusive? Seriously though, you are not alone on that one so look that up in the search tool to see what others who have dealt with it have said. Fingers crossed for you it goes away after you finish using Oxaliplatin.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

hawkowl
Posts: 121
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: oxaliplatin side effects - 9 years after treatment

Postby hawkowl » Fri Dec 01, 2017 12:23 am

I am about 2 1/2 years out from my last chemo, and have severe neuropathy (including peripheral, CNS, and autonomic---see the thread on dysautonomia). I was absolutely warned that this was a possibility, and even stopped oxaliplatin after 8 cycles to be safe, but the neuropathy only really started after that.

I have had only limited success with topical creams...including the compounded one mentioned above...very transient pain relief, frankly not worth the trouble. I have had moderate success with physical therapy (learned to compensate for the lack of sensory feedback) and do get some pain relief from gabapentin, lorazepam, and MMJ.

I am definitely NOT bitter about the neuropathy. Yes it sucks, and i am totally disabled, but I am also grateful that i had a complete pathological response to neoadjuvant FOLFOX and chemoradiation, and frankly, if I had it to do over again, i would do the exact same thing. Would I have had the same outcome with FOLFIRI? Perhaps, but who knows? Anyways, I would rather be grateful for what went right than bitter about what went wrong.

There are some Facebook groups for people dealing with long term issues from treatment, and I have found the support and advice to be helpful.
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

Ron50
Posts: 695
Joined: Fri Feb 10, 2006 7:04 pm

Re: oxaliplatin side effects - 9 years after treatment

Postby Ron50 » Fri Dec 01, 2017 2:19 am

I never had any of the platinum drugs. I had chemo when late stage3 was being treated with a combination of %fu enhanced aevery second week with 9 tablets of levamisole. Levamisole was in the family of drugs called immune modulators. It was banned for human use in 2001 for sometimes fatal side effects. I had no neuropathy during or at the end of chemo. It set in after three years and was diagnosed by a neurologist via nerve conductivity tests. It has continued to worsen over twenty years to the point where my doctors believe it may be interfering with colon motility as I suffer increasingly from constipation. Attempts were made to treat my neuropathy with Neurontin, lyrica ,endep , norspan and fentanyl patches . None of them helped with the symptoms. In 2000 I was averaging 50 miles a week walking. When I would finish my walks I would do some cool down exercises. I would sit down for a rest. After twenty minutes at rest I would nearly seize up and I gradually lost touch with my feet and legs . I have found evidence that a combination of 5fu and levamisole also caused neuropathy. At 67 I now walk like an 80 year old. My oncologist maintains that chemo has given me the 20 years , on the other hand my surgeon described it as "that filthy stuff" . Chemo may have extended my life but I believe it has destroyed much of the quality and in the end will shorten it considerably
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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Robino1
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Re: oxaliplatin side effects - 9 years after treatment

Postby Robino1 » Fri Dec 01, 2017 8:23 am

I've been reading these threads for quite a while and remembered seeing something about someone bending their head and getting sensations like what I'm feeling.

The bottoms of my feet are still fine. I kick my shoes off and place my feet on the cold floor. In breast cancer patients, they wear cold caps to help the blood vessels to close up somewhat. I think keeping my feet cold helps me in the same way.

At least the MRI will rule out other issues that may be thought of. ;). It's just weird that it only 'zings' across the top of both feet. Nothing down the leg. It doesn't hurt at all. Just a strange sensation.

Oxi has been reduced to 65%. I've just had my 9th treatment.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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susie0915
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Re: oxaliplatin side effects - 9 years after treatment

Postby susie0915 » Fri Dec 01, 2017 8:55 am

Soccermom2boys wrote:
Robino1 wrote:I have a new side effect and the oncologist says it's not from oxi. When I bend my head down, it feels like an electrical impulse shoots across the tops of both feet. It only happens when I bend it down.


While this is not a side effect I personally had from Oxaliplatin, I have read that one from several other members on here so you are not alone and your oncologist is incorrect to say it’s not from the chemo. That always annoyed me when you would go to them with a side effect and they try and tell you it’s not from the chemo when you come on here and you hear multiple other people with same issue(s). Don’t get me wrong, I am not saying I would dismiss the medical profession, but unless they have walked in our shoes (literally!) they have no way of fully understanding how our lives are impacted by these harsh treatments.

I am identical to Susie in that my neuropathy didn’t kick in until a month after I finished my 8th/final round, but I did FOLFOX. So I didn’t fully comprehend what freight train was heading my way. 18 months later and my neuropathy is just as Susie describes, annoying and constant but not catastrophic I can’t function and it’s all in my feet, the fingers just have a small tingling once in a while but nothing that affects my motor skills, etc. I am just a little sad to think my feet will never feel normal again, but I know in the scheme of things, could be worse, right? I think that’s the cancer patient’s/survivor’s motto.

It’s so conflicting because yes, we want the best chance to live, but we want to have quality of life as well and it’s easy to feel like a statistic when you go through cancer treatments. Will be interesting to see if you doing all of these tests comes up with anything conclusive? Seriously though, you are not alone on that one so look that up in the search tool to see what others who have dealt with it have said. Fingers crossed for you it goes away after you finish using Oxaliplatin.


It can be quite annoying. Moving helps. It's just a constant weird feeling in your feet. Not painful. You're right, it could be worse. I'll let you know how the acupuncture goes. Three sessions in, no major improvement, maybe a little but we'll see. I think if there is no real pain, the improvement may be harder to achieve I don't know.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, 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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5

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Robino1
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Re: oxaliplatin side effects - 9 years after treatment

Postby Robino1 » Fri Dec 01, 2017 9:33 am

It's not really annoying. More like interesting. :D. I'm weird. LOL
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Tdubz
Posts: 144
Joined: Sun May 07, 2017 11:01 am

Re: oxaliplatin side effects - 9 years after treatment

Postby Tdubz » Fri Dec 01, 2017 10:57 am

Robino1 wrote:It's not really annoying. More like interesting. :D. I'm weird. LOL


I have the same thing. It started on maybe my last treatment and is slightly better now. I think it’s called le hermittes sign or something like that. There’s a thread about it somewhere on here. My onc said it could be related to oxi but didn’t provide any solutions for it. On me, when I nod my head forward, I get a shooting sensation from my knees down to my feet. It is quite strange. I also get the same sensation in my arms if I fully extend them. And then there’s the pulsing shock sensation I just randomly get in my hands and feet.

CAGirl
Posts: 59
Joined: Fri Aug 25, 2017 4:55 pm

Re: oxaliplatin side effects - 9 years after treatment

Postby CAGirl » Fri Dec 01, 2017 2:49 pm

I'm trying to figure out if my back pain issues are Folfox-related. 2 1/2 months out after chemo. I do have tingly hands and especially feet but have gotten used to it.
My onc was really good about closely monitoring my oxali dosage. I did 6 full Folfox treatments, no oxali for #7, reduced for #8, none for #9, reduced for #10, then dropped completely. It was mostly me saying I wanted to get as much insurance against recurrence as possible. (He would have dropped it sooner.)
Anyway, now, I have a couple of back problems.
First, I get a shooting, arthritic-like pain in various locations along my spine. It's not drastic enough for pain-killer but concerning nonetheless.
Second, I was paralyzed with pain for several days after throwing out my lower back. It didn't feel muscular, but a doctor friend of mine said spasms sometimes don't feel like deep muscle pain but can be sharp like this was. I did have a stress fracture back there 25 years ago (thank you, ballet!), and it acts up when it rains (which it did last week) and when my period comes on (which it felt like it was going to but never did.) And I lifted my 4-year-old, 43 pounder.
Of course, my mind has gone to bone mets, cervical cancer, etc.
Had a back x-ray, showed nothing. Pushed CT scan up a month. Didn't show any bone mets.
My sis-in-law has said I should get an MRI. Anyone agree?
It got better with hydrocodone, heat & ice.
Still feels twinge-y and like it will give out any minute now.
Anyone think this could be my body reacting to Folfox and/or stress? In other words, any experience like this out there?
Sorry -- maybe this should be its own post?
Thanks!
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-mo CT scan post chemo 11/17 slightly larger lung nod (incr. from 7mm to 8 or 9mm)
CT scan 3/18 - NED
clear CT scan 1/2019 NED

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: oxaliplatin side effects - 9 years after treatment

Postby susie0915 » Fri Dec 01, 2017 3:03 pm

CAGirl wrote:I'm trying to figure out if my back pain issues are Folfox-related. 2 1/2 months out after chemo. I do have tingly hands and especially feet but have gotten used to it.
My onc was really good about closely monitoring my oxali dosage. I did 6 full Folfox treatments, no oxali for #7, reduced for #8, none for #9, reduced for #10, then dropped completely. It was mostly me saying I wanted to get as much insurance against recurrence as possible. (He would have dropped it sooner.)
Anyway, now, I have a couple of back problems.
First, I get a shooting, arthritic-like pain in various locations along my spine. It's not drastic enough for pain-killer but concerning nonetheless.
Second, I was paralyzed with pain for several days after throwing out my lower back. It didn't feel muscular, but a doctor friend of mine said spasms sometimes don't feel like deep muscle pain but can be sharp like this was. I did have a stress fracture back there 25 years ago (thank you, ballet!), and it acts up when it rains (which it did last week) and when my period comes on (which it felt like it was going to but never did.) And I lifted my 4-year-old, 43 pounder.
Of course, my mind has gone to bone mets, cervical cancer, etc.
Had a back x-ray, showed nothing. Pushed CT scan up a month. Didn't show any bone mets.
My sis-in-law has said I should get an MRI. Anyone agree?
It got better with hydrocodone, heat & ice.
Still feels twinge-y and like it will give out any minute now.
Anyone think this could be my body reacting to Folfox and/or stress? In other words, any experience like this out there?
Sorry -- maybe this should be its own post?
Thanks!

It sucks how now we worry every little ache or pain could be cancer. Last Saturday I woke up noticed an dull pain in my back/hip. The only think I could think of is I picked up my 2 year old niece with just my right arm as we were going downstairs and carried her down on the right hip. I didn't notice anything at the time but maybe. But all week I have had periodic thoughts of wondering if it could be cancer. I did just have a pelvic/abdominal scan in October that was clear so I'm sure I just did something. Yours is prob just muscular, I don't know if folfox can cause pain like that, but chemo causes a lot of weird side effects. I understand the worry.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, 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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5

heiders33
Posts: 347
Joined: Sat Nov 04, 2017 11:08 am

Re: oxaliplatin side effects - 9 years after treatment

Postby heiders33 » Sat Dec 02, 2017 5:52 pm

The last few days I’ve started to feel some slight tingling in my fingers, unrelated to cold. No pain or numbness, just tingling. It’s not pronounced but it’s there. Could this be neuropathy setting in? I start my third cycle of Xelox on Monday.
36 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
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Re: oxaliplatin side effects - 9 years after treatment

Postby susie0915 » Sat Dec 02, 2017 6:19 pm

heiders33 wrote:The last few days I’ve started to feel some slight tingling in my fingers, unrelated to cold. No pain or numbness, just tingling. It’s not pronounced but it’s there. Could this be neuropathy setting in? I start my third cycle of Xelox on Monday.

It could be. Let your oncologist know, she can maybe adjust your dosage.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, 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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5

Leeloo
Posts: 57
Joined: Sat Oct 04, 2014 5:02 pm
Location: Glasgow, Scotland, UK

Re: oxaliplatin side effects - 9 years after treatment

Postby Leeloo » Tue Dec 12, 2017 4:02 am

Hi Everyone,
Was your op on the right side,near your appendix? If it was it would be worth asking for your B12 level to be measured. My doc tested my levels and was surprised they were low as I did not have the other markers for pernicious anaemia. I learnt on this forum that if the bit of your bowel where B12 is absorbed is removed it can cause neuropathy, that typically gets worse about 18 months after surgery as the body’s own stores of B12 run out about then and are not able to be refilled. I now get injections every 3 months, and these help with the worst of the tingling. I still have some chemo clumsiness, but the injections help stop the tingling and tiredness. This willl not be the answer for everyone, but may help someone else.

The good news is that following the Scott research trial comparing 3 months chemo with 6 months they now know that 3 months is as good for most patients, so people get the chemo benefits without such severe chemo induced neuropathy.
Leeloo
(R) hemicolectomy 13/08/13
Stage IIB T4N0(0/6)M0
Xelox x 4 (Scot trial)
NED

delemur
Posts: 13
Joined: Fri Dec 08, 2017 10:54 pm

Re: oxaliplatin side effects - 9 years after treatment

Postby delemur » Tue Dec 12, 2017 9:41 pm

You may want to try a cannabis-infused salve. I used one on my hands and feet during my CAPOX & FOLFOX treatments and my neuropathy was manageable during treatment and hasn't flared up since.
- Sex: Male
- DX Age: 41
- Tumor Location: Proximal = 9 cm; Distal = 1.5 cm
- Tumor Type: Adenocarcinoma
- Tumor Size: 1.7 x 1.2 x 0.8 cm
- Tumor Grade: G2: Moderately differentiated (intermediate grade)
- Stage: IIIB
- Positive Lymph Nodes: Yes
- Radiation + Chemo: 03/16/17 - 29 days / 3000mg Capecitabine
- Surgery: 05/16/17 - LAR & Diverting Ileostomy
- Chemotherapy: 06/16/17 - 62 Days CAPOX / 56 Days FOLFOX
- Surgery: 11/27/17 - Ileostomy Reversal

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: oxaliplatin side effects - 9 years after treatment

Postby susie0915 » Wed Dec 13, 2017 9:21 am

heiders33 wrote:Has anyone experienced professional massage of the hands and feet helping with neuropathy, at least temporarily?

I'm trying acupuncture right now. I've had 3 or 4 sessions no real improvement t yet. I have a foot massager that does make it feel better temporarily. I'm not sure if it's harder to see improvement if there isn't a lot of pain. My hands have gotten better, I did have Raynaud's before cancer but right after chemo I would drop things, don't do that anymore. Mine is mostly tingling and uncombortable on hard surfaces on the bottom of my feet.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, 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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5

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susie0915
Posts: 936
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: oxaliplatin side effects - 9 years after treatment

Postby susie0915 » Wed Dec 13, 2017 9:23 am

delemur wrote:You may want to try a cannabis-infused salve. I used one on my hands and feet during my CAPOX & FOLFOX treatments and my neuropathy was manageable during treatment and hasn't flared up since.

Where do you get this? Do I have to go to a dispensary?
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, 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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5


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