Need hope: Neuropathy from chemo

Okay, where's the LOVE button?! Christopher Walken 🙂

@tessie63 I meant to comment on your walker named Charlie! That made me giggle. I had named my IV cart Christopher (Walken) because we walked together miles a day in the hospital…thankfully he was on wheels! LOL
Then when I needed a walker for a short while, it was also dubbed Christopher. My chemo nurses at Mayo even printed out a photo of Christopher Walken to tag onto my cart for me so I wasn’t walking down the halls alone. 😀. Then the scary thing was, when my hair started returning I bore a striking resemblance to Chris Walken.
Thought you might enjoy the photos.

I’m so moved by your tender story of love and life with your husband of 54 years. That’s a huge milestone in itself with so many memories of decades spent together. “I am his memory and he is my feet.” This is a beautiful line and reflective of what has made your marriage so successful. It wasn’t always one of ‘memory and walking’, but I’m sure you both always had each other’s back and together ‘made a whole person’ as my husband and I say. ☺️
It’s wonderful that you are living in a setting that works perfectly for both of you. It’s important to feel safe, secure and part of a community. I know you mentioned having a pity party sometimes…go for it! The difference is, you know not to stay too long at that party. 😉
I read a few of your previous posts to see that you’ve gotten introduced to a number of fellow neuropathy members. Sadly, it’s a pretty hot topic in the forum but it lets you know you’re not alone…not that it makes you feel better but sometimes misery loves company. (I really don’t know what that means! My mom always used to say that!

Thank you for asking about my story. In a nutshell, 3 years ago, I was diagnosed with Acute Myeloid Leukemia after being seriously ill for 3 weeks. Many rounds of chemo and a bone marrow transplant at Mayo-Rochester and I’m back to normal…in remission and things look promising! It was an arduous journey but well worth the effort. I’m happy to just be alive every day and I feel it’s my mission to help give hope and encouragement to other members diagnosed with blood cancers and/or facing a bone marrow transplant. ☺️ My husband and I just celebrated our 48th anniversary…we never really know where our life journey will take us but it is very special when it’s spent with someone we love. I wish you and your husband all the best.

@tessie63 I meant to comment on your walker named Charlie! That made me giggle. I had named my IV cart Christopher (Walken) because we walked together miles a day in the hospital…thankfully he was on wheels! LOL
Then when I needed a walker for a short while, it was also dubbed Christopher. My chemo nurses at Mayo even printed out a photo of Christopher Walken to tag onto my cart for me so I wasn’t walking down the halls alone. 😀. Then the scary thing was, when my hair started returning I bore a striking resemblance to Chris Walken.
Thought you might enjoy the photos.

I took Lyrica at first, but it only treats the pain, not the underlying neuropathy. I have some other health issues from Chemo, and drug interactions are a real concern for me. I wanted to get off some of these meds as soon as possible. I don’t have pain anymore from the neuropathy and that’s from the healing of the neuropathy. And while the neuropathy was the most painful of my side affects, my heart and lung issues are more serious. The PQQ is hard to find, as it’s not a common supplement. I found it on Amazon and have it on Subscription. 🤞

@tessie63
I'm going to add that what @loribmt wrote is so very true. I read your positive thoughts about where you live in a condo with lovely neighbors, 54 years with your husband where you are his memory and he is your feet, and giving your walker the name of "Charlie". It saddens me that the doctors dismissed your gut feeling that something was very wrong.

It sounds like you are the full-time caregiver for your husband. What do you enjoy doing that is just for you?

Tessie63
Thank you for replying to my email. I take 200mg. of
Coq10 daily but have not tried PQQ yet so I will give it a try. I also take 250MCG of B12 daily. For the neuropathy l am on Lyrica otherwise known as pregabalin 50MG 2 caps twice daily and Nortriptyline HCL 10 mg. , 4 caps at night. What do you use? My fingers always feel like bumps of little balls on the tops of them. It drives me crazy at times and my feet feel like I have soles on them in bed at night. I have to use the AFOs to walk in. I can’t stand or walk alone without them. It seems like all this just happened to me overnight and I do struggle to adjust to my new life at times.

I developed severe neuropathy in my hands and feet after chemotherapy for breast cancer. I talked to doctors and looked online, but found no clear guidelines for relief. After trying for almost two and a half years with no improvement, I went researching again online. NIH had an article about supplement use, and mentioned studies but did not give clear guidance. But hearing about studies, I went digging again. I found a study by the Cleveland Clinic that got good results with 300 mg of CoQ10 and 20 mg of PQQ daily. I have been using this combination for a year now and things have improved dramatically. My finger tips no longer feel burnt, just a little numb. I cannot tell you the joy I felt when I took off my shoes and felt the floor for the first time. I still have discomfort in my feet, but much improved and no longer hurts to walk. The one symptom that doesn’t feel much better is the feeling of sand between my toes. My doctor had been monitoring my progress and is as pleased as I am. This may not work for everyone, and it’s definitely not an overnight cure, I can only say what it’s done for me. Stick with it, again it’s not a quick fix, but you should start getting relief after a couple of weeks. With Hope. Janet Davis

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.