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Living with a Brain Tumor

AIR DATE: Monday, May 26th 2008

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Do you know someone who was diagnosed with brain cancer?

Hearing the news of Senator Ted Kennedy's diagnosis with a brain tumor brought tears to my eyes. Two friends of mine have been diagnosed with similar tumors. One was sixty-something, the other 30-something. Both were diagnosed after experiencing dizziness, confusion, and some sort of seizure. In one case these symptoms went misdiagnosed for months. In the other, the cancer was diagnosed immediately. Both friends were told they had less than a year to live. The sixty-something man bucked the trend and lived a happy life for about four years. The other didn?t make the year.

According to the Oregon State Cancer Registry, 270 people were diagnosed with brain cancer here in 2005 (the last year that data is available), and 231 died from the disease that same year.

But at Oregon Health & Science University researchers are working hard to beat those odds. And the lengthening survival rates of patients proves that hope just might be around the corner.

When we hear about brain tumors in the news you imagine the horror of the diagnosis and the fear that it puts in people's lives. You likely imagine surgery, and radiation and chemotherapy. But what about all the other things that can accompany the diagnosis? Depression ? personality changes? seizure management? loss of your drivers license? navigating the healthcare system? paying insurance bills? and finding the best treatment available. How do people do it all?

Have you, or someone you love, lived with cancer ? specifically a brain tumor? How did it change your life? How did the person find the best care? How do you continue life when living with a brain tumor?

GUESTS:

Cleora Wilson: 76 year old woman from Salem who was diagnosed with malignant glioma in May 2006

Edward Neuwelt: A neuro-oncologist who is the director of the Blood Brain Barrier Program at Oregon Health & Science University. He is Cleora Wilson?s physician.

Marty Wilson: Cleora Wilson's son. He sent an e-mail to Ted Kennedy about his mother's condition to encourage the senator to have hope, based on his mother's progress.

Tagged as: cancer · medicine · ohsu · ted kennedy

I was diagnosed with a brain tumor in January 1991 in Klamath Falls(melanoma). The tumor was removed and I received radiation treatments. Another tumor was extracted on the cheek and then the whole brain was radiated as well as the cheek. In 1992, I began experimental vaccine treatments at the John Wayne Cancer Institute. I worked until 1997 when I sold my business and went on total disability. One surgery left me blind on one side and unable to drive. I have had CAT and PET scans as well as many MRI's, some for Dr Neuwel. I am currently a patient of Dr Ferguson at OHSU and am trying different seizure medications. The standard given for brain surgery, Dilantin, is what I have been taking and I am trying to change as it has long term side effects and also is no longer as effective. Headaches and vomiting are the symptoms which led me to a hospital for diagnosis. Seizures and side effects from drugs and surgery are part of my everyday. But it has been 17 years. Bill Turnock(dictated)

BillTurnock — Sun May 25th 10:30p.m.

Hello Bill, As I mentioned in my too long post, Dr O'Neill is wonderful. I also scoured the country for brain tumor treatment centers and came up with UCSF and, also, Mass General as being tops (also Seattle's Fred Hutchison Cancer Center).

Their is a first in the US (I think) proton treatment center being finished at the University of Pennsylvania Medical Center in Philadelphia. I called them yesterday and learned that they are ahead of schedule and may open this fall. If you are interested, their URL is:

http://pennhealth.com/perelman/proton/construction/cyclotron.html


I will include you and your family in my prayers. Ring On. fred

Jean-Paul — Mon May 26th 3:10p.m.

Your blog article is very intersting and fanstic,at the same time the blog theme is unique and perfect,great job.To your success.

http://foodstuff.webs.com/

helpgodme — Mon Nov. 8th 5:22p.m.

My name is Signe Brunner. I was diagnosed with a Oligodendroglioma brain tumor at the age of 41 in 1995. Initially it was recommended that I either be treated with radiation or chemotherapy. In a state of shock it is difficult to make decisions. And yet, there was one doctor who told my husband and me about Dr. Neuwelt and the BBBD program at OHSU. The information led to our meeting Dr. Neuwelt and progressing onto going through the BBBD treatment.
It is now 2008, I am still doing very well. I work as a counselor in private practice, have spent some years in remission, but the fact of the matter is that I have been stable, cognitively able to be focused and thanks to Dr. Neuwelt and his medical team, and to God I am living well.

Signe Brunner — Mon May 26th 11:28a.m.

Hi, Signe.

My 25 year old son was diagnosed with an anaplastic oligodendroglioma brain tumor in May. What grade was your tumor given? David's is a 3.

We also are being seen by Dr. Neuwelt. We consider him to be an expert in the treatment of brain tumors, but I have to say that he has been so hard to have as a physician. He didn't give us any hope. Not one shred. I begged him to tell me if anyone had ever gone longer than 3 to 5 years, and he wasn't able to tell us of any with anaplastic oligodendrogliomas that had beaten the odds. I believe that the doctors look at statistics and at case histories, and then they give us their OPINION, based on their interpretation of facts. But  we are praying for a miracle for David. He turned 26 in July...

Thank you for your encouraging post. God bless you!Cindy

cindysue — Thu Oct. 15th 11:58p.m.

Hello Ms Brunner, I am personally glad for you and will include you in my prayers for those with brain tumors (a growing 'subset' of people). Warm Regards, Fred (Jean-Paul is my 'nom de blog'.

Jean-Paul — Mon May 26th 3:21p.m.

Hi Signe, I meant to include link to an very fantastic, firt of its kind in the US, promising treatment center in Philadelphia, which is ahead of schedule ( I called yesterday and expected opening is this fall!). fred

http://www.pennhealth.com/perelman/proton/

Jean-Paul — Mon May 26th 3:35p.m.

sorry for the typos :)

Jean-Paul — Mon May 26th 3:38p.m.

Hi signe. I hope you get this message. My husband has an Oligodendroglioma also. Was diagnosed in April 06. would love to hear from you to see how you are doing. It is nice and encouraging to see your story.

edswife — Thu Dec. 4th 1:51a.m.

The news of Senator Kennedy as agitated me these last few weeks. I wish him well. I believe any course of action has to be believed by the person who is afflicted, but there are also many alternatives unbeknownst to other brain tumor patients with lower-grade tumors that I?d like to share.

I was first diagnosed with an oligodendroglioma stage 2 (a glioma) in November 2003, and had two surgeries. The first was a biopsy and the second resulted in perhaps 90% removal. I had also started with a naturopath, and then have since been working with a brain tumor nutritionist whose research is extremely thorough, an acupuncturist and another student of his who is also a Native American healer, and a chiropractor. I believe these practitioners have helped prevent any more growth. My husband also said that food is like mainlining, so the diet prescribed by all has also helped enormously.

I am lucky to be living Oregon where access to the alternative community is widespread, and I?m also lucky to have the resources and education to assist me. Not very many people have this, and it?s unfortunate the conventional healthcare industry and insurance companies do not do enough to help people with significant alternative care for any disease.

Mary Logan — Mon May 26th 12:12p.m.

Hi Mary, Oregon is a jewel. My prayers are with you and your family. We can survive, in spite of all odds. fb

Jean-Paul — Mon May 26th 4:31p.m.

I would love to correspond with you about your treatment. My husband has been fighting his Oligodendroglioma stage 3 for almost 3 years now. You are the first person I have been able to find that has the same tumor and is attacking it the "all natural way" as they call it. If you get this message please respond back. thanks

edswife — Thu Dec. 4th 1:55a.m.

My mother was diagnosed with glioblastoma multiforme, the most lethal form of brain cancer, in October 2006. She, my sister and I were given no information on what to expect, other than that her expected survival would be 12-18 months. My sister and I felt incredibly frustrated throughout her treatment. It seemed that her doctors looked at her as an elderly woman (she was only 68 when diagnosed) with a serious form of cancer, and so they weren't interested in treating her aggressively. She received the standard treatment of resection, radiation and Temodar chemotherapy, and was actively discouraged by her medical team from going to a major brain cancer treatment center to receive care. Her oncologists knew very little about GBM, I had to be very aggressive with them for her to receive even basic care, such as regular MRIs. Her main oncologist kept telling her that she was "doing great" even as she became increasingly confused, immobile, and unable to care for herself at all. My sister and I understand that GBM is very serious, but we are quite bitter with the level of treatment she received. She passed away 15 months after diagnosis.

bnelson — Mon May 26th 12:18p.m.

My wife was diagnosed with glioblastoma in March of 2002, and lived nearly 4 and one half years. We worked to live life as fully as treatment and disease would allow. Friends and their support were a key. Friends want to support, but may not know how or when, so it was part of my role to keep them involved, which they did wonderfully. Support for the caregiver is important. There are lots of tools, communication and otherwise that can be used. Lifts, car chairs that turn and lower to get in and out. Caringbridge.org is a way to let people know what is going on where you can say what needs to be said, and they can check in as often as they want. Musella Foundation sponsors a "virtual trial" and keeps track of all the latest trials, etc. There are email lists that allow people all over the world to share their concerns, questions, frustrations, grief, support, hopes, victories,etc.

jamesd00 — Mon May 26th 1:01p.m.

I would like to highly recommend a book and website by a friend and colleague, Ben A. Williams, who was diagnosed with glioblastoma 13 years ago and is still alive, well, incredibly smart, and a professor at UC San Diego. When he was diagnosed he started to thoroughly search the literature on brain cancer and he designed his own treatment. He has made this issue a personal quest, and he put together the information he learned in a book, "Surviving 'Terminal' Cancer: Clinical Trials, Drug Cocktails, and Other Treatment Your Oncologist Won't Tell You About". He also has posted a summary of information on the web at http://virtualtrials.com/pdf/williams2006.pdf.

neuringe — Mon May 26th 1:03p.m.

My post of Ben William's website on glioma didn't work, so I'll try to list it again, and attach it. The url is http://virtualtrials.com/pdf/williams2006.pdf

neuringe — Mon May 26th 1:07p.m.

I'm a 65 year old former CPA who teaches at PCC. I was diagnosed with early stage prostate cancer almost 5 months ago. I spent a couple of months learning everything I could, talking to doctors, and attending two support groups. It was pretty depressing. I felt trapped and very discouraged. I felt like I had this alien in my body that was running the show. It was very discouraging. A friend suggested I check into alternative approaches, and I did. I found a wonderful new world out there -- a world which I have embraced entirely. I am convinced that I am banishing my little problem in my prostate at this very moment, and that I will end up appreciably healthier than when I started. I am following Bill Henderson's book [u]Cancer-Free, Your Guide to Gentle, Non-toxic Healing (Second Edition)[/u]. Bill's a 75 year old retired Air Force Colonel who lost his life-long wife to cancer back in the 1990s after an increasingly miserable four year battle following conventional wisdom. Bill's website is www.Beating-Cancer-Gently.com You can also read informative reader reviews of Bill's book on www.Amazon.com. Many blessings to each of you.

Trimtab — Mon May 26th 1:08p.m.

My husband was diagnosed with Gliblastoma multiforme on Memorial Day in 2006 in Vancouver, WA. He was treated at SW Washington Medical Center. We were given no hope. He is still here and living strong. We have created a website for those who are given the same diagnosis and feel no hope and have anxiety over upcoming treatments. We didn't want others to have to feel the same hopelessnes that we did. He has retired from his job as a physical therapist and is enjoying life. Here's our site: http://glioblastomamultiforme.googlepages.com/gbm

waterfallseeker — Mon May 26th 1:13p.m.

Good Morning,

This is going to be a rather long post, but, may, hopefully be helpful to others who find themselves with the absolutely terrifying diagnosis of a brain tumor & for their significant others.

I had sharp headaches, beginning in November, 2000. As I have severe degenerative arthritis in my cervical spine, I thought it was cause and had an MRI. The radiologist who interpreted my scan, noted the arthritis, but called attention to a large dark area in my left cerebral area and suggested another MRI, this time of my brain 'with & without' contrast. This scan showed a tumor of the meninges surrounding my left cerebellum which was approximately the size and shape of a large lemon.

I went to a Neurosurgeon at Legacy Good Samaritan Hospital (GSH) with a good reputation, who, nonchalantly, told me that the tumor in my brain had metastasized from somewhere else in my body and that he could do brain surgery that week. Quite naturally I freaked. I called Epic Imaging in Tigard that afternoon for a total body CT scan to look for the ?somewhere else? and went there the same day. Well, my body scan was wonderfully free of any tumors!

At that point, I fired ?Dr R.? (I would like to provide his name for people to avoid like a hornet, but I don?t know the libel laws. The first initial of his last name should be sufficient). Having worked for years at Legacy Health System?s two downtown hospitals, I asked my co-workers what they knew about local neurosurgeons. I chose Dr Oisin R. O?Neill, MD, F.R.C.S.I. (he deserves his ?initials?, which stands for ?Fellow of the Royal College of Surgeons of Ireland?) who is a surgeon with Microneuosurgical Consultants, P.C., practicing at Legacy and the Sisters of Providence medical centers. He is a kind person with a wonderful sense of humor and a superbly skilled surgeon ? what more could one want!

He is an amazing person. Many surgeons are known for being ?cold fishes? ? Dr O?Neill was my miracle ? a red-headed, friendly, empathetic person, absolutely dedicated to his patients. He looked at the MRI scan, asked for other views, found them not done and commented &(*&)(, ordering another scan done at Legacy Emanuel Hospital (LEH) to his specifications and scheduled another office visit.

During my next office visit with Dr. O?Neill, he went over the scan ?photo?s and the Radiologist?s interpretation with me. He told me that I had two choices: 1) do nothing, get my affairs in order, expect death from the tumor growing and closing the ?fourth ventricle? in my brain; 2) Schedule surgery. He was wonderful for me. He told me that if I chose option #2, he would treat me like his brother.

I chose surgery and he immediately started me on large doses of steroids (be warned: a horrible experience, think a thousand cups of coffee at once) to stop the tumor growth while he got the surgical team and operatory that he wanted. He also ordered additional MRI views and scheduled me to have ?Intervention Therapy? at OSHU by Dr. Stanley Barnwell, MD ? an angiography of the brain, both mapping the blood vessels and injecting plastic ?micro-beads? into the blood supply of the tumor, to start killing it. This was terrifying in and of itself ? the consent form listed a number of possible bad outcomes and death stood out as the preferred bad outcome for me.

On February 6th, 2001, I was admitted to the Interventional Radiology unit at OHSU. The procedure went great. Dr Barnwell, assisted by Dr Todd A. Keuther, MD (also a surgeon with Microneurosurgical Consultants) treated me and treated me with kindness and understanding. After that procedure, I was admitted to OHSU?s Surgical ICU for the night and was then transferred by an ?ICU ambulance? to the LEH Trauma ICU to await surgery the next morning.

I guess I shall cut to the chase: Dr O?Neill, the surgical team that he had assembled, the nurses and many other staff members, along with my prayers and those of an amazing group of people, saved my life. After 7hrs of surgery, and only three days of recovery (I wanted my brother, my cat, my home, my own toilet, bed, and refrigerator!) I walked out of Emanuel.

A postscript:

Inspite of regular brain scans, a second tumor took off (the first was a slow growing cell line ? both were ?benign? which is very good, but their location & size was the show stopper) and was the size of a lime when discovered.

January 5, 2007 ? d�j� vu. This time, my surgery was done at Good Sam and to my surprise, the recovery wasn?t so easy, the post-op pain not controlled as well as at Emanuel (bless my AM ICU nurse, who advocated for my pain control!), I became an acute diabetic due to IV steroids (a necessary adjunct for my survival) and stayed a bit longer ? 5 days. Still, Iexperienced a miracle facilitated by Dr O?Neill, Dr Keuther, and all the staff at Good Sam who helped me survive. With some practice, I regained my balance and speech (still working on not sounding like a drunk).

I have had two regimens of ?Shaped Beam Radiosurgery? using the Novalis at Emanuel, under the superb care of Dr. Russ T.K. Omizo, MD and the entire staff at the Legacy Radiation Oncology Center. My last three scans show a small residual ?enhanced? area which is stable since my 2007 tumor resection. I will have 3-4 MRI brain scans a year for sometime to come. I am very grateful for the people of Oregon creating the ?Oregon Medical Insurance Pool?, which has hefty premiums, but fully covers me, after a relatively low ?out of pocket? cost. I was able to bridge my COBRA coverage to OMIP.

The purpose of all this verbiage is to convey HOPE to others in a similar situation.

Peace,
fb

Jean-Paul — Mon May 26th 1:55p.m.

I'm 43 years old a healthy, athletic man. I was diagnosed with a level 4 glioblastoma multiforme. One thing I have to mention is that my wife and I had met with a number of Oncologists and we ended up meeting with who we refer to as the Dr. of death. Dr Edward Neuwelt gave me a prognosis of 2-3 years and stated that he was probably being overly optimistic by saying 3. He continued to elaborate that he can count the number of patients that have survived past 5 years. The entire time he gave us this prognosis he had a smile on his face. He gave us no hope of any kind that we would be able to beat this. We were referred to him because of his track record for extending patients with this diagnosis, quality of life. However, how does someone fight this disease if they think that regardless of what they do the outcome is immient death. Without hope there is no will to fight and try new options of treatment. Who wants to have a team captain that tells you that regardless of what you do you are going to lose?! Where is the incentive to win?! As we have all heard Mental Mind Frame has shown to have a powerful effect on the time frame of survival rate with these life threatening diseases. Those doctors who do not have the social graces or compassion conveyed in speaking to patients should remain behind closed doors in the research lab, so that their words do not have a negative impact on a patient's chances of beating the odds.
I had a surgery on the 24th of April and 90% of the tumor was removed. With the advice of a number of Oncologists, I flew to UCSF Med Center in San Francisco and met with a new team there, to try a new experimental med called Enzostuarin along with the trad method of Chemo(Temodar), and Radiation. The feedback from the 1st phase seems to be very positive. In my condition and the situation here, the last thing I needed is for someone to shut the door on me, Dr. Edward Neuwelt, whom I think is a great Dr. lacks the human/personality skills, My experience with him in the 20 min we met was crushing to myself and my wife. He was more interested in talking about how great of Dr he was rather than what options we had.
I'm a healthy young person with 2 little boys(a 4 year old and a 6mth. old), I'm not ready to go in two years.

alhoty — Mon May 26th 2:03p.m.

I know exactly what you are talking about with Dr. N. We have to mentally prepare for our visits to him. It takes weeks to recover emotionally & mentally from our appts. I said EXACTLY the same thing-he was destroying the quality of our lives. My 25 yr old son was diagnosed in May w/a grade 3 anaplastic oligodendroglioma, & given 3 to 5 yrs. Friends we had in the medical field said not to select a dr by personality. Select one who is the best & don't be hung up on bedside manner. But without hope....what do you have? I'm frantic to try to keep my son's morale up & to help him maintain some hope. Thank God we have a huge circle of friends & family, along with an amazing church family. It's taking everything we have to combat the negative effects from Dr N's comments.Thank you for your post, & God bless you! Drs are not gods. They give us their OPINION, based on their interpretation of facts & case histories. But they don't KNOW.

cindysue — Fri Oct. 16th 12:24a.m.

I will keep you in my prayers. You are spot-on about Dr. Neuwelt.  He was my doctor when I received BBBD chemo for 8 months.  It is challenging enough to have a brain tumor, but then to have a doctor who is self absorbed, rude and even childish when you try to get information or deeper understanding about your situation is just insulting.  While this program had limited effects on my tumor, I know it has been a blessing for others.  In the end I had radiation, which he had scoffed at.  Unlike the BBBD tx, I had no significant side effects from the radiation and it stopped the tumor progression.  It has been 10 years now, post-radiation.  Hang in there, cast your fears and burdens on the Lord.  The prayers of many people sustained me through the darkest days.  

Susan38 — Sat Jan. 16th 9:52p.m.

Hi, As I said in my, probably too long, post, my first encounter was with a Dr. of Death clone at Good Sam. Dr O'Neill is wonderful. I scoured the country for brain tumor treatment centers and also came up with UCSF and, also, Mass General. Their is a first in the US (I think) proton treatment center being finished at the University of Pennsilvania Medical Center in Philadelphia. I called them yesterday and learned that they are ahead of schedule and may open this fall. If you are interested, their URL is:

http://pennhealth.com/perelman/proton/construction/cyclotron.html


I will include you and your family in my prayers. Strength, fred

Jean-Paul — Mon May 26th 2:52p.m.

We love Dr O'Neill as well, he was my surgeon and we sure think so highly of him, he has been sooo great
Thank you Jean-Paul I will also keep you in our prayers

alhoty — Mon May 26th 3:20p.m.

Hi, I am glad that you have met Dr O'Neill!! Jean-Paul is my 'nom de blog' - my real first name is Fred. Thank you for your prayers! fred

Jean-Paul — Mon May 26th 3:23p.m.

Dear alhoty, Thank you for including me in your prayers as I have you. I truly believe that the prayers (some from people whom I have never met) in my behalf, so to speak, have made a great difference in my survival. Warm Regards, fred

Jean-Paul — Fri May 30th 11:58a.m.

Hi there, My son, Ryan who is 28 yrs. old was diagnosed in Aug. 2007 and was operated on to remove 98% of the GBM, grade 4 tumor. He was seen at OHSU. The surgeon was wonderful Dr. Doogan. Ryan was also a patient with Dr. Neuwelt aka Dr.of Death. We have stayed with him since then, but recently have decided to change course and are now with Dr. David Reardon from The Preston Robert Tisch BRain Tumor Center at Duke University Medical Center. I can't say enough positive things about Duke!! Dr. Reardon actually has his pager number on his business cards and calls on Sat. He's amazing. They speak so highly of "HOPE".I'd love to share more with you about Ryan's experience thus far. Please feel free to email me at lynda@thekineticgroup.com. I wish you the best. God bless you!

Lynda
(Ryan's Mom)

Lynda Q — Wed May 28th 1:54p.m.

Dear Lynda, Thank you for the insights re Duke and Dr Reardon, who sounds like a wonderful person! I am keeping UCSF Medical Center, Fred Hutchison Cancer Center and the new, soon to go live, proton center at the Univ. of Penn. Medical Center in Philadelphia. Best, Fred

Jean-Paul — Fri May 30th 12p.m.

and my very best to you Fred! We're going to win ths battle and so are you!!

Lynda Q — Fri May 30th 6:08p.m.

I was diagnosed in 2005 w/ a chondrosarcoma at the age of 32. I had 2 surgical resections at OHSU by Dr. Johnny Delashaw. I had proton beam radiation several months later at Mass General in Boston. That year, 2005, was extremely difficult and full of fear and darkness. But now I am doing well, training for the Portland Marathon in October. My follow-up MRI's show that the tumor remaining in my head is stable and unchanged since radiation.

bpadian — Fri May 30th 4:10p.m.

Comments are now closed.