cancer.org changed

cinnamonsmile
cinnamonsmile Member Posts: 1,187 Member
in Breast Cancer #1
I went to cancer.org to find links for the information they provide on cancer in general, and specifically breastcancer. I like some parts, but overall, I don't like how it is set up. I liked it when they had the basic of cancer a part of breast cancer. I don't think it is user friendly.

AND THEY HAVE MADE IT EXTREMELY DIFFICULT TO FIND INFORMATION ON NEUROPATHY FROM SURGERY,CHEMO,AND RADS, POST MASTECTOMY PAIN SYNDROME!!!!

I was totally lost in pain, not knowing it was NOT normal to have the amount of pain I had until I talked with a wonderful lady at the other end of the ACS 1-800 number. I printed out that information. SO many of us have pain after treatments, and I think ACS did a real disservice by either omitting or burying that information. I have not found information describing the symptoms of nerve damage pain (burning,zaps, hypersensitivity, etc), scar tissue adhesions for mastectomies. That information should be provided and easy to find.

I like the how the information is presented at breastcancer.org.

Although, there are some good parts, overall, I think what they changed stinks. There is so much written under headings, I find that trying to find the info I want is buried. New people especially, are usually full of anxiety, stressed out, scatter-brained. Info should be easy to find.

Comments

  • SIROD
    SIROD Member Posts: 2,194 Member
    #2
    Gabapentin
    Have you tried the prescription Gabapentin/Neurotin for your neuropathy pain?

    Doris
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #3
    Hope this alternate helps!
    I have found the site chemocare helpful many, many times. Here is an example on the subject of neuropathy:

    Numbness and Tingling

    http://chemocare.com/chemotherapy/side-effects/numbness-tingling.aspx
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #4
    I have been on gabapentin
    I have been on gabapentin since February 2011. I see a pain clinic specialist. In addition to the 2100 mg of daily gabapentin, I take amitriptilyne, a muscle relaxer, tramadol or vicodin depending on which one is working better.
    I also get lidocaine IV infusions about every nine weeks and I still have incredible amounts of pain from the LE and post mastectomy pain syndrome.
    I know my pain really well, this is what I woke up with on 1/11/11 when I awoke from my BMX with node dissection.
    I have been posting here and there that the pain dr. is telling me the lidocaine will eventually not work and I should start thinking about getting a spinal implant that activates by remote control to "tingle" the nerves that are in my words, wonky, so it confuses the nerves that are already confused in thinking I am in pain. The tingles are supposed to mask the pain.
    I am so on the fence about the spinal thing. I really don't wont anyone messing with my spine and have something else go wrong, but I don't know what I will do as I can already tell the lidocaine is not working as good as 2011.

    I just don't like that any newcomers looking at cancer.org and not come to the discussion boards or chatrooms will not find the info. on different types of pain from cancer treatments whether it be from surgery, hormone therapies, rads, or chemo.
  • SIROD
    SIROD Member Posts: 2,194 Member
    #5
    cinnamonsmile said:

    I have been on gabapentin
    I have been on gabapentin since February 2011. I see a pain clinic specialist. In addition to the 2100 mg of daily gabapentin, I take amitriptilyne, a muscle relaxer, tramadol or vicodin depending on which one is working better.
    I also get lidocaine IV infusions about every nine weeks and I still have incredible amounts of pain from the LE and post mastectomy pain syndrome.
    I know my pain really well, this is what I woke up with on 1/11/11 when I awoke from my BMX with node dissection.
    I have been posting here and there that the pain dr. is telling me the lidocaine will eventually not work and I should start thinking about getting a spinal implant that activates by remote control to "tingle" the nerves that are in my words, wonky, so it confuses the nerves that are already confused in thinking I am in pain. The tingles are supposed to mask the pain.
    I am so on the fence about the spinal thing. I really don't wont anyone messing with my spine and have something else go wrong, but I don't know what I will do as I can already tell the lidocaine is not working as good as 2011.

    I just don't like that any newcomers looking at cancer.org and not come to the discussion boards or chatrooms will not find the info. on different types of pain from cancer treatments whether it be from surgery, hormone therapies, rads, or chemo.

    The Devil You Know...
    Hi again,

    I just past my 18th year since diagnose. I've had lots of surgeries (20), different disease and conditions (10) not including mets. I have 17 prescriptions and 5 over the counter ones, such as folic acid to offset the damage of methotrexate.

    In that time, I have learned that some pain we just learn to live with it. It's no help, I know.

    I just had a flare up of fibromyalgia. This was my fourth bout with it (2005, 2006, 2009 and 2012), I take a muscle relaxer and already take gabapentin. It helps some but when the pain comes, I just go with it and try to relax. I hope it goes away soon and I know it will, then something else with come up to plague me.

    Didn't even take an aspirin before breast cancer. Some are diseases or condition that just came, some like uveitis was because Arimidex gave me 3 vertebra fractures after a minor fall. The remedy I was given a bisphosphonates which in turn gave me uveitis (4 prescriptions for that one). It goes on and on. I learned as I said to just go with it.

    I use to think that there was some solution or medication for everything. I have learned that there really isn't. I've learned to live with the devil I know, it might be a lot better than the devil I don't.

    I know that this isn't giving you much help, but it is what I've learned in the past 18 years. I wish you the best in whatever you decide to do.

    Doris

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