• Powerofhope's Avatar

    Powerofhope started following

    User: CancerNews

  • Powerofhope's Avatar

    Powerofhope asked a questionNon-Hodgkin Lymphoma (NHL)

    Neuropathy

    4 answers
    • HOBO's Avatar
      HOBO

      Of all the things I have been thru the nerve pain is the worst. It has changed my quality of life. My hands have gotten better but my feet not so much. The more walking I do the more I suffer. Good luck.

      over 6 years ago
    • Gremlin's Avatar
      Gremlin

      I have nerve pain as well. I look kind of like Quasi Moto when I walk. The right foot is worse than the left and both my hands and feet really hate the cold. My doctor prescribed neurotin and it seems to help. It is weird to feel like I have been standing in a snow bank when I am inside and when I am outside, I don't realize how cold my hands and feet are until I come in. However, it seems to be getting better with time.

      over 6 years ago
    • DaveWaz's Avatar
      DaveWaz

      Powerofhope,

      Thank you for your post. I hope all is well. You reminded me of an article we published a few months ago on chemotherapy induced peripheral neuropathy. Perhaps you will find it interesting.

      http://www.whatnext.com/blog/posts/chemotherapy-induced-peripheral-neuropathy-what-why-and-how

      Best wishes,
      David

      over 6 years ago
  • Powerofhope's Avatar

    Powerofhope started following

    Question: Neuropathy

  • Powerofhope's Avatar

    Powerofhope started following

  • Powerofhope's Avatar

    Powerofhope posted an update

    One year ago this week my wife and I were staying at the Hope Lodge provided by the American Cancer Society in Mid-Town Manhattan following 28 days in isolation for my auto transplant. We thought we would be there a day or two, but it ended up being 8 days because my wife had to keep taking me back to Sloan Kettering, which is the reason patients are required to stay close to the hospital. The Hope Lodge was like staying at a luxury resort. The very best thing about our experience there was the people we met though. Every single one of us in the common kitchen on our floor was in a very similar situation. We spent hours sharing experiences with other survivors and their caregivers. We all did our very best to support one another in any way we could. As terrible as I felt physically, it was a truly amazing experience. Many thanks to the great people of the American Cancer Society!

    3 Comments
    • GregP_WN's Avatar
      GregP_WN

      That's great to hear, we have several people on the site that have used the Hope Lodges, they are a nice place to stay and the people are great there. I have visited one but not had to use one. Thanks for sharing your experience with us. Hope you're doing well now.

      over 6 years ago
    • barryboomer's Avatar
      barryboomer

      Never heard of Hope Lodges. Who and How do you get to use them.
      YES...Being with others that are going through a similar problem is a good feeling.
      That's why this group is good. I DON'T have any place here locally to go because I'm not doing the mainstream treatment and all the support groups are doing chemo and radiation and I feel like an outcast. Some people have mocked me in my own circle of friends and family. BUT Others are supportive although the ALL think I'm doing the wrong thing and slightly nuts.
      Oh Well....B

      over 6 years ago
    • GregP_WN's Avatar
      GregP_WN

      Hope Lodge is a facility that is usually nearby a treatment facility. There are 31 scattered around the US. A patient can stay there free of charge with a caregiver while getting treatment for cancer, you must live at least 50 miles away. This is one of the services provided by the American Cancer Society. Here is a link to their page about the Hope Lodges
      http://www.cancer.org/treatment/supportprogramsservices/hopelodge/index?utm_source=FightingbackV4&utm_medium=Email&utm_campaign=Wtr09FB

      over 6 years ago
  • Powerofhope's Avatar

    Powerofhope started following

    User: barryboomer