Need hope: Neuropathy from chemo

Thank you for reading my story and your understanding reply. I have a top grade walker and I’ve named him Charlie. I do get out with it thanks to my daughter. She lives not far from me and takes me shopping now and then. I also live in a lovely condo which I bought after my husband had a stroke. I knew it was time to move. The stroke affected his memory and now he has dementia. We’re doing fine though. I am his memory and he is my feet. It was our 54th wedding anniversary on the 29th of June. He had no memory of it so we enjoyed looking at our pictures together and me talking about them. As long as I can care for him I will. We both love living here and the people here are beautiful, kind souls. All in all I have a great life. I would just like to know if there are others out there with my feet issues and what they have done differently to improve things.
What is your story now? I would love to hear about you
and how you are doing now.

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.

I am HERE for your walker named Charlie and the above-mentioned 'pity party'! 🙂 Thank you for sharing your story with us. I think it is a beautiful example of what a post-cancer life looks like: pity, despair, crying, laughing, feeling grateful and then feeling angry. All of the feelings, all of the time, or seemingly 'out of the blue.' As for your feet issues, I think other recommendations made here are worth looking into. I'm not able to offer much since my neuropathies are mostly in my toes and they are slowly (SLOWLY) becoming less irritable. 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.

@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?

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
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 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. 🤞

Thank you for replying to my email. Actually, my family doctor did not know that the cyst I had on my ovary had developed into a full grown tumour until I went to see her about my symptoms. She was devastated to find out what had happened and actually blamed herself. She had phoned the gynocologist I saw to ask her if we need to follow this every year with ultrasounds and she said it was too small to amount to anything and that was in 2014 and here we are today. The moral of this story is any size cyst on any organ should always be followed!
I watch a lot of sports on TV. I love baseball and our hometown football team and I have these word games on my I pad that I do every day. I find myself losing so many words now so this helps me with that. Please share your story with me sometime. It helps to know I am not the only one out there that was damaged by chemo.
Hope to hear from you again.
Carol

Thanks for the info. All the best to you
Carol