PCNSL Resources:

"Better" PCNSL treatment centers

I present this list for two reasons:
1: The hospital I was diagnosed at wasn't able to provide treatment and I was transferred to a different center that I will never step foot in again. Had I not been so scared and confused I would have sought out a second opinion. Most insurance plans will cover a second opinion visit. I have had members of my online group whose PCP thought that treatment was as easy as reading a chemo recipe.

2. 1If you have been ACCUURATLY diagnosed with PCNSL you might contact one of the following for your treatment.

Are worried that you might no be getting the appropriate treatment seek a second opinion. This is your life and you need to be your best advocate! DO NOT be afraid to ask your doctor questions and DO NOT be afraid to seek a second opinion from another doctor that might be better qualified to provide you with better information!

This list started out as 41 the top rated cancers from both the National Cancer Institute and US News & World Report. I called EVERY one of them to inquire if they had a nero-oncology department. If they did, I contacted the department to ask if they offered treatment for PCNSL. The 16 centers listed below stated that they were familiar with treating PCNSL!

University of California, Los Angeles (31 I0) 825-5321 http://www.cancer.ucla.edu/ 
University of Southern California (323) 865-3000 http://uscnorriscancer.usc.edu/ 
University of California, Irvine (714) 456-7890 http://www.cancer.uci.edu/ 
University of California, San Francisco (415) 353-2241 http://cancer.ucsf.edu/ 
University of Colorado (720) 848-0000 http://www.uccc.info/for-healthcare-professional/cancer-center/index.aspx 
Georgetown University Medical Center (202) 444-4000 http://lombardi.georgetown.edu/ 
Johns Hopkins University (410) 955-5000 http://www.hopkinskimmelcancercenter.org/
University of Michigan (800) 865-1125 http://www.cancer.med.umich.edu/concentrate/brain/the_clinic.sht ml 
Memorial Sloan Kettering (212) 639-2000 http://www.mskcc.org/masc/html/289.cfm 
University of North Carolina (919) 966-7012 http://www.unclineberger.org/patient/programs/neuro-oncology.asp 
Duke University (888) 275-3853 http://www.dukehealth.org/services/br ain_tumor/about 
Wake Forest university (336) 716-2011 http://www.wakehealth.edu/Comprehensive-Cancer-Center/
Case Western Reserve University (216) 844-8797 http://cancer.case.edu/ 
Ohio State University (800) 293-5066 http://cancer.osu.edu/redirect/Pages/index.aspx 
University of Texas (713) 792-2121 http://www.mdanderson.org/ '
University of Virginia (434) 243-6784 http://www.healthsystem.virginia.edu/internet/cancer/ 

Better PCNSL Nero Oncologist's (alphabetical by last name)

Dr. Tracy Bachelor, MD - Massachusetts General Hospital (617)724-8770
Dr. Dr. Lisa M Deangelis MD. - Memorial Sloan Kettering hospital (866)886-9807
Dr. Howard A. Fine, M.D. - NYU Langone Medical Center (212) 263-3551

Dr. Brian P. O'Neill, M.D. - Mayo Clinic (50)538-3270
Dr. James L. Ruben stein, MD, Of Cal San Fran (415) 353-2421
Dr. David Schiff, MD. - University of Virginia (434) 982-4415

 

A wealth of extremely useful cancer resources can be found at the National Coalition for Cancer Survivorship
at: http://www.canceradvocacy.org/shop/cancer-survival-toolbox-eng/ While the “toolbox’s “ dose not specifically address the  PCNSL  patient/survivor it is still extremely valuable  for EVERYBODY dealing with ANY cancer!

The Cancer Survival Toolbox: Living With Non-Hodgkin Lymphoma

Living With Non-Hodgkin Lymphoma is an audio program of the Cancer Survival Toolbox , written by cancer survivors and healthcare professionals, and offers non-Hodgkin lymphoma diagnosis and basic treatment options, side effects and symptom management, coping with change, and information for caregivers.

The Cancer Survival Toolbox: Living with Blood and Marrow Transplant

The goal of this program is to provide you as a person diagnosed with blood cancer--as well as your caregivers, family, and friends--with practical tools you can use in your daily life as you deal with issues surrounding transplants as a treatment. Living with Blood and Marrow Transplant, which was written by cancer survivors and healthcare professionals, can be helpful to individuals before, during and after transplant treatment. © 201

Self-Advocacy: A Cancer Survivor's Handbook

NCCS believes that cancer becomes a much lesser foe when faced by informed and knowledgeable health care consumers who know how to communicate their needs to those who can be helpful to them as they experience cancer. This handbook focuses on self-training steps and tools to assist and empower individuals dealing with cancer.

Self-Advocacy: A Cancer Survivor's Handbook

NCCS believes that cancer becomes a much lesser foe when faced by informed and knowledgeable health care consumers who know how to communicate their needs to those who can be helpful to them as they experience cancer. This handbook focuses on self-training steps and tools to assist and empower individuals dealing with cancer.

Teamwork: The Cancer Patient's Guide To Talking With Your Doctor

Developed by cancer survivors and health care professionals, this book addresses the need for good communication and provides a list of sound, practical questions that patients can use when talking with their doctor.

What Cancer Survivors Need to Know About Health Insurance

This book sorts through the insurance maze by explaining the many types of insurance and exploring ways cancer survivors can get the most out of their insurance coverage. The booklet also helps cancer survivors understand the new rights and coverage changes they already enjoy, as well as the rights and responsibilities they will encounter under the new health care law

Working It Out: Your Employment Rights As A Cancer Survivor

Unfortunately, many cancer survivors experience workplace discrimination. In fact, one survey found that American workers with cancer are fired or laid off five times as often as other workers. This book addresses the employment challenges that many survivors face and offers advice and resources to address those challenges

You Have The Right To Be Hopeful

Hope is essential for a cancer survivor to achieve personal satisfaction with his or her quality of life. This book defines the many ways that hope can be present in a survivor's life and offers a place for survivors to chronicle and reflect on their cancer journey

The Cancer Survival Toolbox: Dying Well - The Final Stage of Survivorship

Although death is an inevitable part of life, few of us know just what to do or say or how to find the support we need when we are nearing the end of our lives and saying our final goodbyes. Dying Well--The Final Stage of Survivorship is an informative, supportive, and reassuring program designed to teach you more about your choices and resources and what to expect during this last stage of survival.

 

Pillars4Life An excellent generalized cancer resource to help you through your journey!

Pillars4Life is dedicated to improving the quality-of-life of cancer patients and of their families by making critically necessary, highly effective, evidence-based psychosocial care, affordable and accessible to everyone. Covering the "Seven pillars of personal recovery"

1 Hope - I am discovering hope in my life.

2 Balance- I am taking my life back from cancer.

3 Inner Strength - I recognize the power within me.

4 Self care - I am doing all I can to help myself be well,

5 Support - I am giving and receiving the support I need.

6 Spirit - I am connecting to a source of inner peace.

7 Life review - I am living fully in this journey through life and beyond.

 

 

Online Brain Tumor Support (very little offered specifically for the PCNSL community).

The American Brain Tumor Association: http://www.abta.org -- an excellent list of financial resources and more.

The National Brain Tumor Society: http://www.braintumor.org

I run what I believe is the only online peer-to-peer support group in the world for the PCNL community at the braintrust.org http://list.braintrust.org/mailman/listinfo/cnslymphoma_list.braintrust.org

Reference links:

From the Journal of Clinical Oncology - Primary Central Nervous System Lymphoma: A Curable Brain Tumor at http://jco.ascopubs.org/content/21/24/4471.full

National Cancer Institute:
Primary CNS Lymphoma Treatment (PDQ®) - http://www.cancer.gov/cancertopics/pdq/treatment/primary-CNS-lymphoma/Patient/page4/AllPages\

Article in The Oncologist May 2009 vol. 14
Primary CNS Lymphoma in Immunocompetent Patients
This is an extremely comprehensive and informative article!
http://theoncologist.alphamedpress.org/content/14/5/526.full#sec-12

WebMD: http://www.webmd.com/search/se arch_results/default.aspx?query=Primary%20Ventral%20Nervous%20System%20Lymphoma&sourceType=undefined

American Uveitis Society: http://www.uveitissociety.org/pages/diseases/pcnsl.html

The NHL Cyberfamily at http://www.nhlcyberfamily.org/index.htm and their Yahoo group @ http://health.groups.yahoo.com/group/nhl/

British article "CNS Lymphoma Explained"

For those recently diagnosed and new to CNS lymphoma I'd like to suggest the following

1. Color Me Hope A Resource Guide for People Affected by Brain Tumors. A GREAT first read! It's a PDF you can save for reference or print.

2. The National Coalition For Cancer Survivorship offers a wealth of
The Cancer Survival Toolbox is a free, award-winning audio program developed by leading cancer organizations to help people develop important skills to meet the challenges of their illness.

3. The Official Patient's Source book On Primary CNS Lymphoma: A Revised And Updated Directory For The Internet Age (rather dated but worth a look)

3. 100 Q&A About Brain Tumors by Virginia Stark-Vance

4, The Total Cancer Wellness Guide - Reclaiming your life after diagnosis

5. I Will Not Die an Un lived Life by Dawn Mark ova

6. When Bad Things Happen to Good People by Harold S. Usher

7.The National Cancer Institutes catalog of patient help brochures.

8. You night want to look into a free subscription to Neurology Now magazine from the the American Academy of Neurology.

You may also want to connect with:
1. The American Cancer Society at http://www.cancer.org -- Provides a wide range of support to cancer patients.
2. The Leukemia & Lymphoma Society at http://www.lls.org -- Provides limited PCNSL information but offers Co-Pay assistance.
3. The Patient Advocate Foundation at http://www.patientadvocate.org -- Provides patients with mediation and negotiation to settle issues with access to care.
4. The wellness community at http://www.thewellnesscommunity.org -- Provides free emotional support, education and hope to the cancer community
5. Cancer Care http://www.cancercare.org -- Provides free, professional support services to anyone affected by cancer.
6. Joe's House http://www.joeshouse.org -- Partnered with several lodging chains for patients and family members that must travel long distances for treatments.
7 Planet Cancer http://www.planetcancer.org -- A tremendous resource for “young adults” (between 15 and 39) who are facing the challenges of cancer.

Free Periodicals

Cure combining science and humanly ..............................................http://www.curetoday.com/

 

IMPROVING YOUR BRAIN FUNCTION See "Cognitive issues" on the main navigation button to your left

Miscellaneous fun links:

You can find a wide range of cancer awareness apparel, wristbands, jewelry, and gifts for patients, survivors, and caregivers at http://www. chose hope.com/

a HEYuge selection of brain tumor shirts and others http://shop.cafepress.com/brain-tumor-awareness

Inspiration:

Inspirational words: Quotes, Prose The gift (of cancer), I asked GOD, What cancer can not do, The Invitation,

Inspirational mi sic from David M. Bailey

Wikipedia:
David M. Bailey was the son of Presbyterian missionaries and was raised in Beirut, Lebanon. He spent some of his youth in Germany, where he learned to play the guitar, played in some bands, and began writing songs. Upon returning to the United States, he attended Grove City College; he then got married and entered corporate America. He soon was diagnosed with a glioblastoma brain tumor that was to have killed him in six months. He quit his job and decided to tour and write songs as long as he could. He toured and performed for a few years in the duo Not By Chance along with bassist Douglas Ebert. In 1997, the group dissolved and Bailey toured without accompaniment. In 2003, he was one of half a dozen winners at the Kerrville New Folk Competition at the Kerrville Folk Festival. In late 2008, Bailey was diagnosed with a recurrence of glioblastoma. On November 20, 2008, Bailey had surgery to remove a cyst and new tumor. His trials with the initial occurrence of glioblastoma, and the initial recurrence in 2008, were discussed in Sanjay Gupta's book Cheating Death. On October 2, 2010, Bailey died from complications due to the cancer.

David Bailey was an active member of The American Brain Tumor Association (ABTA), The Florida Brain Tumor Association (FBTA), and the Braintrust (braintrust.org) and was a guidepost to the BT community. I've seen him perform on several occasions and met with him a few times when our paths crossed. I found his music and words incredibly inspirational. Here are a few samples:

The Florida Brain Tumor Association Honors David M. Bailey You Tube
David's "When" (poem) You Tube - David's “what” (poem) You Tube
David sings “Message of Hope” You Tube “One More Day” You Tube

You can find all of his albums and DVD's at http://www.davidmbailey.com.

Sites for on the benefits of Cancer Humor: (Laughter is the BEST medicine!)
The American Cancer Society recognizes "humor therapy" as a complementary method to promote health and cope with illness.

The "Cancer Treatment Centers od America" comments http://www.cancercenter.com/complementary-alternative-medicine/laughter-therapy.cfm

A fox news report: http://www.foxnews.com/story/0,2933,458625,00.html

Sites for cancer humor

http://www.cancerisnotfunny.com

The Learning Place. at http://www.learningplaceonline.com/illness/humor/jokes-intro.htm

Planet Cancer’s hilariously funny “TOP 10” lists.

Barry having fun with his own cancerxmas crabby

abeheadThe picture to the left was taken two weeks after my whole brain radiation left a tuft of hair on the back of my neck. I asked my sister to draw Abe Lincoln on the back of my head and use that tuft of hair for a beard on Abe Lincoln's’s face. We used plastic googly eyes for added effect. I was a hit at the mall!

To the right is my "Chemo Crabby” hat that I wear to some of my infusions sessions. Not only does it lighten staff members’ day but often gets a grin from the fellow patients. This was my extra special "Xmas Crabby" during my autologous stem cell transplant December 2012

You should also view my "in your face" brain tumor awareness T-shirt.

Some people choose to be bitter about their diagnosis and their journeys are filled with anger and stress. I chose to accept my diagnosis and do my best to diminish my angst. Making fun of my disease reduced its power to ruin my day with fright and anger.