Need hope: Neuropathy from chemo

@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 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.

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.

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.

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?

Tessie63
Thanks for the hugs!

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.

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
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.

@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.