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.]