Need hope: Neuropathy from chemo

am not dealing with chemo induced neuropathy but research L Carnatine there are studies that show carnatine helps the neuropathy. Caution if you decide to try this amino acid but it from a reputable company ((not the corner drug or wally world.

Look into studies on the supplement L Carnatine it has show to be of use in mitigating neuropathy some what. Google carnatine neuropathy

Hi Pogo,
I did a quick search for Acetyl-L-carnitine and I found this study.
- Acetyl-L-carnitine in painful peripheral neuropathy: a systematic review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498091/
Reviewing all data for acetyl-L-carnitine up to 2019, the researchers concluded "ALC is an effective and safe treatment in painful peripheral neuropathy, especially in diabetic patients. Future studies aiming to assess the duration of the therapeutic efficacy and the optimal dose in larger populations, possibly with longer follow-up periods, are required."

This article from Mayo Clinic explains in lay language:
- Diabetic neuropathy: Can dietary supplements help? https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/in-depth/diabetic-neuropathy-and-dietary-supplements/art-20095406

Thanks!

Was diagnosed with pancreatic cancer stage 4 back in 11/21. Since then I have completed 2 rounds of chemo. They are giving me abraxane
I was in so much pain that it took 10 days in the hospital to get me on a regiment which consists of 150 mg of fentanyl and 30mg of morphine every 4hrs.
I still have pain but bearable. My feet are getting really painful from the chemo. Is there anything else I can take to stop the pain in my toes and feet so I can at least walk.

@kevin5555, welcome. I'm so sorry to hear that you're dealing with pain, especially in your feet, that limits your mobility. This sounds like it might be chemo-related neuropathy. @needshope78 started this discussion about the exact same thing. Check out the helpful responses from members here:
- Need hope: Neuropathy from chemo https://connect.mayoclinic.org/discussion/needshope/

Fellow members @macleish @dugancarol @gigi123 @beachdog have experience with Abraxane (nab-paclitaxel) and may have thoughts to share with you.

Kevin, are you taking Abraxane now? Have you told your oncologist about the feet pain? They may be able to adjust the dosage to prevent further nerve damage.

Tessie63
It has been 2 years since I had chemo and it damaged my hands and feet so bad I use a walker to get around. My feet are also badly dropped from the chemo. I only had 3 treatments because the doctor felt he got all the cancer.
I wish I could go back and change the decision I made to have chemo but it is too late now and I have to make the most of my life now. Every now and then I have my own pity party and a good cry and then I carry on with life.

Hi Tessie, oh gosh, I’m sorry you’re having such a rough time with the lingering neuropathy from chemo. I know you wish you could turn back the clock on your decision to have treatments. Was there an option of you not having chemo for your cancer, with a positive outcome of beating the disease?

I know from experience chemo can be brutal but to be victorious over cancer it has to be stronger than the disease to be able fight it and win. It appears that you’re cancer free? Even though you’re having to use the walker and neuropathy impacts your daily life, I do see your spark of that spirit of endurance that keeps you going every day. And the positive side is that it appears you are in remission. ☺️ May I ask what type of cancer you had? And are you able to take any medications to help with the discomfort of the neuropathy?

Tessie63
I had ovarian cancer. My oncologist worked for six hours to remove the damage it had done along with two other surgeons. It crawled over everything. I had one and half feet taken off the colon and my bladder with all the scrapping they did needed surgery to fix the holes in it. I had to wait a little over one year to get this fixed because of Covid here. The sad thing here though is that I had a cyst on that ovary and my regular doctor and myself
followed it until I saw a gynaecologist who told us both not to worry about it because it would never amount to anything. I wanted the doctor to remove this ovary but she refused and told my doctor not to follow it with the ultra sound tests any more and so this is where I am today. My meds are 2 caps twice a day of Lyrica or pregabalin and 4 caps at bedtime of of nortriptyline.

Tessie63
Thanks for the hugs!

That’s one of those sad stories where your gut says one thing but your gynecologist says another and completely missed the gravity of the situation! I’m so sorry that your cancer wasn’t found sooner to avoid the metastasizing.

It is a positive sign to hear your oncologist was very diligent in making sure there were no remaining areas of cancer, that you only had to followup with 3 chemo treatments and are still in remission. Ovarian cancer isn’t a easy one to beat so I’m really happy for you that you’re still here! I know it’s not the life you’re used to and with the neurology it’s not 100% an easy time, but you ARE here and you have a life, which to me is the ultimate gift. You have more time with family & friends, more time to enjoy beautiful moments in nature, reading, maybe some small artistic activities.

With your walker are you able to get outside to do a little walking around in the sunshine? Does your walker have a seat on it so that you can walk and then rest for a couple minutes?
I needed a walker for awhile when I lost feeling from my waist to my toes due inflammation on my spinal cord. I can sure empathize with you that the walker was a challenge and annoying, but it gave me freedom to still be moving on my own accords…in spite of the silly tennis balls on the legs! 🙃
What are some of the things you do enjoy doing during the day? Are you able to meet with a friend for lunch? Go shopping? Do you have any hobbies?