The Colon Club

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.

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.

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

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.

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.

It's not really annoying. More like interesting. . I'm weird. LOL

Robino1 wrote:It's not really annoying. More like interesting. . 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.

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!

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.

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.

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.

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

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.

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.

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?