What I Wish I Knew When I Was First Diagnosed
Here at GBM4Cure we want to get information out to newly diagnosed patients as quickly as possible. On January 4, 2014, we got some of our veteran members together to talk about their experiences as patients and caregivers.
We hope that, especially if your tumor is in a difficult location, this transcript will help you learn about the range of outcomes that are possible, what you need to know right up front, and what we wish we all had known back then.
The following is a transcript of our GBM4Cure roundtable discussion: What I Wish I Knew When I Was First Diagnosed, which took place on January 4, 2014.
Moderator: Debbie Moore.
Debbie: Good morning, panel members and guests. This is a first of its kind of dialogue in our group, so please be patient with us, and adhere to our guidelines. We hope to be able to make a transcript of this discussion and put it on our website for future reference. We have four panel members. Each panel member will answer each question under the question thread.
Debbie: Let?s start by introducing our moderator and panel members.
My name is Debbie Moore. I am a wife, mother, and grandmother. Family is my top priority. I have a full time job, but also enjoy creating my own destiny and have dabbled in many a small business. I started this group in the summer of 2012 shortly after hearing my dad's diagnosis. We were clueless about GBM4. We never heard of any one who even had brain cancer.
I spent many hours searching for information and for a way to communicate with others who had this disease. I was looking for recommendations on what to do, where to go for medical treatments, what to expect, what do we need to do, etc. I found a few websites, some had forums on them, but I quickly realized that none of them were active for months or years. I found groups for brain cancer, but nothing very specific to GBM. I didn't really know what to do, so I started this group. I didn't know anyone else to talk to, and initially just added my family to the page for our own support. I then posted links in those general brain cancer groups, and soon our group was growing.
I was amazed at how caring each and every person who joined this group was. We all were in the same boat and had the same questions and concerns. I know this group has been the saving grace to many a caretaker. I do not take the credit for that, because it is the members that have made this group strong and supportive and dedicated to helping GBM families long after we have lost our own loved ones. My dad, Bill McNamee, lived 6 months with this beast. We celebrated his 70th birthday, and he lived to see 50 wonderful years with my mom.
Judy Wright Dunbar: Hello. My husband of 42 years, Dale, was diagnosed with brain cancer over 2 years ago. We were high school sweethearts, married at 18. We had a great life, marriage, family and friends. Our life together sounds too good to be true. But it was a great life. Dale was a welder, always a great family man, and someone who had a love of the outdoors. He surfed, rode dirt bikes, had a Harley, boated, we went places in our motor home. We had a vacation home at Lake Havasu. We loved our life of camping, travel, kids, family, and friends. Our life was just very normal, but fun.
I am a VP in a large dental chain. So, my job was more demanding than Dale's. But, he always was supportive. We have 2 daughters, who live nearby. They are married with great families. We are all very close. Dale would surf and boat with his sons in law. They were like friends. We have five grandchildren. Dale LOVED those kids. He was the FUN grandpa, the one that took them on his boat, or for rides on his dune buggy. He loved watching scary movies with them. We have always had a nice, loving home. Our kids knew we loved each other. I know this sounds too good to be true. But that was our life. When the kids moved out, Dale and I continued to see them, be close with them and we had a huge circle of friends we traveled and had fun with.
After the brain cancer over 2 years ago, Dale had a poor outcome, living only 3 months after diagnosis of GBM.
Donna McCart: My name is Donna McCart also one of your panel members, and I was a caregiver. My husband had the ?fair? outcome. My husband (Ray - age 47) was diagnosed with frontal lobe GBM4 in 2011. We began dating in 1983, married in 1987 and would have recently celebrated our 26th anniversary. We have one child, a 23-year-old daughter.
Before diagnosis Ray worked out four days a week at the gym, had been doing P90X for the prior four months. Was generally healthy with a bit of high cholesterol and blood pressure being his main concerns. He had his yearly physical and cardiac stress test the Wednesday before his diagnosis. His GBM was primarily located in the communication and executive skills areas of the brain. He was diagnosed on 4/22/2011 after 95% resection on 4/18/2012 and passed 4/2/2012?nearly 12 months of fight! I was one of the original 20 members of the GBM Support Group that joined Debbie upon creation, as I had been seeking information but found the majority of forum or discussion websites were outdated and offered little to no ?caregiver in progress? information.
I have authored a few of the documents on the Glioblastoma Support Group parent page. I have since gone on to administer the sub-group page called ?The Next Step ? Coping After GBM Loss? for caregivers that focuses on bereavement topics. I?ve had the opportunity to meet multiple caregivers in the group in person.
I find that while each GBM experience is different there are so many things that are the same, once we were able to sit down and reflect together on the experience. I was fortunate to keep my husband home throughout his battle. While his health degraded significantly through the last six weeks, and I believe we would have entered hospice phase the week of his death, we were able to travel with help up to the day before his death, returning from a five hour road trip to see our daughter play softball the evening before he died.
Linda Lyons-Bailey: Hi, we were the other "fair" outcome. I?m Linda. I was married to Robert Bailey (?Bob?), who was diagnosed with GBM in August of 2011 and passed away last November 8th . This group had just gotten started when we joined it. I don?t know if we were in the original 20 members, but I think we were. I am a veterinarian, Bob was a novelist, and I too write but haven?t published anything. I?ve been trying to help Debbie write and recruit more content for the website so it will be a good one-stop quick study reference for the newly diagnosed.
I learned a pile on this group, and it?s been one of the only places I could really come to and vent when things were going disastrously. I hope it?s around and active for a good long time.
Ted Hoyt: Ted Hoyt, Dx June 2011. I used to love running. I have run three marathons, five half marathons and twenty or so 5Ks and 10Ks. Usually I would finish middle of the pack. The time I am most proud of is the 2010 Las Vegas Rock & Roll half marathon, a 1:49. Nothing too fast, still pretty good for a (then) 43 year old.
It was running when I had my first symptom. I was finishing up a run when I gradually lost sensation on my right side. Being a runner, I thought to myself I could just run through it like I was used to doing with other aches and pains. This was different, impossible to run when you can?t feel your right side. So I started walking, and sensation returned. Shrugged it off and went on as normal.
Then at the gym I no longer had the strength to do pushups. It just was not there. Plus my right hand and foot would go numb. Keep in mind I was doing CrossFit workouts 3x a week. Never had much upper body strength, yet I still could knock out sets of twenty pushups. At that point I started to worry.
At work my memory just had not been up to par the last several months. Being a child welfare social worker, in a unit assigned to investigate child abuse allegations involving medically fragile children, will cause all sorts of memory issues. There were frequent social get-togethers; I knew it was more than stress when I attended one and could not remember anyone?s name.
So at the urging of my wife and coworkers I went to my GP. The doctor thought that I might have had an aneurysm or a stroke and advised me not to run in the 2011 marathon in San Diego that I was training for. My doctor also ordered a number of tests, one of which was an MRI.
The first MRI was on Sunday, June 12, 2011. That afternoon I received the telephone call that no one wants to get. I was asked by the on call doctor to go immediately to the emergency department. Now it?s bad enough to have a doctor call your house on a Sunday. Having the doctor advise you to go straight to the ED just adds the whipped cream on the excrement pie. My stomach fell to my toes.
At the ED another doctor reviewed the image with my wife and I. I had a large ?lesion? on my left frontal lobe. The only way to know what it was involved digging it, or as much of it as possible, out of my brain. I was admitted to the hospital and the next two days were a blur of different tests. Wednesday the 15th I had my craniotomy. My ?lesion? was adjacent to my motor strip. My neurosurgeon had discussed my wishes with my wife and I, and I told him to get as much as possible without causing me paralysis. He said he would try and that there was no guarantee.
The surgeon ended up getting 80% of the lesion. I was left with my right side extremities numb. The pathology indicated it was a primary malignant brain tumor. A Glioblastoma mulitiforme (GBM). Stage IV cancer. I was told I had anywhere from nine months to a year, a small chance I could survive up to two years. GBM is about the deadliest cancer around, short of maybe pancreatic cancer. Although with pancreatic cancer your brain is spared unless a tumor metastasizes to the brain. So I was (and still am) facing basically having my brain rotting out leading to a slow and miserable death.
I went through the initial ?this kind of thing does not happen to me? denial. It seemed surreal. Not sure how to describe it, I think you have to have that kind of bad news in order to appreciate the black hole of grief it contains. Shocked, devastated. I knew about GBM since I was a social worker working with children and their families with the same type of diagnosis. I knew all about the 7 stages of grief. So once I had my personal view of that black hole I made my choice to skip to the acceptance part. Not to spend my limited time left wallowing in self-pity. To accept that GBM would kill me. And to do my best to live in the moment, and to live the cliché ?one day at a time.?
I am blessed with a beautiful wife and family and a group of friends I do not deserve. For months someone from the CrossFit community would bring a home cooked meal to the house, mow the lawn, do heavy moving, etc. Lots of positive support. Friends were constantly stopping by and calling. I was surrounded by so much love. My wife, the love of my life, supported me as a caregiver. She attended (and still does) all of my medical appointments. Somehow we grew closer. After almost 20 years together I did not know that was possible. My wife has been hand in hand with me.
That?s not to say I did not have the occasional dip into the pity pool. I had to learn to write again, how to walk steady, I went from 195 lbs. of amateur athlete to 176lbs. of cancer patient, could not work anymore, lost my ability to drive, and was in moderate to severe pain all the time. And a month later, at the end of low dose chemo concurrent with 23 days of radiation to the brain, I was in a wheelchair.
Debbie: Great introductions! Lets start with some questions!
Debbie: 1.) How did you/your loved one first get diagnosed?
Judy: We were driving home from a store where we had just bought some supplies for an upcoming camping trip to the beach. Dale got off on the wrong exit and said he felt funny. I told him, ya know you have been having slight headaches, maybe you should see a doctor. He did not want to go. But I made him. We went to the ER doc. The ER doc took a cat scan. He came in to Dale and me and said, ?Sir, you have a brain tumor.? Just like that. We were in shock. I knew nothing about brain tumors. So, then he said it could be one of two kinds, but it looked like glioblastoma. I wrote that down. Then we saw a primary care doc who said that they would biopsy it to confirm the diagnosis. He said that they could NOT operate if it was, due to where it was. But, of course the hospital we chose DID operate, UCLA. So, they did a biopsy, they confirmed it was GBM. Really got no good explanations. I was in clear denial. And, me, being VP of Operations, fixer of all problems in the dental world and in my world, said that I was going to FIX this. I then proceeded to take him to UCLA, USC Cancer Center, City of Hope. All had different ideas on how to treat. NO ONE told me how bad this was. And when I read about it, I refused to look at the bad parts. I just looked at the good stories. So, I thought we would beat it. Looking back, I now know that he had personality change, vision issues, and slight headaches PRIOR to diagnosis. But, I thought nothing of it. They were very slight issues.
Donna: For us, the first real sign that I noticed was about a month before diagnosis. He had a very brief ?episode? where we were driving a long distance and he thought he fell asleep at the steering wheel for a few seconds. I now believe it was some type of seizure. We pulled over and switched drivers and didn?t think about it again. Then about three days before the discovery of the brain tumor he had some extreme confusion but was about 5 hours away from home at my daughter?s. It cleared after a good night?s sleep and he drove home. Three days later he woke up with a headache that became progressively worse. Finally by lunchtime he was almost doubled over with the headache so I thought he must be having some kind of stroke or aneurysm and convinced him to go to the hospital. At the hospital a CT scan revealed a mass. We had him transported to one of the better neuro-hospitals in the area, Jefferson University, that is known for brain tumor surgery. Upon first look the surgeon thought it was a ?simple glioma? but couldn?t be sure til post surgery and the pathology came back.
Linda: Bob started having problems reading and writing. He said he could see the words, but they didn?t make sense. Actually he had had problems for the past two weeks, but didn?t tell me about it, which was frightening because he drove an armored car. (Can?t you see him having a seizure in that?) It was really apparent when we were watching The Sopranos DVD?s and he would try to read the episode synopses out loud. He was really slow and faltering, and when he made ?Chris-tap-mum-mum? out of ?Christopher,? I knew something was really bad. At first I thought it was his eyes, but then I realized it was neurologic. I thought maybe he?d had a stroke, or maybe he was getting Alzheimer?s, until I saw how fast it was getting worse. I took him to my doctor, who did a neuro exam and told us he had a left temporal lobe lesion and sent us straight downstairs to the emergency room. Bob had a CT scan and an MRI done and we got transferred to another hospital where they did brain surgery. I should say that, for months before that, though, he was always complaining about a headache, and once he threw up for no reason. I remember saying one day, ?Sweetie, you always have a headache.? If you?re hearing that a lot, maybe you need an MRI!
Ted: Basically I went to my GP. They thought I had a stroke or something similar. Which led to an MRI, which led to my craniotomy. Fatigue, loss of sensation, and memory loss were my main symptoms.
Debbie: 2.) What were you told?
Judy: The Doctors at the ER hospital, Whittier Presbyterian, said they could not operate due to where the tumor was located. Right parietal lobe, very deep in the brain. The doc said radiation and Temodar were standard care. We chose to seek out other options for his care right after biopsy. That is when we went to USC. They said they will not operate on a GBM tumor unless they can get more than 90% of the tumor. USC said that Standard of care was Temodar and radiation and that is all we can do. (Unless we went to Brazil for a new study. They really told us that.) USC never told me he was going to die. City of Hope: Said they could get 70% and would operate. Never said he was going to die or how serious this was. UCLA: Said they could get 90%. Said he could go on clinical trials. Said there was great chance for him to beat this. Blah blah blah blah blah. We have a PPO. We chose UCLA. After all was said and done, UCLA and the doctors got approximately $300,000 from our insurance. So, I was told Dale's outcome could be good. After the surgery, the doc came out and said they almost got it all. Things were great. We thought we were going to beat it. Was I crazy? I can read. I am an executive. I was in MAJOR denial!!
Donna: Post surgery ? we were told by the surgeon that he was able to remove about 95%-99% of the mass and no one worried about it since they thought it ?looked harmless? and was most likely a simple glioma. In the waiting room of the neuro-hospital there were pamphlets on various brain tumors, sort of a ?know your tumor? pamphlet. I was reading through looking for information on simple gliomas. In there was the first time I read or heard the term Glioblastoma Multiforme Grade 4 along with the stats on GBM but thought it didn?t apply to us. I recall thinking that was what Ted Kennedy and Tug McGraw had.
When the doctor came in with the pathology and indicated it was GBM, my husband was still aphasic and half asleep. The surgeon said, ?I?m so sorry to have to tell you that this is GBM, I really didn?t think it was." I remember thinking about the pamphlet and sliding down the wall to sit on the floor because the stats popped into my mind. I remember the doctor saying he was very surprised that it was GBM4 because it didn?t look like it AND me thinking that maybe he was wrong on his diagnosis. I ordered every hospital record and read the pathology myself along with my primary doctor and there was no doubt. The tumor itself was retained and sent to MD Anderson for retesting and cataloging. Later tumor testing and chart reviews by other doctors confirmed or reconfirmed that it was GBM.
Since I knew the general prognosis I would tell the doctors that they didn?t need to tell me their view of the prognosis, I understood the stats, I would not focus on them. I was never in denial but certainly practiced the phrase coined by Traci Ducie on the GBM Support Group page: ?Don?t go there til you get there.? I very much focused on being in the present moment, period.
Linda: We were told about the standard of care treatment?surgery, radiation, and chemo. We were also told the average survival time was 12-14 months. We had an alert friend, the head of our writer?s group, who sent us a link to the valproic study that was starting at VCU, plus Bob took a strong dislike to the neuro oncologist St. Mary?s had sent to discuss his treatment, so we were motivated to change hospitals anyway. Then I started reading ?100 Questions and Answers About Brain Tumors? which Cullather Brain Tumor Quality of Life Center, which is housed in the hospital we were in, sent up to our room the morning after Bob arrived there. I got pretty quickly how important clinical trials are and started hunting like mad for one for Bob. I wasn?t happy there was no close vaccine trial, so we ended up at VCU Medical Center trying to get into their valproic trial.
Ted: At first they called it a lesion. I remember hoping I had picked up some rare tropical disease during the first part of 2011. My wife Julie and I love to travel and we had gone on a safari to Kenya, and on a two-week cruise through the Panama Canal. They started calling it a tumor after a PET scan prior to surgery. At that point I remember hoping it was some other kind of cancer that had metastasized to my brain. With some of those there are better outcomes and treatments. After the surgery my neurosurgeon looked at the slides in the OR and confirmed GBM. At that time I was told nine to twelve months if I was lucky, and I would be an "outlier" if I lived longer than two years.
Debbie: 3.) What decision did you make?
Judy: We chose UCLA because they said he could participate in clinical trials. We thought if he were in clinical trials, he would have a better chance. Also, they were rated #5 in the USA in brain tumor research. Dr. Isaac Yang would be his neurosurgeon, who was rated one of the top doctors in the country. Dr. Yang told us that Dale would come out the same as when he went in regarding life quality. The downside was that UCLA was 3 hours from my home, and I was working still. So, I would take my laptop and work while he was getting treatment.
However, we had to have the radiation performed closer to home in Fullerton St. Jude, because we could not drive to UCLA every day. UCLA teamed with St. Jude for his care. I did not like that part of it. I wished I was working with one place. UCLA was in the land of, ?Everything is going to be fine. He will do great.? And St. Jude looked at me when they would do radiation and said, ?Look at him???? Also, he never got to do the trial. I learned after the surgery that Linda Liau would have had to do the surgery to be in the vaccine trial. I said, why didn't she do it then? They said because Dr. Yang is the better surgeon. Really??? And you couldn't have told me all this in the beginning? Communication issues...UCLA way too much to handle in number of patients.
Donna: At diagnosis surgery was already complete so standard protocol chemo and radiation were started ? six weeks Temodar and radiation. We began to discuss clinical trials. We chose to be aggressive (or I chose to be aggressive) since he was young and healthy. He was a candidate for MD Anderson?s Avastin with first occurrence clinical trial.
So for treatment - completed 6 weeks chemo / radiation then 5/23 Temodar. He followed standard medication protocol: Temodar, Keppra, Dex in addition to Crestor/Metoprolol for heart / blood pressure / cholesterol. He participated in a clinical research study under the direction of MD Anderson: Avastin Study for use of Avastin with initial diagnosis.
During treatment ? He had continued cognition issues with significant short term memory loss/lack of recall capability. Post surgery was unable to initiate communication, however would respond to questions and complete directions. Longer term memory intact. Majority of motor skills intact, however, had 'weak legs' in the thigh area that doctors attribute to dex (steroid) or other neurological issue. Successfully weaned from dex for about 18 days then needed to be returned to dex due to returned swelling that prednisone didn't work for. There was a disagreement between surgeon and the two oncologists (neuro & radiation) where the surgeon wanted to go in and try to debulk more post-radiation but ultimately we did not do the second surgery.
Linda: A lot of our decisions unfortunately got made for us. Bob got accepted into the valproic trial, but then they realized as they planned the radiation therapy that it was going to be too much radiation to the brain stem and there was no way to reroute things and still stay in protocol. So we got dropped from that trial. At the time I was ecstatic, because I had just found out ICT-110 was opening an arm at UVA, about an hour from us. I had seen the reports about it and it sounded like they were just kicking butt. But we were already on the valproic trial, so we couldn?t join that one. It would have been my first choice from the beginning.
So the minute I found out we got kicked out, I called up UVA and had what sounded like a very productive discussion with their trial coordinator there. We were getting Bob set up for his first appointment and I was looking up maps to UVA when they called back and said the time frame wasn?t right for them, treatment was supposed to start by six weeks after surgery and we had only one week left. Now, they did let us know they could have gotten it done, but they didn?t want to rush the first patient on protocol. They also sent me an email, and attached to this was a pile of internal emails between themselves that I don?t think they intended for me to see and that were not pleasant to read. They just didn?t want to hurry themselves to get him in, is all.
Personally, I was prepared to haunt the lab for Bob?s tissue samples and drive them all the way up to Pittsburgh by myself overnight if I had to?and I?m afraid to drive in downtown Richmond?so you can imagine how devastating this was. We cried and cried over it. And then the six week mark was up, and Bob had to start treatment, so we just ended up with standard treatment at VCU with Dr. Mitchell Anscher and The Wonderful Dr. Khan?whom Bob liked a lot more than the oncologist they sent up at St. Mary?s, by the way.
Ted: I chose to do "BSC" (basic standard of care). In my case I told my neurosurgeon to cut out as much as possible without leaving me with any major deficits. He ended up resecting about 80%, it was close to the motor strip on my left frontal lobe. After surgery I waited 3 weeks before getting my "mask" and doing radiation. I did it concurrent with low dose Temodar for 23 sessions. Two weeks after surgery I walked a 5K with my friends, two weeks into radiation I was in a wheelchair.
Debbie: 4.) What happened, and what were your feelings about what happened?
Judy: Before Dale had surgery, he was great. In fact, after surgery, he was walking around, laughing, and was doing great. The surgery went well. The decline started when he began the radiation and with the steroids. His symptoms started with extreme agitation. He wanted to smoke constantly. That is all he cared about. That was an odd symptom, wanting to smoke. His personality became aggressive and very different from the Dale I knew. He would get sundowners where he would be up all night screaming. He was not in pain. He was just not himself. They gave him more and more pills to try and calm him. When he wasn't agitated he was sleeping. He would cry lots of times. He would say that he would miss me and the kids. But, we never talked about his death. He soon was incontinent. He could not walk soon after radiation began. I was told by UCLA that this was common and after radiation ended, he would start getting better with his symptoms. I never saw him get better. He went from healthy smiling Dale after surgery on October 21st to horrible death on January 20th. And during this period of time, every day would be worse than the last. All the UCLA docs would say was just wait, he will be better after radiation. The final straw was that I took him to another doc about 3 weeks before he died because I wanted to get another opinion. The doc said, look at him. Look at his MRI, his tumor is larger, it has crossed midline, he has another one. What do you think? So, really UCLA was trying to keep him alive, for what, I do not know. So, Dale had a very poor outcome. From start to finish. And I am sure that someone could have predicted this by the looks of his tumor and where it was.
Donna: He was followed very closely due to the clinical trial. Saw the neuro oncologist, the radiation oncologist, a neuro speech therapist and a research assistant every two weeks. He had a monthly MRI with and without contrast. He had various cognitive testing throughout. He had blood work in detail along with the Avastin infusion every two weeks. The blood work two weeks before he died was in the middle of his 5/23 temodar (the third day) and his counts were low so the doctor said to stop the last 2 days and we?d resume with next cycle. He had an MRI the Friday before he died. We were due at the oncologist at 10am and he died overnight. In terms of my feelings...hindsight is always clearer but we did everything we could think of and the doctors were all attentive and focused. I do question some decisions but also see others who have made the opposite decisions with similar outcomes so I focus on feeling like we did everything we knew how to.
Linda: What happened: I feel like we were very lucky, maybe not in terms of longevity but at least in terms of quality of life for most of the time that Bob had. I was terrified that I was going to end up hopelessly trying to communicate with someone who had lost all ability to make sense, and we were going to be using pictographs or something. Or that he was going to be bedridden for years and how the heck would I manage?? But Bob was walking, talking, reading, writing, driving, cooking, and doing some light housework from September up until last June. He kept apologizing for being sick; I kept telling him he?d been an easy ride so far, and being on this group and reading about some of the stuff that happened to people, I knew we had gotten off easy. He even did some target shooting with his son and competed in a pistol match or two. The bad thing was we got that false sense of security, where you?re TOLD what?s going to happen but you start to think you?re doing so well you might be the lucky one. When The Wonderful Dr. Khan told us he?d never had a patient make it longer than two years on Temodar, well, that says a lot. Around about March, Bob started scuffing and shuffling when he walked, like a little old man. He?d catch the heel of his foot on the step he was leaving when he walked downstairs. And we can only get in or out of our condo down a flight of cement stairs, so I was afraid he?d hurt himself. But the scan was OK, so his doctor tried enrolling him in physical therapy to see if that would help. Bob HATED physical therapy. He just seemed to be getting weaker and weaker after every round of chemo, until in June we had what I thought was a VERY bad round, and then it became apparent that it was much more than that going on. First (and last) recurrence?was three and possibly four tumors, basically all OVER the brain. No way we were going to beat this one.
Feelings about what happened: On the plus side, as I said, we had an easy ride for most of the way. We were very, very lucky in that Bob was functional and able to do everything he wanted for most of two more years. He rode roller coasters, he drove, he went to Michigan and visited with family, he did book signings, he finished his last book, he made it to one last writer?s conference. I dropped the other family caregiving responsibilities to just focus on him, and we had the marriage we had been trying to have for the past four years, if you don?t count the doctor visits and the ?scanxiety? every eight weeks. I?m sorry that the time was so short, and that when the cancer came back it was just so aggressive and so overwhelming that really nothing much could be done.
But then again, if it had been just one little spot, that would have been harder in a way, because Bob was saying he didn?t want any more surgery, and you know what is most likely to guarantee another two years if you can do it. I would have been pushing for surgery, and who knows what might have happened then. I wish we could have had more than just two short years, but that is the nature of the beast. Unfortunately.
Ted: I never even went back to work. Made my supervisor (and good friend who I still see) clear out my desk. I wrote goodbye letters to my family and close friends. When people came over I took the time to tell them how special they were to me. It felt like my world was giving me a big old sloppy hug goodbye. I never, ever suspected I would live this long. I remember reading about Dale, and feeling like I have no right to complain about anything. What Judy, and most caregivers, go through is the heartbreak in this. I did start physical therapy, practiced writing with my right hand (had some numbness and loss of function on my right side). Threw out or donated most of my clothing. Sold my boat (which hurt me more then the surgery), and just tried my best to live here in the moment. It's been an emotional roller coaster ride ever since.
Debbie: 5.) How did you feel about the medical treatment that was received?
Judy: My feelings about what happened were that UCLA did not communicate the truth to me about this outcome, did not go over choices we may have had, did not explain vaccine trial criteria and that it really would not cure Dale. They were not straight with me. I think because they are a research hospital, they just want to see people survive one more day, one more month. But, to me they did not address life quality issues. Dale only lived 3 months, and they were a very bad 3 months. Someone got $300,000 and there was never a chance for Dale, because of tumor location. If someone would have explained that Dale's tumor was in such a bad spot and that he probably would not survive because of that, we may have made other choices. So, I am not happy that we put him though the hell he had to go through for no hope.
However, Dale did probably receive the best care that was out there. UCLA is a great research hospital. He had the best. The problem wasn't that his care was bad, it was that NOTHING would have helped him. And, why would someone want to prolong a life that had such poor quality? I do not understand that part of the treatment plan. So, yes, they treated him well, but WHY? It did not help him, and I believe they knew that from DAY ONE.
Ted: There are so many Dales out there. Sometimes the best treatment is no treatment. If only we had a magic ball to look into. I think genetic testing is pretty close to a magic ball and that is why it is so important.
Donna: Treatment was standard stuff. The clinical trial was something that I think was good and bad. For us it ensured he was seen every two weeks, we had MRIs more often than others, and his blood work was also every two weeks. The bad, I will always wonder if, as Judy says, whether the trial helped or if he became a ?research subject? to some of the medical team. I appreciated that Jefferson used a team approach. I was always given plenty of information. I also felt that I had an advocate in my corner/our corner with the infusion nurse. We saw the same people every two weeks and the infusion nurse would spot each little change. Between her, my sister who is a DPT and other medical professionals I learned a ton of information on products, durable medical equipment and how to do things such as transfer a 300+ lbs man from a bed to wheelchair all by myself using just a beach towel. I think there is and always will be questions on what else could have been done until they find a cause and cure.
Linda: If we couldn?t get into a clinical trial, we got the next best thing. Bob?s doctors were fantastic, his nurses were fantastic. And some here are already familiar with The Wonderful Dr.Khan. The only sad thing was that the radiation affected Bob?s ability to read and write as much as it did. We really didn?t have any warning about that, because he was doing quite well until the last week of radiation. Then, BLAM! Things slid downhill in a hurry, and his writing ability never quite made it back up to what it was before the boost. It was really tiring and frustrating for him, and made it really tough to finish his book. That was his goal, to live long enough to finish his fourth novel that he started before diagnosis. We have no idea, just reading and writing and living our lives, the kind of sheer effort it took for him to sit at the computer and get a paragraph out.
Ted: I will start with the bad aspects of my medical care: They never kept the biopsy sample or tested it genetically. This was a huge mistake. Scripps Medical Group otherwise treats me wonderfully. Personally I would have skipped the Temodar and possibly the radiation. They did nothing for me. If my tumor would have been sent out for genetic testing, I would have known what my MGMT status is. I had to wait until my recurrence Halloween 2011 to find out that Temodar had no efficacy for me (I personally know many people who have done great on Temodar, so don't take this as a slam to chemo). My oncologist was the one who gave me some hope when he told me his goal for me was remission. After Halloween my oncologist took me off Temodar and I started Avastin soon after. I had my 48th infusion last Thursday.
Debbie: 6.) If you had it to do over again, would you have done anything differently? If so, why, and what would you have done differently?
Judy: I would have stayed with City of Hope.
Donna: First, I learned everything I could about dex/dexamethasone. It's a curse and a blessing. Once a person becomes steroid dependent it adds a complication that you can't imagine. It's difficult to know if it's steroid dependence or swelling causing certain things to happen. Also understanding the side affects and the potential for inducing Cushings along with weakening of the thigh muscles/gait muscles.
Find good medical advocates. I had a real advocate in Ray's infusion nurse and also had an advocate in his insurance care/case manager. Our insurance offered a ?Care/Case Manager? for individuals diagnosed with cancer. She helped me formulate questions. Found information on how to have case reviews done at other facilities. She helped me solve any issue I had with referrals, pharmacy, or insurance. She was a blessing.
Ask the Radiation oncologist about lotions / creams. Make sure that you take subtle signs of pain as seriously as you can. Depleting certain nutrients can cause pain.
Linda: What would I do differently? Push harder to get into ICT. I didn?t even try to argue with them. If I had, maybe Bob would still be here today. I really think that, because half of their Phase I trial is still with us five years after diagnosis. That?s only four people, but with GBM, that is HUGE. I knew this and didn?t push harder to get in. I just didn?t think they?d listen. I tend to roll over and accept what other people want too easily, and I hate to think that if I weren?t that way, Bob might still be here.
I read that Cheryl Broyles hasn?t ever received radiation. If I had known the ?boost? would affect Bob?s writing ability as badly as it did, and that he would only live two years no matter what we did (well, I sort of knew that anyway, but you don?t REALLY know ?til it?s over), I might have thought about skipping radiation or doing all but the boost. I know it sure would have made Bob?s life easier. But, would the tumor have come back sooner? I don?t know. Seems like you could always go back and boost later if you had to. But I didn?t even know enough to think about this then.
Bob needed a lot of help cleaning up his chapters. What writers call his ?voice? was still there, but his grammar and spelling were A-W-F-U-L. For this reason, I would wait until he had a chapter done and then sit down to edit the whole thing, since it frequently required most of a whole weekend. Imagine my shock when I sat down, after the MRI showed huge recurrence almost two years later, and looked at the last paragraph he wrote, right after he finished that last round of Temodar, and found nothing but gibberish. He had always been able to write words before and you could read what he had written. When I looked at that last paragraph it was like this: ? solgueoth thowshfh thosjehndodfe wogggigiehwlsa.? If I had seen that, I would have known immediately it wasn?t just a bad round of chemo.
If I had seen how bad the problems really were the day he wrote his last paragraph, we wouldn?t have run into the Fourth of July holiday, maybe gotten his MRI sooner, maybe started Avastin before the recurrence tumors had gotten so big. Everything was working against us at that time. By the time I realized we were in big trouble, his doctor was out of town, and then when he got back to us, Fourth of July really screwed us in terms of being able to get the MRI done and get the Avastin started. If The Mofo hadn?t gotten such a head start, maybe Bob would have done a little better at the writer?s conference, not been so tired, not been so confused. I doubt he would have lived longer but who knows? He had so looked forward to it, and it was such a tough and shaky time. It was good we went, but it could have been so much better if he?d been in just a little bit better shape.
When starting treatment: It would have been good to ask the radiation oncologist what he thought the most likely outcome would have been, function-wise, after treatment. I mean, they don?t have a crystal ball, but if he had forecast major problems reading and writing, we could have looked for a work-around like Cheryl did. (For those of you who haven?t heard of Cheryl Broyles, she is one of our very-long-term GBM patients. She?s had something like five recurrences and is still with us going on thirteen years at this writing, with minimal neurological deficits.) You know, I did sort of wonder about this, but we were signing on for a clinical trial we didn?t want to get kicked out of, and I guess I was too intimidated. I back down too easily, and I did here, too. But if I had read Cheryl?s story before that, I would have known you could decline radiation or maybe even ask for changes to the protocol, if you weren?t on a trial. That might have emboldened me to speak up. I had read the radiation horror stories?I just didn?t know we had choices.
Ted: I think the number one thing has to do with where you get treated. About 99% of the time it seems like if surgery is doable, it happens quick, like within 48 hours. I think that might be a mistake. If I had to do it all over again I would have gone across the street to UCSD Moores and had it done there, at a hospital that has neuro oncology and neurosurgeons. That is also why it is so important to have someone who can advocate for you.
Donna: Ted, I fully agree with you. In the early decision making there is such a 'rushed' pace that you make many decisions based on reaction. I'm not sure we would have made different decisions but I may have if those first few days hadn't been so crazy.
Ted: That's why one way to describe it is a slow motion fatal car accident. And I agree, we probably would do the same thing today knowing all that. I mean here I am 2.5 years later, so I credit that to my advocate and wife Julie. Julie worked in pharma research, so she knew about clinical trials.
Debbie: 7.) What questions do you think the newly diagnosed should be asking?
Judy: 1. What will happen to me if I do nothing? How long will I live? When will symptoms get worse? I know you cannot predict but give me your best guess.
2. Why do some hospitals say, ?We cannot operate,? and others say, ?We can operate?? Isn't there some standard guideline?
3. If there were 2000 people who were just diagnosed with GBM as an adult, and 2000 was the worst and 1 was the best, what would my loved one's tumor be and why?
4. What is the best predictor of how my loved one will respond to treatment?
5. What is GBM? Explain it to me slowly. Take two hours if that is what it takes. Show me my loved one's tumor, really explain it slowly and carefully.
6. Give me the quality of life list of changes that will probably happen to my loved one and when. Don't give me a pamphlet. Talk to me.
7. What REALLY is a clinical trial? Do clinical trials extend life or just give the hospital information for future patients?
8. Is my loved one going to die in the next year most likely? Please do not talk to me about the miracles.
9. Why did my loved one get a GBM tumor? If unknown, what are some of the causes that are currently being explored?
10. What are the best books, documents, research papers, I can read on GBM. Can you give me a written list?
11. What are the side effects of the medications my loved one will have to take?
12. Will my loved one's personality change because of the tumor or because he/she is depressed?
13. How long has my loved one probably had this tumor? If it had been discovered at earlier stage, would he/she have had better change of living longer with better life quality?
14. In your medical opinion, if you knew life quality was going to be bad, would you skip treatment all together? If you say no, why do you say no?
Donna: Most of this has focused on treatment. I also want to talk to the newly diagnosed about care and quality of life.
Unfortunately, I have significant experience with cancer in general, having lost my mother in 2010 after a five-year battle with breast cancer, and the intense eleven-month battle for Ray. I?ll not only share my personal experience but can discuss the wide variety of medical equipment we used and offer my view on products we used throughout both situations. I learned that at 5? 4? and not very strong, using the right techniques, I could transfer a 300+ lb unstable husband from bed to wheelchair using leverage and a beach towel.
Research durable medical equipment and make your house as handicapped accessible as you can. Learn how to use wheelchairs, commodes, transfer tools, gait belts, walkers. Install rails and other safety items. If you have a multiple-level house figure out what you will do if you only have access to a single floor. I joke now and say I can transfer a 300+ lb man from chair to bed using a beach towel, but I can. I can also get one in and out of an SUV on my own. I can use a commode seat, a plastic pool, a ton of space heaters and buckets of warm water or a spray nozzle to help someone shower. I know what a Hoyer lift is and how to use it to get someone up off the floor when it's just me and them. I can butt-scooch a person across the floor to get them to a wall to help them stand up.
Linda: Wow, Donna, can you teach the rest of us?
Donna: Look into nutritional supplements. Nestle nutrition offers protein and caloric-type products that can really help. There are also websites such as ?parentgiving? that you can look for supplements, products (pill glide spray, pill glide cups, boxes of ebd pads, gloves, cleaners, rubber sheets, underwear, etc) that can be delivered to your house if you do not have the ability or do not want to take the time to go get them.
I also was fortunate enough to have the ability to trade in a car and buy a used van that could be used for transportation. It had a 'turning seat' that would turn and lower to the point that I could transfer Ray into it, seat buckle him in, and raise it back up.
Ted: Donna, I remember reading your posts on the dex dance. Like Ray, I too was on 24mg of dex by December 2011. I can remember getting up at 2 a.m. and walking to the doughnut store. The cramping, the loss of muscle, I even developed adhesive capsulitis I think as a result of being on dex. Truly a love-hate drug. On one hand it saved me, on the other hand there was the physical damage it caused to my body.
Donna: Another thing is, ask doctors and nurses for tips and tricks. While Temodar needs to generally be taken on an empty stomach, the doctor told me I could give it to him with pudding once when he had difficulty swallowing. Another was that radiation uses thousands of calories, so it's key to keep calories high during that. Also look at foods throughout that will help create/keep blood cells healthy. For example, iron-rich foods like kale, oysters, and red meat. Play with recipes that have high nutritional value so that when and if you need them, you have them handy.
Linda: If I were newly diagnosed, I would want to ask, What is the most typical course you have seen patients like me follow? These doctors and nurses treat a LOT of patients. I know we all want to feel like WE are the ones who will beat the odds, and Bob and I had our moments like that, but really, we were typical, and most of the time I knew that. Most people are typical, and chances are you will be, too. Also, try to plan ahead what you will do if, um, something happens suddenly and your patient is virtually incapacitated overnight. This happened to us after the first Avastin--Bob got HORRIBLE gout and LITERALLY could not even move in bed for like a week.
Fortunately I had planned four days off and that was when that happened. If I had not had the days off, if I had had to go to work, I honestly do not know WHAT I would have done. Either we would have been out a significant amount of cash, or there would have been no one to stay with this helpless person who wasn?t talking right and couldn?t do anything for himself. This crappy disease can just knock your legs right out from under you in a heartbeat. And when/if that happens the caregiver will need big help, right away, especially if you are the sole caregiver AND breadwinner, too.
If you have lots of friends and family, good, but if you don't, think about what you would do and try to have someone you can call for help, money set aside in case you are hourly and suddenly have to stay home from work, etc. Family leave is nice but not everyone has that. If you call a home hospice they may not be able to send someone in right away. Be aware and know you should be prepared. It?s like having a child: If I woke up tomorrow and this person was absolutely unable to do anything at ALL for him or herself and it was likely to be that way for one solid week, what would I do? You need a good answer to that question.
Donna: One thing I learned is that there are also times where folks think someone else told you something. The doctor thinks the nurse told you, who thinks the radiation tech told you, who thinks the radiation nurse told you that you should use, let's say, Aquaphor versus Vaseline (hypothetically speaking). So spend time asking: What else do I need to know, what didn't I ask that I should, is there any thing else you usually want to make sure a patient knows...during every visit.
Linda: Donna, I guess we didn't have these issues because everything was going so well for us...good to know!
Debbie: 8.) What do you wish people would ask you that they don't/haven't?
Judy: I want to make one comment. I don't know if it?s in these questions, but I have discussed this with others who had poor outcomes and they feel the same way. Every tumor is different. They are in different places, they are on different sides, etc.
Just because one person does well and one does bad, it does not mean that the one that does bad did not fight, or did not get good care. It means the bad outcome was going to be bad no matter what. So, sometimes those of us with poor outcomes get hurt when others say they did better because they went to better hospitals, had good doctors, did clinical trials, ate good food, took certain vitamins etc.
I wish doctors would put our loved ones? tumors in categories. So, this way we could make a better decision on how to treat. I know they do tumor markers, etc., but it was not made clear to me that Dale's tumor was in a very bad place in the brain. That is why two hospitals said they would not operate. Now why would two hospitals operate and two would not?
Anyway, I just know that I feel bad when I say he lived three months. I feel like we failed in how we treated and how he fought. But, in my heart I know we tried just as hard as anyone. He just was doomed from the beginning.
Linda: And don?t forget those people who think they?ve kept recurrences away with their attitude. You cannot control cancer with your thoughts. Did Bob have the greatest attitude ever? Hell, yes. Is he here? Um, no. I really hate it when somebody says, ?Well, my attitude is everything,? (and therefore you are getting what you deserve because you just aren?t being ?positive? enough.) There?s another word we can do without: ?positive.? All the ?positive? in the world wouldn?t help Dale, or Bob either once the tumor came back, and that?s the honest truth. Please don?t abuse the patient and caregivers with your positivity.
Donna: One thing that no one asked, which I'll answer but hope Ted does also...From the patient perspective, what is aphasia like? One of our members (Lorne) really helped me understand this, and in turn, by understanding, I often had more patience. He said to me that it's like looking at the remote control for your television and thinking it's a toothbush but knowing it's not really. Your thoughts are jumbled. Things don't connect. When Ray first became incontinent I kept thinking, Why isn't this man able to get to the bathroom when it's right in the next room? Given he wasn't able to explain to me that he had to go and didn't know or wasn't able to connect the dots, he would at times sit there and go just where he was or walk to my stairs to go up to the upstairs bathroom. Another time he was shaving and was doing just fine but suddenly started shaving his arm hair. I realized he wasn't being defiant, wasn't being childish, he really couldn't connect all the dots.
Linda: We had that experience, too. Through most of Bob?s Big Recurrence Week, I?d get woken up in the middle of the night: ?Linda! Linda!? Usually twice, because another thing: GBM patients with brain swelling have to ?go? every two to three hours. Why? I don?t know. And I?d go running in there with the pee-pee jar and all was well-contained. Until one morning we woke up and the bed was wet, and this canvas bag I had on the floor was wet, but Bob wasn?t wet, and his underwear wasn?t wet. And I?m like, ?WTF,? you know? I thought it was water. Bob always got thirsty at night and had to take a bottle of water or diet soda with him to bed. Always did. Well, as it dried out, we figured out what it was. But Bob couldn?t remember doing it.
And then finally he did remember, and he told me he woke up disoriented in the dark and couldn?t remember where he was. And he knew he had to go, but he couldn?t remember what to do. So he just?did it right there. Words of advice: try those cloth ?chucks? around the bed if you?re sure your loved one won?t fall on them. And buy a waterproof mattress pad and sneak it on the bed ASAP. You could prevent some ruined furniture or carpet, which is good if you don?t have the funds to replace these things.
But this isn?t aphasia; aphasia is problems specifically connected with speaking, reading, and writing. I don?t know what this is. I started calling it ?brain static.? Like when he?d go in the bathroom in the morning and know he was supposed to be brushing his teeth, but didn?t see the toothbrush even though it was right there. And then he didn?t remember that he needed toothpaste. That sort of thing. Once you got him going, he remembered, but he had problems remembering what to do first. When the Avastin stopped working, this got worse. Way worse.
What I wish newly diagnosed would ask me:
What is it with these clinical trials? Answer: Push hard to get into one, and don't drop your efforts at any of your trials unless and until one of them has actually started your treatment and not dropped you!
There is a searchable database online at www.clinicaltrials.gov. It will tell you things like what the trial is studying, where it is, and who is eligible. Sad to say, many of our GBM patients will not live long enough to benefit from the latest treatments when/if they are FDA approved. This is your only chance to get treatments that are more advanced (and hopefully more effective?but no guarantees) than standard of care therapy. Start looking immediately once you get this diagnosis.
As we found out the hard way, most clinical trials are for newly diagnosed only, and have to start by the time chemo and radiation start or would start. So you have six weeks to find and enroll, and timing is everything, especially if it?s a vaccine trial and they need time to make your vaccine. And, for the love of God, people, please, ask your surgeon to save a sample of live tumor if you are considering a clinical trial. Certain trials require that, and if none was saved, you are out of luck.
Question: How much help am I going to need, can I do this by myself? Answer: It is possible to get through this with minimal help, but it is going to be damned difficult. Line up some people who can GIVE YOU A BREAK, and try to get enough sleep each night, because at some point you will need it. If you can get a pro to show you things like how to help a disabled person downstairs, how to turn, how to change diapers, it will help when you get to that point. It will SO not hurt you to get in touch with an at home care service if you are short on friends and family, even if you don't need it yet. Then when That Big Down occurs, you are not frantically flailing around trying to get hooked up with some help when you are at work and worried about how someone at home is doing who should not be home alone, but you had no choice but to come in to work. I was rushing home to check on my husband, I was running to the phone between appointments at work trying to get at home care lined up...Trust me on this one, you don't want this to be you. Being scared how someone at home is doing because you had to leave and had no help is absolutely frightening.
Also, anybody close to turning 65, we ended up with good health insurance for Bob?finally?that saved our necks financially, and I can probably write a primer on how we got through this without going bankrupt. We didn't have insurance at the start. Medicare research all done for you over here...
Ted: Each of us chooses our paths, and I respect them all. That said, I just accepted that I would do my best to try and appreciate every day. I used to get upset with the "NEGU" crowd, since I'm not one of them. That?s not to say I don't have hope, too. I hope to live long enough for a cure or even an expansion of today's cocktail of treatments for GBM. Just since my diagnosis, so many more treatments have come out and our understanding of GBM has increased incredibly. That stated, when I get to a point like Dale I want a quick death. Hospice does wonders for some, others suffer and linger on for months. That's why I advocate for euthanasia. I still have hope, just a backup plan too.
Linda: Ted, what is NEGU?
Ted: Never Ever Give Up
Debbie: 9.) Last question. Is there anything specific you wish you had asked for when you started treatment? Either from the medical staff or your community, your family and friends?
Judy: 1. Medical staff: more reading materials handed to me or more documents on GBM. Life expectancy of my loved one. Quality of life concerns. Surgery or no surgery options. 2. Community: A checklist of the services available for cancer patients, easy to find, without lots of research. A one-stop shop. 3. Family: I asked, I got. We had a calendar with schedules of who does what. We did a good job in this area. 4. Friends: Didn't have to ask. Had dinner brought every night. Visits all the time. Phone calls. Not just what can I do? They just did it.
Linda: You were lucky. Very, very lucky. Anybody reading this who is not the primary caregiver of the GBM patient: These people need help. Help, help, help. Please see if you can?t give a little of your time to help these families. The kind of support Judy is talking about is the kind of support families really need. Please pitch in.
Donna: Before all of this, I knew very little about the brain and how it functions. Now I know that someone may be able to sing but not speak, may be able to respond but not initiate communication, may be able to walk one day but not the next but able to walk again the day after. I would tell folks to learn more about the brain, the area injured, what a traumatic brain injury does and understand how fast it can evolve. Some folks drive again, some go back to work, some run 5Ks (Go, Ted!) and some cannot walk. There are so many factors and each GBM is as different in many ways as the person diagnosed. While many experiences are the same, there is no single way at this time to predict your own, so you just go through it.
One other suggestion for caregivers that I still use to this day: I keep a steno book on my counter. Whenever I thought of something that needed to be done that I didn't have the time for, I would put it in the steno book. When friends and family came around and asked what I needed or what they could do to help, I would hand them the book and basically say?anything in there.
Linda: I would have wanted a website, a group, and a posting just like this one. Because the stuff we ended up needing, and the stuff we ended up NEEDING TO KNOW, we were not able to predict, even reading online and the brain tumor book I have, and Brain Tumor Hospice.com, and all these other sites. When you are aware you don't know something, you can ask, but when you don't know, and you DON'T KNOW that you don't know, you get blindsided quick, like I was several times. With a discussion like this, I could look up here and in the matter of one morning or afternoon know that some doctors are relentlessly optimistic when they shouldn't be (good we didn't get one of those!), and that?BOOMO! Big Disability can just take you over in a scant couple of days. Ya gotta be prepared for these things, though may they never happen to you. May the odds be ever in your favor. Here you can know that they may not, so I guess the answer to what I would have asked for is, we're here trying to create it right now.
That and, when you do go to a place like Cullather Brain Tumor Center, or anyplace else that tries to direct you to resources, good grief. Now, they did provide us with twenty-four hours of paid care a week while Bob was really declining, and thank God they did. I would have had to quit work, I would have lost all my clients, and we would have been struggling to get by on Bob?s social security alone. Student loan payments would have gotten screwed up, and affording Bob?s health insurance premiums, the mortgage, and food, too, would have been extremely difficult! So I was very thankful that at least I could keep working, difficult though that was.
But when you go to these offices, they hand you reams and reams of paper about the programs you might qualify for, and distant 1-800 support lines you might call. I wish there was a computer program somewhere you could just type your information into, and everything that might pertain to you would come up, together with a succinct explanation of what it is so you can decide whether to contact them or not. Sort of like clinicaltrials.gov, only it?s a centralized database of help for cancer patients. This time in your life is not a great time to end up stacked up to your nose in a pile of badly mimeographed (I know they don?t use this anymore, but you would never know that from some of the paperwork I saw) paperwork. You are already overwhelmed as it is.
Maybe there is one and I just don?t know. Anybody out there a computer guru with a little free time?
Ted: I wish I would have heard about Greg Glioblastoma Survivor, Jerry Hatzimanolis (a 20 year survivor), Cheryl Broyles, and a ton of other long-term survivors. Someone has to be an outlier, why not me or you? I have been blessed with an incredible group of friends and family. Above all, my heart is Julie. She keeps me going.
Debbie: I want to personally thank all our panel members for taking their time and sharing with us some very personal insights and thoughts about what they wished they knew when they or their loved ones were first diagnosed. I think we can now open up the discussion for other questions or comments. Please post questions related to the topic: ?What I wish I knew when first diagnosed.? We will have future discussions on other topics about caregiving, finances, hospice, end of life, etc. at a later time. Let?s keep to this topic for now.
Linda: Judy, you gave new patients a lot of good questions to ask their health care providers up there. Especially with regard to #12, "Will my loved one's personality change because of the tumor or because he/she is depressed?" and #6, "Give me the quality of life list of changes that will probably happen to my loved one and when," what were those things like to deal/live with, for Dale and for you?
Judy: #12. Dale's personality absolutely did change. Before diagnosis it changed. But it was subtle changes. He was quieter, more reclusive. But I thought maybe he needed antidepressant or he was getting older and cranky. After diagnosis his personality was still different but not real bad. When it got really bad was having radiation, taking the steroids and Keppra. He would be very agitated. We kept trying Ativan. He just was so restless and angry. He only became violent once. He took his cane and slammed it against some shelves in the house. He never was violent with me or anyone else. So, did tumor, radiation and drugs cause this? Yes. Did his knowledge that he was sick cause this? Yes. I really believe it was both. His tumor was in a place that just changed him so much! It was a horrible 4 months.
#6. Quality of life changes: After 2 months incontinent. Slept or was agitated all the time. Asked the same question over and over. Thought house was burning down when he smelled cooking food. Couldn't walk after 2 months. Couldn't sit up. Falling out of bed. I don't think could see well the last month. Couldn't drive. Stopped reading. Couldn't watch TV. At least never did anymore. Always cold. No more smiles. Couldn't ride his Harley. No interest in any fun. Oh my, need I go on? Once the radiation started frying his brain and the tumor kept growing, it was a horrible nightmare.
Linda: One thing I want to ask all our participants is, Where were you treated? I know some of us said, but I?m not sure everybody did. And, how big of a facility was it, in terms of, for example, did you see roughly the same people every time, or was there a staff that looked like millions?
Judy: UCLA. Big facility. Too big. Not enough personal attention. Too many other patients. Lost in the tons of brain tumor patients that chose UCLA and Dr. Tim Clousney, due to great reputation.
Donna: Kimmel Cancer Center at Thomas Jefferson University Hospital under the direction of MD Anderson. The treating physicians were staff at TJU but key decisions were partnered with MD Anderson.
Linda: We were at VCU Health System, Medical College of Virginia in downtown Richmond, and I did not feel like it was all that big in terms of who we saw. We saw many of the same folks multiple times and certainly did not feel like we were being rushed through or anything, so I think that contributed to NOT having a lot of the errors Donna talked about, like this person thought that person told you, that sort of thing.
Ted: I have had Scripps Medical Group here in San Diego for over 20 years. They have overall been good to me. Most of my doctors at Scripps went to Ivy League medical schools, or are natives to San Diego. They have 3 hospitals in the county and many small clinics. The hospital waits were hard. I mean, it's a hospital, so there's always going to be an emergency going on. The clinics are a completely other story as far as being stuck in an exam room for what seems like an eternity. The Scripps clinics are pretty quick and you get seen at your appointment time. So now I drive up to Encinitas to the outpatient clinic for my every other week Avastin infusions. Much shorter waiting time. I started going to UCSD Moores for Novocure May 2012 and they have been good also. I continue to see my Scripps oncologist (Dr. James Mason) as well as my UCSD neuro oncologist (Dr. Santosh Kesari). It is always a good idea to get a second (or third) opinion.
It is a good point and a common complaint: Long waiting time. That first year and a half my life seemed to revolve around different doctors? appointments. At Scripps they have a computer in the exam room that shows how long you have been sitting in it. One time at the hospital following my craniotomy the timer went up to 30 minutes. I got up and we went home. They never did that again. Now I know to bring a book or something else with me, even to eat first. Prepare to sit and spend a ton of time if you?re in your first year of diagnosis.
Linda: I second that. I learned early on to bring a book, checkbook to work on, mending that needed doing, something to do. Waiting was harder for Bob since he found it so hard to read. He?d be sitting there staring into space and griping. His son had an ipad, so when he took Bob to NIH to have his bimonthly MRI (Bob did get into one study up there, but it wasn?t a treatment study, it was an MRI study?saved us a TON of money!), Adam would take his ipad and they?d sit and play Scrabble.
Working part time, everyone thinks, Oh, you have a ton of time. But when it?s clinic every other week, there?s a whole day or two gone. When it?s just you cooking, just you doing the laundry, just you doing the housework, the patient care, all the household paperwork, just you holding down the job, AND you need to spend time with what is probably a dying person, and make the time to do fun things, too, it looks you have a ton of time, but you don?t. And frequently you aren?t getting enough sleep. Be mindful. Seek help.
Linda: Donna, you said, "I find that while each GBM experience is different there are so many things that are the same, once we were able to sit down and reflect together on the experience." What did you find tended to be the same for patients and families no matter what?
Donna: Linda, I think that while time frames differed for those who had passed, the speed at which decisions needed to be made, the terminology, the medications, the dex dance, the basic treatment plan, the downhill slide along with mobility, incontinence, degrading of ability to communicate, and the decision making were all very similar.
Ted: One of the first things we did is set up a trust, a living will, and made our end of life choices known to our family and close friends. That is something I think everyone should do regardless of GBM or no GBM.
Linda: I wish we had done that, because Bob thought the rights to all his books would automatically revert to me, and he didn't want to make a will. Heh. Surprise! In Virginia they do not, and now I will need to pay an attorney before I can get his last book published. That, and it will need editing due to the GBM. So, I now have to shell out something like $1200 for editing and God knows how much for an attorney, BUT I will have to pay Bob's agent and then split what we get for the book four ways between me and Bob's three sons. Which I would do anyway, but I'm not rich, and now I will have to pay all the fees myself, which could top $2000, and my cut of the book likely won't come to that much. IF Agent Andy can sell it. So here Bob was crying, making me promise to get his book out, and now I don't think I can afford to. Should have made a will, Buddy...
Tamara Helser: Did all y'all stay on Keppra?
Judy: Yep. But I think it made Dale agitated. He never had seizures.
Linda: Bob was allergic to it, so he got switched to Dilantin, which he hated. He was on a very low dose and said he felt sedated all the time. After about six months with no seizures, The Wonderful Dr. Khan weaned him off of it...much to Bob?s relief and jubilation.
Donna: Yes, Keppra throughout. I believe it was 1000 mg to start then ultimately reduced to 250 mg per day.
Dianna Hamilton: I wish I knew that doing radiation could kill you. My husband went from radiation to hospice and died a month later. They cannot tell me what happened just that it is rare. Death was NEVER mentioned as a possibility and should have been!
Linda: So, Ted, how are you doing now?
Ted: I went for Avastin infusion #48 on December 26. Still using the Novocure device (started May 2012). I do take Keppra 500mg x 2. Only have had 2 seizures both post surgery. First was mild, second one was upon recurrence Halloween 2011. Slowly, very slowly, was able to get off the dex around Feb 2012. Other than Avastin, Novocure and Keppra are my only GBM meds. I try to be active every day, even if it?s just walking my dog, Butters. I work with a personal trainer twice a week at my CrossFit gym. In 2012, I walked a half marathon (the one I was training for the year before when I was diagnosed).
As far as what I can?t do its very limited. I am not supposed to do any exercises where my head is lower then my heart (so I'll never get my hand stand push ups). Scuba diving is out, as is flying in an unpressurized airplane above 5000 feet. Like Cheryl Broyles posted, I get brain fatigue. Physically, I can still hike and walk, just basically about 25% of what I used to be able to do. I just scale back.
(End of follow-up comments.)
(Editor's note: We received word that Ted Hoyt sadly passed away in September 2014, after a three-year fight.)