Oxaliplatin and neuropathy

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dbrr
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Oxaliplatin and neuropathy

Postby dbrr » Sat Dec 24, 2016 10:08 am

Six years after my last of twelve 5fU w/oxaliplatin infusions given over a six month stretch, the neuropathy in my feet, especially, but also my hands and lips is making me very nearly totally insane. I am at my wit's end as every step means pain, sitting still means pain, and I twitch all night waking both my wife and me up from the sensations in my feet. I did not agree to the chemo because I wanted it (I trusted my surgeon had gotten it all); it was to assuage the fears my wife had as it was in my lymph system. Had I been alone I would have taken the gamble. I find myself constantly angry with myself for having agreed to this regimen, and sometimes, unreasonably, my anger spills over to her. I felt really good after the surgery and was walking three miles a day, but my life since the first treatment has been largely sedentary. Walking ramps up the pain. Not happy with the chemo brain either which continues. No sign of letup there.

I stopped seeing the oncologist several years ago as I was sick of her lies about oxalipatin's toxicity and after-effects. I wonder if anyone here has heard that oxaliplatin can hang around in a person's system. Maybe it is hiding there somewhere, smirking. I know that any food with B6 makes neuropathy worse, but as I am careful not to ingest any vitamin B6 laden foods, and long ago eliminated all B6 in the supplements I take, I don't think that can be the cause. Rather than lessen, the effects of chemo-induced neuropathy continue to be worsening. It is impossible to feel like a productive member of society. The exhaustion from this constant assault is a force to be reckoned with as well.

Best wishes to all for a happy holiday and a peaceful, healthy new year, and to those of you who had the patience to read this diatribe, thank you. Maybe someone will have a thought that might help.

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muskokamike
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Re: Oxaliplatin and neuropathy

Postby muskokamike » Sat Dec 24, 2016 11:55 am

Hindsight is 20/20. I was in a similar situation back when I had surgery and was told I had a complete response. Chemo was an option and my onc recommended that I do the FOLFOX because my tumor was a T3 even though I had no tumor after pathology. She explained the potential side effects in detail but still said it would be to my advantage to do the mop up chemo and hopefully put the final nail in the cancer coffin. I did the chemo. My neuropathy is for the most part minor compared to yours but the clumsy numbness is a constant reminder of cancer and most likely will be for the rest of my life. If you read this forum long enough you will come across many that took the gamble and did no chemo after surgery and are regretting their decision or worse had a recurrence and are no longer here. There are no guarantees with cancer. Your side effects are severe and it affects your QOL but I still think you did the right thing. You are still here six years later and many here would trade places with you in a heartbeat.
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dbrr
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Re: Oxaliplatin and neuropathy

Postby dbrr » Sat Dec 24, 2016 12:17 pm

Yes, I understand. My goal in writing was not to appear self-pitying. I'm sorry if that's how it looked. I really wonder if the platinum can lurk. I've wondered if there's a chelation or perhaps another process none of my MDs have suggested. They have all shrugged, given up. Today is one of those days that is exceedingly close to intolerable, hence the post. For me I'd have rather had a shorter life that was productive than to try and largely fail to cope. Two friends are corrently dying of colon cancer and a third was just wiped out by metasticized ovarian cancer. They all would give anything to be alive. My former onc did say she'd never seen a reaction like mine, but as I said, the lying was difficult. Anyway my apologies for my post.

zephyr
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Re: Oxaliplatin and neuropathy

Postby zephyr » Sat Dec 24, 2016 12:20 pm

I am sorry you are experiencing continuing neuropathy. I have heard that the neuropathy from oxaliplatin can hang on after chemo is finished. If you don't want to go back to your oncologist, you might consider finding a new oncologist or seeing a naturopathic physician who specializes in cancer care. Going to a pain doctor is another possibility but, if I were in your shoes, I would start with an oncologist or naturopathic doc. There may be a solution to eliminate or lessen the pain without adding extra side effects to your day. I've been told that cancer treatment has changed a lot in the last several years, and there may be something about neuropathy issues that they know now but didn't know then.

If you live in a medical marijuana state, you might consider looking into CBD. If you find a naturopathic physician, he/she can probably guide you there. CBD is a non-psychoactive reliever of inflammation and pain. I just read on an NIH website that "...cannabinoids have been demonstrated to be effective in a range of experimental neuropathic pain models, and there is mounting evidence for therapeutic use in human neuropathic pain conditions." Here's the link:
https://www.ncbi.nlm.nih.gov/pubmed/25160710

I'm not a doctor or nurse but I wonder, is there a possibility that you could be diabetic and that the diabetes is a contributing cause?

I'm sure I cannot imagine the extent of your pain and frustration; I hope you find some answers or a direction from someone on this Board. Sending you wishes for a healthy New Year, and hopes for relief.
Nov-2009 Early stage CRC found during routine colonoscopy
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ANDRETEXAS
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Re: Oxaliplatin and neuropathy

Postby ANDRETEXAS » Sat Dec 24, 2016 12:26 pm

I had the 12 FOLFOX regimen. I also have Type II diabetes which also causes some neuropathy. Today, I would still do FOLFOX if I had to make the decision again. My side effects were not as bad as yours. I had tingling in the tips of my fingers for the first two years after treatment. For the most part that is gone. I still have neuropathy in my feet today, but it's half as bad as it was after completing chemo. I attribute that to walking 2-3 miles a day, along with taking Metanx (Vitamin B complex). The Metanx was not covered by insurance, so I stopped that and am now taking a Super B-Complex vitamin daily. I hope your side effects lessen. Here's to a healthy 2017 for you and all of us. Andre
2014
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cashmere
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Re: Oxaliplatin and neuropathy

Postby cashmere » Sun Dec 25, 2016 9:18 am

Are you taking any medications for it? I have permanent neuropathy (almost 9 years now) and I take Lyrica which let's me have a good QOL. I walk at least 3 miles per day, the only thing I can't do is stand in one place, that is painful.

I have not tried Chelation, but I would be curious if that would help...

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dbrr
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Re: Oxaliplatin and neuropathy

Postby dbrr » Fri Jan 20, 2017 6:14 pm

Thanks to all for your various suggestions. I had tried Lyrica unsuccessfully some years ago, and once again last month for a week or so. The drug and I do not get along: awful psychological effects such as extreme paranoia, and my wife says she thinks I could star in a zombie movie if I could only remember my lines. It increased the neuropathic problems. But it was worth a try.

My naturopath ran a huge number of expensive blood tests on me before the holidays, and at an appointment next month I will hear more about the results. All I know so far is that my bone marrow is disappearing, which could explain quite a few things, I bet. At least Vitamin B6 is under control and there's no diabetes. She says I'm complicated. Never particularly wanted to be an interesting patient.

This health care roller coaster can be quite a trial, and without Obamacare, I might as well hang everything up.

tammylayne
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Re: Oxaliplatin and neuropathy

Postby tammylayne » Sat Jan 21, 2017 10:23 am

Please read my post about my husbands neuropathy journey and how he got relief. Looking at perm disability Tuesday morning...working 48 hours later. Nothing works for everyone...but this medicated creme saved him.

Good luck.
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dbrr
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Re: Oxaliplatin and neuropathy

Postby dbrr » Sat Jan 21, 2017 2:37 pm

It is encouraging to see that something actually helped someone. You and your husband must be thrilled. I look forward to trying it out and will post my results. Very exciting.

MissMolly
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Re: Oxaliplatin and neuropathy

Postby MissMolly » Sun Jan 22, 2017 6:19 am

dbr:
It is 2:30 am as I compose this. I am awake, up and about, due to unrelenting pain. I understand the taxing exhaustion from ongoing pain.

I have had fragile health for several years with multiple, complex conditions. It can be difficult terrain as a patient, as physicians are less and less availing of the focused time, attention, and resources needed to address complex or multi-sourced problems that require individual and detailed clinical management.

My greatest ally came when I enrolled in Palliative Care two years ago. Within Palliative Care I found a patient-centered model of medical access and delivery that was consistently up to the task. Nothing was too tough for my palliative care team to navigate. The team approach across clinical disciplines are impressive, with multiple knowledgable heads thinking, trouble-shooting, and problem-solving.

I would encourage you to source a Palliative Care program within your local community. The focus is on you as a whole person. The goal is to optimize your quality of life within the constraints of your presenting illnesses/conditions. Care and comfort is at the foremost of importance with minimal regulatory or policy interference (ex. access to opiates, access to medical cannibus, access to alternative and holistic treatments).

I understand the deep fatigue that comes from pain that is at the forefront of your being. No one can truly understand severe pain and the depths of its physical and psychological toll unless they have borne witness to pain of similar magnitude. This is pain that has no reprieve and no end date. This is pain that permeates every fiber of one's being. It is the psychological exhaustion and physical depletion owing to pain that remains my greatest nemesis.

The Palliative Care model should be able to piece together a plan to mitigate the severity of your pain.

You need not apologize for expressing that you question whether death might have been preferred to your pained existence and marginal quality of life. I get the intent of your writings at a visceral level. Your have a valid legitimacy to feel the feeling that you do. When pain is so severe that it sucks the life out of you . . . when pain is so severe that you are reduced to mere embers . . . when severe pain goes on for weeks and months and years . . . when you cannot unzip from your body for even a moment to escape pain's ravage effects . . . the questions that occupy the crevices of your mind are valid. I get it. I get what you are saying and share similar sentiment. Unless someone has endured what I have endured, no judgement can they render. No apologies due.

dbrr wrote:This health care roller coaster can be quite a trial, and without Obamacare, I might as well hang everything up


The private insurance market is stable for this calendar year, your policy will remain in place and active. You are not alone in concerns for the future of the Affordable Care Act. 20 million + Americans are in a similar situation and at risk. Please do not give up hope just yet on a replacement plan by the Republican leadership.

Keep a simple focus: You are OK for this year. Your ACA coverage is intact. Work within the framework of this year's insurance coverage. Keep sight on a referral to Palliative Care as a bridge and a figurative lifeline to bring a modicum of pain relief so that you can arrive at a place where your mind and body are less stressed.

Know that I care,
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

dbrr
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Location: Maine

Re: Oxaliplatin and neuropathy

Postby dbrr » Sun Jan 22, 2017 5:38 pm

Karen,

What a fine letter in which you have expressed my feelings far better than I am able. Thank you.

In Maine, where I live, a new law is beginning to take effect. That law makes it illegal to have too much pain. Sounds silly only because it is. I am currently taking more narcotics than will be allowed in a few months and when the deadline comes, I will be cut back by more than half of my current dosage. When I have tried to back off in the past (I do not like being dependent on patches and pills, but have come to accept the fact I have no alternative) the pain ratchets up so much that I am unable to function at all. Can't read, write, move: everything becomes an overwhelming nightmare and my feet scream at me. I am really scared at what this cut-back will mean as the drugs are what allow me to be as productive as I am. I will probably need to find a new primary care physician’s assistant as mine is terrified of dealing with the state. The pharmacist says that all the PA needs to do is write "DX: Cancer" on each prescription, and I will be good to go. The pharmacist shakes her head in disbelief when I explain the PA, and the MD she assists are afraid that maybe I no longer have cancer and are therefore unwilling to stick their necks out for me. Perhaps this bone marrow disappearance anomaly (which I don’t yet understand) will allow them to rethink. The PA has referred me to a pain clinic, but that clinic won't return my calls, and it's been a month since the referral. I’ve been to the clinic in the past as well as one other, and they are both ineffectual and nearly impossible in terms of scheduling. Furthermore they have no ideas that I haven’t already tried. I’ve tried to get them to talk about palliative care. So far that discussion is an uphill struggle.

Karen, thank you. I’m not sure anyone else has ever really understood what this feels like. I am hopeful that hospice will keep you comfortable, and you will be in my thoughts and good wishes. Having your support across all those miles means more than you might imagine.

MissMolly
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Re: Oxaliplatin and neuropathy

Postby MissMolly » Mon Jan 23, 2017 9:37 am

dbrr wrote:Karen, thank you. I’m not sure anyone else has ever really understood what this feels like


dbrr:
I think we were destined to connect with one another, a virtual hand-hold cross the many miles, from Maine to Portland, Oregon.

Your experience with intractable, severe pain is valid. Your feelings are valid. You own no one an apology.

Only those who have misfortune of existing amidst the surreal experience of unrelenting pain can truly empathize and understand the all pervasive depths of pains' horrific grasp.

Of all the many complex health issues that I face, it is pain that has worn me down to my nubs.

I am a former marathon distance runner. I knew the internal experience of pushing my body to its existential limits, the rhythm of my feet taking me the full 26.2 mile distance time and time again. I knew pain before before I knew chronic ill health.

But the pain that has consumed me with the Addison's disease and subsequent avascular necrosis of my hips and jaws is beyond description. It is pain that is not mitigated fully by the full power of multiple narcotics.

How do we ask someone to suffer more, when they are already suffering?

The question of whether life trump's all . . . the argument of medical intervention against all obstacles . . . is a deeply personal lens and decision. I have survived a near death experience where I was neither here on earth nor in Heaven. I survived, by God's/Higher Power's grace, but certainly not by any action of my own. Wherever it was that I was, I was in perfect peace - I felt no pain, I felt no anxiety, as I had no physical body form. I feel uniquely qualified to judge my own life's reason and purpose and decision to enroll in Hospice as the right choice for me. My body is tired and exhausted from the fray of living with the frailty of serious, chronic illness, over many years, and its limitations and pain as a constant and unwanted companion. I am 56 years of age.

My greatest fear has not been death, but rather living an existence where I am consumed in pain and no longer even functionally semi-capable. That I am at this cross-road has made Hospice a natural decision for me. My only regret is that the process is taking a bit longer than anticipated. My body remains amazingly resilient - almost to a fault.

I would encourage you to explore the option of Palliative Care. Palliative Care will open up avenues for you in options for the humanity that is care and comfort. The designation of "Palliative Care" on your medical record will remove you from the onerous restrictions of the National Pain Strategy guidelines issued by the DEA, CDC, and NIH in their formal policy announcement last March-2016. You will not be constrained by the 120 mg morphine equivalent prescription dosing restrictions.

While it is event that we, as a country, have a problem with drug/opiate/heroine misuse of epidemic proportions, overly restrictive access to pain management hurts the many individuals with legitimate, chronic pain. It is a difficult environment to be a person with refractory pain. You are looked at with derision and distrust, even by pharmacy staff.

Pain is pain is pain. Neuropathic pain. Pain due to avascular necrosis. Pain post-surgery. Pain post fall or injury. Pain is like an unwanted houseguest that never leaves.

There is a on-line pain support forum offered by HealingWell.com that I frequent that might be of support and camaraderie. for you. It is small, quaint forum - only a handful of members. But the bonds of friendship and commonality are real. Feel free to find your way to the Chronic Pain forum at HealingWell.com, read and browse through the threads, and join if you feel comfortable. I find the forum to be a source of comfort and understanding.

I hope for you some measure of relief from the pain that crowds out your life. Continue to voice a strong voice for the right for basic comfort. Chronic pain is a game changer.

Know that I care, about you.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

dbrr
Posts: 13
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Location: Maine

Re: Oxaliplatin and neuropathy

Postby dbrr » Sun Jan 29, 2017 9:54 am

Karen,

About a year before my cancer was properly diagnosed, I had an out of body experience due to a bleed, and it was one of the best things I've ever experienced.  Don't know how long it lasted, but I do remember the sensation of total lightness, floating without pain looking down at my body lying there on the floor, mulling over whether I should come back or not, and not really wanting to. It was the realization that some affairs needed to be set in order and not wanting to be found sprawled out on the bloody floor that suddenly brought me back:  back to the pain where I'd cut my head in the fall, and in my abdomen and all my joints, and the solid, unpleasant feeling of being heavy, indescribably heavy, way too heavy to move. That contrast to the sublime lightness of moments before was such a disappointment.  

Near-death, out of body, whatever the appropriate term is, left me with no fear of death and the feeling of certainty that when it finally comes, it'll be something wonderful.  How lucky I was to have that gift.

I will look at the website you have suggested which sounds interesting. Wishing you my best with the hope that you are comfortable.

andy21
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Re: Oxaliplatin and neuropathy

Postby andy21 » Thu May 04, 2017 5:24 pm

This health care roller coaster can be quite a trial, and without Obamacare, I might as well hang everything up.


Fighting cancer even with the best of Insurances is a nightmare. (e.g. Steve Jobs who had access to even late stage Liver transplant)
Without Insurance, it's a Russian Roulette, with a full magazine pistol!
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