Post chemo issues and severe foot neuropathy

sailingalong

I am nine months post radiation and chemo and still have hand tingling and finger numbness along with severe foot neuropathy (albeit somewhat better than five months ago). A month after chemo my feet (and left leg up to my knee) got severely worse from just the pins and needles feeling that developed after the fourth chemo treatment. So much so that I could barely walk. It felt like a combination of walking on sharp nails and numbness; I would make a left or right turn out of nowhere as my balance was out of wack and I couldn't feel exactly where my feet were. I was told there was nothing you can do, it will take time to recover - everyone is different, and it could last 6 months to a couple years or ten years or in rare cases never go away. Of the majority of posts I have read roughly 63 percent of people had neuropathy lasting six to ten years, 31 percent more than ten years and that answer didn't sit well with me. Additionally, almost everyone stated it took a minimum of one year after chemo to even start feeling normal again, and my assumption is that means the new normal.

I have researched a lot on this topic and have read a ton of posts on multiple cancer network sites. It would be impossible to post everything I have gone through so I will share what I have found works for me and was very common with a majority of others. I will update this post regularly and update anyone who would like to both share and contribute with each other on this topic.

Like most everyone who has been diagnosed with cancer and especially post radiation/chemo I changed my lifestyle, diet, habits etc. While it is difficult to say what a certain change or potential remedy may have on a specific post chemo effect(s), (especially since I am only nine months post chemo), I have found the following to be most beneficial.

Alcohol definitely has an adverse effect on foot neuropathy, while it may lessen the sharp pains temporarily, but the negative effects last for days. I completely cut out alcohol and it has made a huge improvement.

Warm water soaking : with Epson salts in a vibrating foot tub seems to do wonders and is shown to improve circulation and promote nerve repair. I use a foot balm afterwards to keep my skin from cracking and drying out.

Exercise: is key (especially during chemo). I had several people tell me during chemo " keep your feet under you", and wish I had done so more. The fatigue tells your body to rest. I joined the local YMCA and began a regiment of various weight machines, mild cardio and walking to try and get my feet back. They had a Livestrong program which I highly recommend that incorporated the above as well as Yoga, pool exercises and Ti-Chi. The Ti-Chi I found is difficult to do right now and instead practice that at home following a youtube video when my feet cn handle it. When I first started, I couldn’t walk more that 30 steps before I had to rest. I now am walking 7000+ steps a day in addition to my hour workout and two miles of walking around the gym. I still have to rest around every 900 to 1500 steps but it is a huge improvement.

Supplements: I am taking basic vitamins but more importantly am doing extensive research on ancient Chinese remedies, essential oils and western modern holistic approaches. This topic I will share in a few weeks. If anyone would like to contribute, please message me and I will gladly research and incorporate into separate future post.

Juicing,, something I never really considered till I met a 27yr cancer survivor who was adamant about me trying it. For me, within just a couple of weeks, I noticed better focus, less fatigue and a huge improvement from the chemo brain fog I was dealing with. She got me into juicing 4 times a week alternating between fruit and vegetable juices. It’s been difficult to get started with and takes some effort, but I am definitely seeing results.

Massage therapy,,, I discovered my cancer center has a wellness center attached to it. They do various types of massages, different time lengths along with chi, aroma and a few others. I had a friend many years ago gift me a massage after finding out I had never had one. I was so sore afterwards I swore never to get a massage again! That was until they explained I must have gotten a deep tissue massage, ironically, I remembered the masseuses’ name was Helga!, and that there were other types of massages. Who knew, lol? Anyhow I digress, my massage therapist tailored a massage to concentrate on my limbs promoting blood flow to my hands and feet. When I started this therapy I had zero feeling in my feet. Something she was surprised about even when targeting pressure points trying to get a reflex response. After a couple months, to my surprise, I started feeling my feet again and she was getting reflex responses now! I highly recommend this, and a note, I schedule my appointments for a Friday afternoon after my YMCA workout so the massage and relaxation from it isn’t lost and I can enjoy over the weekend.

Sound therapy,,, also known as Tibetan signing bowls is a non-proven therapy. I have tried it several times and really enjoyed it. It promotes physiological and mental well-being that purportedly helps the body heal. I honestly cannot afford this on a regular basis and have started on a similar path that falls under the same umbrella of sound therapy called the neurochemistry of music. This is something that several universities are studying and has found its way into many clinics today. Basically, the body resonates at a certain hertz rate and 432hz mediation and music sessions are appearing to show positive clinical results. A simple web search or YouTube search of 432hz mediation music can start you on your search towards finding if this is something you would like to pursue. I have had such good results from it I have invested in a true lossless Dolby Atmos surround sound system and use it all the time.

I hope this post helps, please feel free to message me with any tips and remedies you may have or could suggest. There are so many aspects to everyone’s cancer journey, I find doing so much research can be exhausting in and of itself. I am just diving into cancer patient networks and wanted to give back what I have found works for me. I know my road to recovery is just beginning but to those searching hang in there and push through it.

Nolan59

Hi!

I had stage 3 colon cancer, surgery and 6 months of FOLFOX. The neuropathy for me started really after treatment. It's been 15 months since last treatment and I have severe N in my feet and moderate in my hands. I think I have improved somewhat over the months. I feel the same way you do about it. You are not alone.

I really like your tips and insights. Keep them coming. My best to you for all healing you need.

beaumontdave

Hi, I was the same as the first reply, Stage 3, Folfox, numb hands, feet, and other issues. The hand/foot nerve stuff went as long as 2 1/2 years after, and as for any lingering effects, I have had life-long CMT, a nerve disorder that has its own effects, which are hard to separate, even now. As for going the healthy life-style route, I went with some changes for a while, but eventually ate and drank as I pleased, without any supplements/medicines but the Statin, aspirin, multivitamin, occasional Xanax early on, and later the 'water pill' for BP lowering. All that is to just say, many make good changes and better choices, but if you don't, many of us still got clear and past any further cancer issues, anyway. My view on it all, is that if you're able to find contentment, comfort, and even joy in the little routines of your life, that has more of a bearing on the quality, then abandoning these for a perfectly healthy regime. I admire those who do such, I just decided I like me more, enjoying life's small pleasures, rather than living in restraint. To each their own, good luck to you…………………..Beaumontdave

bangle

I actually was wondering about trigger thumb or finger. I started having that around 1 year out from treatment. At first I thought it was just me getting old and using my hands so much. Then I met up with a friend who had had breast cancer and she also has some trigger thumb issues saying it was something you deal with after treatments. I am two years out from surgery and 1 year 6 months from my last of 12 treatments. I just keep hoping it will get better. Numbness in my feet is all that I deal with other wise. I like so many had Folfox, and the buddy bag.

beaumontdave

https://csn.cancer.org/discussion/comment/1723044#Comment_1723044

I had trigger-finger on the index one on my dominant hand, but I figured it was from hard labor. Oddly now the middle one, next door has it, mostly. That's 17 years after chemo, so I'm guessing it's the work………

bibliophile

New here. Diagnosed with Stage IIIC in July 2023, followed by 6 months of CAPEOX. The neuropathy got progressively worse through treatment and continued to do so for 6 months after treatment was done. The worst was numbness in my feet. I drive a stick, and that was impossible because I couldn't feel the tension balance in the two pedals, and I was having trouble with balance, so my oncologist referred me to a physical therapist. I was skeptical, but I saw a lot of improvement. We worked mostly on balance exercises, but in the process the neuropathy itself actually improved.Maybe that was just the time factor, but it improved a lot faster than it got worse, so I think there was something to the PT. I can drive again and back to running and biking and everything else I used to. Still some tingling in the hands and feet, but nothing that interrupts my day except my handwriting isn't worth a hill of beans. Interestingly, I had to have a lung resection this past March and my neuropathy got a lot worse again afterwards even though no more chemo. Can the damage done to nerves in surgery cause the rest of your nerves to be under more strain (for lack of a more scientific way to describe it)?

beaumontdave

https://csn.cancer.org/discussion/comment/1723072#Comment_1723072

Hi, I'd think nerve damage is widely varied in each case. They ended half of my potential 6-pack [lol] when the did an open surgery for my liver resection, cutting a main muscle nerve to get there. The original colectomy cut some nerve controlling orgasmic function, sending the semen to my bladder rather than the usual direction. Since the surgeon warned that some wind up impotent from the lower colon surgery, I was quite happy just to find everything else worked just fine. Did he nick something, cut some particular nerves? I don't really know, but that function did not return. To directly answer your question, I don't know if other nerves are 'overworked' by ending some of them, but I doubt it. Nerves aren't at all like muscles, level of use seems only an issue in non-use, not 'overwork' as far as I've heard or understand……………………..Dave

smithdoor

FYI

I Dianoge with Stage 4 colan cancer in Aug 2009

Almost 16 years ago.

Now I have had 106 chemo treatments.

Now on (fruzaqla) for last 18 months

I hope helps

Dave