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(11 posts)

Eyeball Cancer

  • Started 1 year ago by shed22
  • Latest reply from Robindianne

  1. Anybody hear of it? Seriously. Trying to help my dad. If you have advice (real advice!), please share. I am scared. So is my pops, not that he'll admit it. We are looking for clarity. Thank you.

    Posted 1 year ago #         
  2. Oh yeah, they are saying it's squamous cell carcinoma. For the last two years doctors said it was "farmer's eye". They were wrong.

    Posted 1 year ago #         
  3. Shed - Have you found yet whether there is a DEFINITIVE center in the U.S. for treating this kind of cancer? If you have, even if it's not someplace you expect your dad to get treatment, see if they have a patient/caregiver discussion board or forum online. When my mother was diagnosed with pancreatic cancer in 1998, the Johns Hopkins discussion board was my lifeline (and it's still there to date, with software rawer than the one we run on here, yet all that matters is people helping people).

    And in the meantime, find whomever is THE expert around here, if you haven't already. Get second and third opinions if you can and balance them before you make decisions.

    I'm sorry I know nothing specific about this particular kind but when people start getting back to the site later today, maybe somebody will. I wish you strength, and healing for your dad ... TR

    Posted 1 year ago #         
  4. Talaki34
    Member Profile

    Talaki34

    shedd22

    I am very sorry to hear about your Dad.
    I went looking for information on this type of cancer and these sites give some good information.

    http://eyecancerinfo.com/

    http://www.willseye.org/health-library/conjunctival-squamous-cell-carcinoma

    http://health.usnews.com/top-doctors/directory/best-ophthalmologists Top ranked by peers

    http://health.usnews.com/best-hospitals/rankings/ophthalmology List top rated Hospitals/clinics

    Listen to TR. Sound advice. Ask lots of questions. Doctor and patient are a team. Both must have trust in each other, if there is a problem never be afraid to speak up. Take a pocket tape recorder with you when you go to appointments. Speaking with the doctor can be stressful and sometimes we miss or misunderstand important information. Having the conversation recorded allows you to review it latter.

    Many of us have been touched by cancer. The most important thing to remember is you and your Dad are not alone in this battle.

    Posted 1 year ago #         
  5. The Velvet Bulldog
    Member Profile

    shed22: First, I'm sorry your family is experiencing this very scary time.

    I would add Cancer Lifeline to Talaki's excellent list of resources. They're local (near Greenlake) and have a 24-hour hotline as well as their physical building and are incredibly supportive with access to many, many resources. I've been involved with them for years and know how helpful they can be.

    cancerlifeline.org

    Lifeline: Get immediate phone support 24 hours a day on our Lifeline

    Call (800) 255-5505 or (206) 297-2500 (in the Seattle metropolitan area)

    Posted 1 year ago #         
  6. I'm sorry to hear this, something like this can be very scary, gathering the facts and educating yourselves is your best first step. First hand experience speaking.

    Another resource is the National Cancer Information Service. While it is a national service they are located right here in Seattle on the Fred Hutchinson Cancer Research Center campus. They have a lot of great information to share.

    There web site is http://www.cancer.gov/aboutnci/cis/page1

    The phone # is 1-800-4-CANCER.

    Posted 1 year ago #         
  7. Robindianne
    Member Profile

    Robindianne

    So sorry to hear about your dad and hope you are taking care of each other mentally. My ex was diagnosed with eyeball cancer called Choroidal Melanoma about 6 months ago. He's doing very well right now and has a really good prognosis. You can PM me if you want the details. I don't know how cancers are different so not sure this helps you but wishing your dad (and your family) health and healing.

    Posted 1 year ago #         
  8. Robindianne: Unfort. the PM function is no longer so you'll need to leave some contact info. for shed or vice versa.

    Posted 1 year ago #         
  9. shed, sorry bout your dad's cancer.

    if there's one advice I have (besides seeing the docs above) is to get his vit. D3 levels up, taking a high daily dose of supplemental D3, starting now, and asking the doctors immediately to get your dad's blood serum D level tested, so that all of you, including medical staff, is aware of whether his levels are low (probably so, is my guess) and begins working to remediate it.

    Posted 1 year ago #         
  10. Thank you all!! He starts the chemo eye drops next week. Part of our concern comes from not knowing what to expect from the treatment. The doctors told him it would be very painful and there was nothing they could do about it. My mom will be administering the eye drops. I thought that was strange. I appreciate all the support and research from the blog.

    Posted 1 year ago #         
  11. Robindianne
    Member Profile

    Robindianne

    Thanks Jissy.

    Shed, here is the name of the specialist my ex went to for his eye cancer. He had a radiation "plaque" placed on his eye for 5 days to kill it and it looks good now. This was in June.

    Dr. Wilson is an eye cancer specialist http://www.ohsu.edu/xd/health/services/providers/wilsonda.cfm in Portland, OR.

    My email if you want other info or want to connect your dad with my ex (who's a really wonderful person) is robinatteamkonadotcom

    Take good care.

    Posted 1 year ago #         

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