Links to some other sites and blogs on Primary CNS Lymphoma (PCNSL)

There’s a lot of medical information out there.  I wanted to compile a list of stories from actual human beings.

    • A PCNSL Facebook page, with comments from survivors.
    • Brenda Snyder’s Family Story.  Ms. Snyder recently passed.  I am grateful to her daughter for having shared her story.
    • Easing Off the Bridge,” by a PCNSL survivor.
    • Barry Gates, a four-time PCNSL survivor, has started a wonderful site with info about PCNSL.
    • Mr. Gates also maintains an e-mail list for PCNSL survivors and caregivers which I absolutely recommend that you join if you are either a survivor or caregiver.  The list presently has 71 people.
    • Lymphomartini by a late cancer warrior whose lymphoma had spread to his CNS.
    • My Family’s Experience with CNS Lymphoma,” a tribute by a son to a father who passed too early.
    • On this forum thread, Fins1970 describes his/her father’s journey and passing.
    • Mrs. Margaret Mary Anderson, in the comments below, has kindly provided a link to her late husband Joe’s CaringBridge page, in hopes that someone will benefit from knowing about the treatment that he underwent.
    • Geoff Hom’s blog.  His mom has PCNSL.  Mr. Hom is approaching his mom’s treatment with a scientific mindset.  Let’s all send her good wishes.
    • Blog entry by a nurse who had PCNSL.  She noted the delay in getting appointments with specialists at major cancer centers.
    • Public Figures who have had PCNSL
      • The late Mayor Bob O’Connor‘s medical team posted information as detailed as how many meals he was eating during his high-dose methotrexate treatment and where his liver enzymes were. Mayor O’Connor had a rare type of anaplastic T-cell CNS lymphoma. You can find a lot more via Googling. He survived two months.
      • Professional ice hockey player John Spoltore also passed of PCNSL at the age of 38. He survived seven weeks.
      • NASCAR driver Richard Petty’s wife Lynda Petty recently passed of PCNSL. She survived five years, until the age of 72, and had many grandchildren.

Here is a link to a CNN iReport from someone whose husband had PCNSL thirty years ago. Back then it was called “microglioma.”

If only Googling could actually help my father. We are in the hands of the oncologist now.

[Updated:  My father passed in 2014.  I hope this page helps someone else.]


5 thoughts on “Links to some other sites and blogs on Primary CNS Lymphoma (PCNSL)

  1. Margaret Mary Anderson July 30, 2014 / 6:19 pm

    I am happy to share the CaringBridge journal I kept on my husband’s fight with CNS lymphoma. Sadly he passed away in February 2014. But he went through lots of treatment and perhaps it would help someone out there to see what his therapy was. It is a devastating diagnosis with not too many people out there able to talk about it. I often felt like I knoew more about it than our doctors did!

  2. sunrainlilies July 30, 2014 / 6:56 pm

    Dear Mrs. Anderson,

    Thank you so much for sharing the link to your CaringBridge site. Feb. 2014, when your husband passed, was when my father’s battle with CNS lymphoma first began. I am very sorry about your husband, though glad to have “met” you.

    I still have not made a CaringBridge account, but will when as soon as I get the chance and I will also add your link to the links above. Speaking for myself, every single story of treatment helps because there is just so little out there. Like you, I have the same feeling of being more informed than the doctors, which is somewhat of a scary place to be.

    Thank you for finding me and reaching out, despite the fact that it must bring back difficult memories. Much love to you, and yours.

  3. williammarkharris May 17, 2016 / 3:16 pm

    been searching pcnsl and come across Barry site , so sorry to hear that he’s passed away x

    • sunrainlilies May 17, 2016 / 4:57 pm

      As far as I know, Barry is alive and well! I saw e-mail from him five days ago, via the PCNSL list.

      My dad, however, died in 2014.

  4. William harris May 18, 2016 / 11:06 am

    So sorry , my wife’s been treated for it a moment it’s horrible as you now take care x

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