Ted Abel's Brain Tumor Story (Updated - 08/18/2013):
I was diagnosed with a thumbnail sized brain tumor in August of 1988 after my first focal seizure episode on Jan. 10, 1988 while driving a stick shift Mazda pick-up truck with my wife Debbie as a passenger. My left foot felt numb and I felt as if my left arm and hand had a giant sponge wrapped around it. Needless to say pressing the clutch and shifting gears presented problems. We initially thought I had a stroke, so we went to the closest hospital in Youngstown, OH, was hospitalized, took some tests, had a CT scan, and ruled out a stroke. We ended up being referred to the Cleveland Clinic (CC) where a small brain tumor was located on my right parietal lobe near the surface of my skullcap. This affected my left side and sense of where those extremities or body parts are in space. The original biopsy and pathology report came back with a diagnosis of a benign Oligodendroglioma brain tumor (BT). It was recommended that we observe the BT for awhile with MRI scans, as the tumor was not interfering with my good quality of life. Resection surgery had the possibility of doing more damage, so putting surgery off as long as possible seemed the best route to go at that time.
I then had my first intravenous chemo treatment with CCNU/Vincristine, started taking Tegretol (anti-seizure medication), and was observed w/MRI scans 6 months apart until Dr. Gene H. Barnett, Director of Neurosurgery at the Cleveland Clinic, OH recommended I have tumor resection (craniotomy) surgery on Jan. 11, 1993. I was seizure free and taking no medication, for 10 years thereafter living a fairly normal life, though I was permanently laid off from my Art Director position of 14 years at a commercial offset and screen print business in 1991. I could not prove the reason I was permanently laid off was my brain tumor diagnosis. The company covered all their bases while I was left to fend for myself with my wife taking on the responsibility of being the major breadwinner. I then decided to start my own freelance graphic design business to help pay my business debt and medical bills. I am still trying to make ends meet, and have a select few clients that help me survive. Luckily, my wife Debbie was working as an Audiologist in private practice and was/is a major contributor to our continued on living our lives as best as possible. Though, her practice was being challenged by bad economic conditions in Alliance, OH. Our decision to explore other work opportunities led to an extreme leap of faith move to CA. This was not easy, especially since we had lived most of our lives in OH, had no kids, and were in our early to mid 50's. Late 2004-2005 (between Christmas and New Years) I had a re-occurrence of a much more pronounced focal seizure episode while awakening in the morning. After my Dr. consult at CC I started taking Keppra, a newer anti-seizure med which is much safer for your kidneys, liver and other bodily organs to handle. An oral chemo treatment of low-dose Temodar tabs, in Feb. of 2005, was also tried but did not help shrink or stabilize the BT cells. I also started a new, thankfully brief, high dose Accutane oral dosage treatment protocol in April of 2005 which showed promise clinically, but also did nothing to shrink the tumor cells - actually may have contributed to basal cell growth on my temples and lower right shin, which is now being checked regularly by my Dermatologist here in CA. I was then recommended for radiation therapy treatment, later on, in August of 2005. After my Radiation Therapy I received clean MRI scans which was very encouraging. At that time I was paying $800 a month to Kaiser HMO and we were also in the process of selling our home in OH, because both my wife's Audiology private practice client load, and my clients were decreasing. There were limited opportunities for work in both our fields of experience so my wife found work in CA. That's when we moved to CA. I was finally able to qualify for SSI Disability before our move and was actually backdated for qualification to June of 2004. Hard to believe, I really lucked out there, because most of the stories one hears take an average of 2 years to qualify. I suppose having a brain tumor speeds things up a bit. I then continued on with a fairly good quality of life. It still was a very stressful time for me and my wife, since our home in OH took 9 months to sell with only 1 bid offered, and it almost fell through 2 weeks before our move to CA. Thankfully, our realtor convinced the buyer to reconsider and we closed the deal. At the same time my wife's private practice in Alliance, OH did not sell as we had hoped or planned - actually sold at a loss after our move to CA, with personal debt owed to her vendors, along with my business debt – adding to more stress in CA. We are now left with quite a few unsecured debts unpaid, our credit ruined, and my future medical bills sure to escalate. Welcome to the world of those who have had a medical crisis through no fault of their own doing.
I had a major focal seizure episode re-occurrence on my left side on April 13, 2010 with a longer lasting seizure for about 45 min. Any previous one had lasted 1/2 to 1 min. at the most. The focal seizure was more involved with a zinging/tingling sensation traveling down my left foot & hand and then to my abdomen, ending with my left side face and tongue feeling numb for a few seconds. These types of seizure episodes have a name called the "Jacksonian March" as described by my Neurosurgeon Dr. Bob Carter, UCSD. Associated more with describing a form of epileptic seizure than a brain tumor seizure, though in my case, it is very close to describing my seizure episodes. The seizures afterwards were more frequent and intense, though lasting only 1 to 1/2 minute each. Turns out I had a small lesion occur that day, at least that is what the MRI showed. I then started and completed a 4-1/2 month clinical trial at UCSD, CA - Moores Cancer Center by Neuro-Oncologist Dr. Santosh Kesari. The treatment did not have the effect we were hoping for, though we both suspected it wouldn't. Finally, it was recommended that I have my second resection (craniotomy) surgery in the same right parietal lobe by Dr. Bob Carter, Director Neurosurgery at UCSD on Monday, October 25, 2010 at La Jolla UCSD Thornton Hospital. This time my surgery would be an awake one. That was an experience I will alwaysremember! The amazing thing is I was in and out of the hospital in 2-1/2 days and able to walk 1.5 miles the day after that. WOW! I am so very fortunate to be that rare, but growing, BT patient population who has survived another fender bender while other BT patients have had a train wreck. The pathology report came back very encouraging with no mixing of different tumor cell types and only Anaplastic Oligodendroglioma tumor cells noted - though, my grade II is now a grade III level status. After surgery I participated in a more concentrated radiation therapy treatment for 10 days straight in combination with taking a low-dose (150mg) oral chemo (Temodar) capsules to help stabilize or shrink what tumor cells were left behind that could not be removed. This began on 01/04/11. I continued on with the chemo treatment for 6 weeks ON and 4 weeks OFF. This cycling ON and OFF of treatment protocol would go on for about 1-yr. as my Neuro-Oncologist Dr. Kesari, UC San Diego had recommended for my type of tumor. My low-dose oral Temodar capsule treatment protocol seemed to be stabilizing the remaining BT cells. At least according to my MRI scans at that time.
On May 9, 2011, at the San Diego Brain Tumor Foundation charity golf fund raiser (of all places) I had another more prominent seizure episode while lifting some golf items where my symptoms involved an aura-like sensation on my left peripheral vision and my left hand feeling a little numb, along with my left side face and tongue feeling a little numb. This has happened to me before, though it scared me a bit more, so I immediately contacted Dr. Kesari thinking I was having another lesion occur like the last one in April 2010. He said to kick up my Keppra another pill a day to help settle things down. It did, and I finished my 2nd cycle of chemo shortly afterwards. The middle of May I came down with a hacking cough and head cold that put off my 3rd cycle of chemo. A word of caution, the MRI scans I had on 07/09/11 showed a new, very small contrast-induced enhancement area close to the original BT site. We'll observe it closely for any future changes.
I had a MRI scan (09/09/11) and a Dr. consult (09/15/11) to go over the results of my imaging scan, plus evaluate my medical status. I'll avoid the medical jargon by stating my tumor was stable while still keeping an eye on the small (7mm) area of contrast induced enhancement flare seen on the previous scan, performed in early July. This enhancement area may, or may not, be related to post-surgical treatment changes. A further follow-up MRI scan was again recommended, paying close attention to this suspect area of contrast flare enhancement. I could only hope this area is a post-surgical treatment change (crossed fingers).
As far as my Temodar oral chemo capsule treatment goes, I was temporarily OFF it for about a month, or more, because my blood platelet levels were too low. You don't want to catch any nasty bug floating around while your immune system is compromised. I then started taking my 4th, 6-week ON cycle, Temodar oral chemo capsules beginning 09/10/11. I came OFF chemo on 10/22/11 and my blood draws showed healthy platelet count levels. My platelets looked fine after 11/07/11 so I started my 5th, 6-week ON cycle of taking Temodar that evening. Went through that cycle o.k. With no problems and came OFF Temodar 12/23/11. Enjoyed the holidays starting the new year of 2012 celebrating 24 years of surviving my first seizure episode diagnosis way back on 01/10/1988. Hard to believe!
I began my 6th, and hopefully last, 6-week ON cycle of taking Temodar 01/11/12. I felt I was going to end my treatment with good results. The middle of January, 2012 while watching TV on the couch, I noticed my left hand felt it was going numb. Like it was falling asleep without the tingling one feels when it eventually wakes back up and normal blood flow returns. This numb feeling lasted for about ½ hr. so I knew then something was not right. Immediately afterwards, I experienced a left side peripheral vision aura (sparkling visual sensation going in an arc, up and down, for about a minute. This aura has happened before, so I knew what to expect, but was still not normal. I called my Dr. the next day to see what he recommended. We scheduled an MRI asap to see what was going on. After the scan I was contacted soon after to have a consult with my Neuro-Oncologist and my Neurosurgeon. I knew then I was in for a serious medical discussion involving further surgery. The only problem was my Neurosurgeon was not going to be available until 2 weeks later, after having attended a medical conference in New Orleans. Meanwhile I became more and more debilitated on my left side leg/foot, anxious to get the surgery done, and was put on 4mg Decadron tabs a day. Luckily, my surgery was moved up when another was cancelled (hope it was elective). As soon as the Neurosurgeon got back in town I had my 3rd craniotomy surgery (02/06/12) - under anasthesia - which lasted 3-1/2 hrs. (same as last time). The pathology report came back the same as last time. All good news but still considered anaplastic grade III!
Interesting side note that my Neurosurgeon, Dr. Bob Carter, UCSD had dinner in New Orleans with my original Neurosurgeon, Dr. Gene Barnett at Cleveland Clinic that Friday before my Monday surgery. This all came to light when I talked to Dr. Carter before my surgery. How serendipitous or ironic is that!
The only physical deficits, seen by others then, were my left side balance issues, an unsteady gait, reduced stamina focusing on tasks (especially later in the afternoon) and lower physical energy levels. I usually took a 1/2 to 45 min. nap in the afternoon. I began walking, without help or a cane, in our neighborhood (02/11/12)) for a 1 mile walk. Before surgery I was trying to walk 1-1/2 mi. a day with more and more difficulty. I increased my pace and did longer walks getting up to my usual 1-1/2 mi. walk with a 3 mi. hike coming sometime soon. As soon as I'm weaned off Decadron (steroid) I will get much better, day by day. Looking forward to that day around 03/28/2012!
I am still very lucky because I have full use of my right side and just a slight deficit on my left side, mainly my left leg/foot and arm/hand - where I still cannot exactly sense where it is in space without looking. Not automatic as one normally would sense it. My balance is off a little and I still tire easily. My focus on tasks and daily living is getting better as my ability to adjust to this new normal continues to improve. Life is good!
04/21/12 – Have been consistently walking 3 mi. a day in the mornings since early March. At my Dr. consult on 04/17/12 we reviewed my latest MRI scan which shows a very small highlighted (enhanced) area that will be compared with a new scan in 4 weeks. It is located beside my motor control strip in the original BT location. In the waiting stage again – been there, done that! We also discussed lowering my anti-seizure dosage of Keepra from 6 tabs a day to 4, and now take 3 tabs with no discernible seizures noted post-opt. I still tire easily in the afternoons and persistent dizziness stays with me. May be related to both my anti-seizure meds. Yesterday I began lowering my Vimpat dosage as well, from 4 tabs to 3 tabs per day. No seizure episodes yet – yeah! Crossing my fingers. In March I picked up a sinus infection that has lingered on for about a month now. Seems my immune system finds it harder to fight off bugs going around. Actually, I feel worse now than after surgery. I am finally getting better, just taking a while longer to recover.
We decided to declare Chapter-7 bankruptcy, October 6, 2011 as our income to debt ratio was not sustainable for our daily living. It was finalized May 5, 2012. Our debt was overwhelming. My medical care costs alone with limited SSI disability, medicare and our family and friends financial help was insufficient to pay all our bills and creditors. We are one of those middle class families who was never rich and never had the financial resources to draw on as some others might be able to do. We know we are not the only one's going through this agony. There are many more people who have suffered more than us. We just carry on the best we can.
05/24/12 - Here's the scoop on my post-surgical follow-up consult with my Oncologist Dr. Kesari at UCSD. My recent MRI scans on May 17, 2012 reveal slight tumor growth in my grade 3 Oligodendroglioma tumor cells since my previous MRI scans April 17, 2012, so I was given a couple treatment options. I could begin a phase 1 clinical trial opening in two weeks, developed by Dr. Kesari and administered by IV infusion: Dexanabinol (made with Cremophor in the production process) - along with pre-medications Dexamethasone (8 mg), Ranitidine (50 mg) and Diphenenhydramine (50 mg) also administered by IV to lessen the potential for injection site and allergic reactions...or...see if I was qualified to participate in another clinical trial using tablet pills instead of infusion that is designed mainly for treating GBM. Dr. Kesari said I'm not a good candidate for the later. I would much rather participate in a phase 3 or 4 clinical trial but I am not an ideal candidate for any other available clinical trials - at least none that I know of. Surgery and radiation were not recommended, at this time. So, I will have another MRI scan in 4 weeks to measure the BT growth, if any, and decide what if anything I'm going to do.
06/29/12 - MRI scans on 06/18/2012 showed enhancement flares on 2 separate nodules on the edges of my tumor indicating slight tumor growth, so we discussed treatment options without surgery. We discussed my taking higher dosage Temodar (chemo) capsules 300mg for 5 days on, and then 24 days off. I completed that Temodar treatment protocol and got another MRI on July 20th to see if the tumor cells stabilized, shrunk or increased in size. My BT did increase in size from my previous scan so at my next Dr. consult we'll determine which of 3 clinical trials I may qualify for participation. This seemed like the best alternative action since the phase-I clinical trial I was apprehensive about starting on only has 3 participants who have early results pending. The other 2 clinical trials will be open for enrollment with my next Dr. appt. July 24th so I'll see if either one sounds more promising as well.
Still doing my daily 3 mile early morning walks with slight unsteadiness, especially going up or down steps without handrails - being careful and conscious of where my left foot is kicking off from the ground or when landing going forward. I also have occasional reminders of seizure episodes, like the time we were at the SD Zoo on June16th, after a long walk with Deb and one of her high school girlfriends - visiting for the weekend from her residence in Orange County. My left arm and hand got numb for about 20 minutes and felt like my arm was floating - along with feeling the same numbness (though, more like Novocain numbness) on my left cheek, lips and tongue (near the end of the seizure episode). If you were an observer, you'd never know I was having a seizure episode. I had the same numbness on my left hand/arm when we were out to dinner with friends on 07/17/2012, but had a left eye peripheral vision aura occur beforehand while in their car traveling to the restaurant. That's happened before so I knew immediately my hand an
d arm were going to feel numb soon.
07/27/12 - I had my Dr. consult on 07/24/2012 and decided on participating in the TOCA 511 clinical trial from the Tocagen company based here in San Diego that involves doing a needle biopsy (one day in, the next day out); performing a thorough pathology report on my BT cells gathered; then, as I understand it, implanting a patient cell-specific virus during the biopsy that is then activated by a chemo agent tablet, taken orally a few weeks later on, that is designed to attack and kill only my BT cells - without harming any good cells. I asked my Dr. if the chemo makes one sick and he said it may make one feel tired. If that's all the side effects then I'll take that over feeling nauseated any day. I'll be another one of 12 subjects in the U.S. taking this treatment. A slot opened up on the day of my Dr. consult, so the timing was great. We know one of the participants taking the Tocagen treatment who is in our www.sdbtf.org support group. It doesn't seem to be stabilizing or shrinking her BT growth but there are others taking the treatment who have seen shrinkage. If this doesn't work as hoped, then there are other clinical trial options to be considered. I'll still be a qualified candidate for those other trials so will have to wait and see what happens next.
08/14/12 - I had the needle biopsy on 08/06/12-08/07/12 by neurosurgeon, Dr. Clark Chen, UCSD who did a precise surgical procedure, hitting the targeted BT area on the first try - removing 4 rice grain-sized pieces of my tumor, and the TOCA designed virus inserted - to begin replicating within the tumor. 24 days later I begin taking the chemo tablets which will then activate the TOCA 511 implanted virus to become a killer of my tumor cells. At least that is how I understand it, from a layman's perspective. Recovering at home has been a challenge because I contracted a cold pre-op and was hacking alot while trying to not strain myself. And, my walking is worse, which I expected. Though, the dizziness while walking is harder to deal with. Makes one uneasy taking a shower or walking anywhere. I use my cane more and try to push myself through it. That's all one can do to recover as best one can. The new normal - again!
08/27/12 - Yesterday (08/26/12) morning I started taking one 4mg decadron (steroid) tab and will end the 3rd day (after tomorrow) while tapering down to 1/2 tab (2mg) thereafter. My Dr. recommended taking it after I emailed him stating my walking and dizziness issues were causing anxiety, and the slight seizure episodes were re-occuring. My left hand and arm felt numb, like falling asleep, Saturday evening for about 15 minutes, so I knew from previous experience there is further BT growth, but at least now, my seizure symptoms and dizziness have lessened, and walking is a little bit better. But, I'm still walking aided by a cane. Haven't walked around the hood lately, so that is a little discouraging. The reason I'm having these issues is because I haven't started the full clinical trial treatment yet, as the virus has to have time to infiltrate and replicate inside the BT cell site for 24 days. I'll start taking the TOCA chemo tabs after my MRI scans on the 5th with my Dr. consult on the 6th. With that new MRI baseline we'll see if the 6 day ON chemo + virus treatment protocol shrinks or stabilizes my BT cell growth. We'll just have to see what develops in time. Hoping I don't have too many side effects. The two participants I know here have had some - mainly headaches, but nothing else that I've heard of as yet. I'll take that over nausea any day, as long as the headaches are slight and can be controlled. Crossing fingers.
Our SDBTF support group had a family picnic 08/26/12, so I talked with 2 member families who are also participating in the same TOCA 511 clinical trial with different brain tumors than mine. One was bumped out of the trial and the other may do the same, though for different reasons. Gives one an uneasy feeling but I plug along hoping my BT will respond as the Tocagen co. designed it. The waiting for full treatment to begin is the hardest because you want it started NOW. Patience, I've been told, is one of my virtues so I'm using all I've got.
Here's a more accurate description of the clinical trial I'm participating in based on (long-term survivor) Ben A. Williams (from UCSD) with his last update 10/31/11 to his book...
"The virus-based treatment is Toca 511, which is a gene transfer vector that delivers a specific gene to tumor cells, which induces the tumor cells to make an enzyme named cytosine deaminase (CD). After the vector spreads throughout the tumor, patients receive a course of oral 5-FC, a prodrug of the common chemotherapy agent, 5-FU. The CD gene converts the 5-FC to 5-FU, thus killing the cancer cell. Rodent model data with this approach have been extremely impressive."
09/09/12 - Started taking 7 Tocagen oral chemo tabs (5-FC) - 500 mg each on 09/06/12 at 3:00 p.m. and then took the same dosage at 11:00 p.m., 7:00 a.m. - and continuing onto 3:00 p.m. - for a total timed treatment protocol of 21 tabs per day for 6 days straight. I had no side effects so far except for interrupting sleep getting up at 11:00 p.m., or trying to stay awake until that time. No headaches or anything out of the ordinary. Yohoo! I also started my daily walks in the morning on 09/08/12 and am now up to my 3-miles - using my cane just for stability. Tapering my decadron dosage down to 1mg is going o.k. with no seizure episodes, so far. Saw my Dr. on 09/11/12 to have a blood draw before my 6th day of taking continuous timed 5-FC tabs - measuring my blood levels that are in my body. I'm progressing O.K. with the interaction of the virus and the chemo. Will have to see later how it's going.
09/12/12 - I got through the TOCA 511 first round treatment protocol with minimal side effects. Just a little more tired now with the dizziness and unsteady gait still with me. Had an intestinal tract irritation immediately after ending the first round of taking the chemo tabs, though nothing to worry about. Just a little diarrhea for a couple days. Had a slight left foot/lower leg seizure episode a couple days ago while walking - only lasted about a minute, but occurred 2 days straight. Was near the time I usually take my anti-seizure meds so was not overly concerned. Haven't had any seizures since. Am walking around the hood, with cane, for 3 miles in the morning. Trying to get used to my new normal, again!
09/17/12 - Yesterday afternoon and this morning I experienced some diarrhea symptoms. This could be the side effects related to the Tocagen chemo tabs or implanted virus. I don't think it is food poisoning, as both Deb & I have eaten the same foods without Deb having problems. I am drinking plenty of fluids, avoiding coffee and fresh fruits. I ate some yogurt and drank green tea this morning. I still have the immodium if I need it.
Other things, I've noticed today is a little more progression of a general tiredness and balance-dizziness issues, with increased left hand/arm weakness or, motor-control problems, sensing where those body part extremities are in space. Still taking my daily early morning walks (1-2 miles) around the hood without a left foot/leg seizure occurring today.
09/22/12 - Participated in the 2nd Annual "Take A Step to Support SDBTF 5K & Fun Walk" at NTC Liberty Station, Point Loma, San Diego, CA, walking with one of my team members, Martina Herman, from a networking group (North County Referrals), we both belong to. Deb couldn't be there since she was out of town giving her first keynote address, and presentations in various state affiliated American Academy of Audiology annual conferences. She was away for 1-1/2 weeks. The Walk was a hot, humid day with lots of participating teams and individuals I've never seen before. Great turnout! Big shoutout to Renee and Chuck Richey - plus Connie and Sara, and of course to all the volunteers who helped make it all come together for a successful fundraising event. Looking forward to more participants next year!
Was hopefull to start the next round of 6 consecutive days on the chemo tabs (18 total tabs ea. day) on October 6th, and then MRI scans October 30th. The scans will show what's happened, if anything, to the BT cells since beginning this new Toca 511 clinical trial treatment protocol. Hoping the scans show shrinkage or stable (progression-free). Crossing fingers!
09/26/12 - I had some recent seizure episodes beginning with my usual peripheral vision auras (sparkling small clusters of twinkling dots in a thin arc from left to right and back). Seems scary but does not impair my visual field perception. I do not black out or lose my sense of where I'm at or where I'm going. Usually lasts about 15-20 minutes. Immediately afterwards, my left hand/ fingers/arm/foot/leg motor control issues might begin occurring - mainly tingling in fingers and hand, with left side upper torso and shoulder numb-like feeling, plus an unsteady gait and balance issues while standing or walking. Sometimes my left side neck and face feel numb as well with tongue involved - as one would experience with a novacain injection. That may last about 15-30 min. My Dr. recommended I up my dosage on one of my anti-seizure meds (Vimpat), to try and control those symptoms. So far, so good.
10/04/12 - Dr. consult. Because of my recent seizure symptoms, my neuro-oncologist recommended upping the date that I have MRI scans, to Oct. 5th, before starting my 2nd round of Toca 511 oral chemo tabs. I expect no side effects from the chemo so am not anxious or apprehensive about that part of the treatment. From past seizure symptom experience, it seems highly likely there is slight tumor cell growth. It is what it is and will be what it will be.
10/06/12 - My neuro-oncologist reviewed my MRI scans and noted there had been slight tumor cell growth, compared to my most recent previous scans. That confirmed my similar suspicions. I'll continue taking 2mg decadron tabs 2 times daily and taper down the dosage, if recommended - or seizure symptoms seem to be under control - one day at a time.
10/06/12 - I began taking 6 (3,000 mg ea.) Tocagen 511 oral chemo tabs...continuing the total dosage of 18 tabs per day cycle, 8 hrs. apart for 6 consecutive days. Then OFF for 24 days. Back to walking round the hood, 3 miles in the early morning - that's the steroid (decadron) talking!
10/11/12 - Started second round Tocagen 511 treatment protocol, ending on 10/11/12 with no side effects. Noticing a little more balance and dizziness issues. Might be a combination of meds and BT cell growth. Next MRI scans will show if there is any shrinkage or stabilization of BT cell growth. I'm continuing to take 2mg Decadron tabs, now 2-times per day and walking around the hood w/cane about 2-1/2 to 3 miles in the early morning.
10/31/12 - MRI scans at UCSD Moores Cancer Center
11/01/12 - Dr. appt. with MRI scans reviewed. Scans show slightly more growth. Just as I suspected, based on my symptoms. I am no longer participating in the Toca 511 clinical trial because it was not shrinking or stabilizing my BT cell growth. My case was discussed at the UCSD brain tumor board on 11/02/12 and their recommendations will be relayed to me asap.
11/04/12 - Talked with my UCSD neuro-oncologist Dr. Kesari to discuss further treatment options going forward. Since I am noted as such a good healer by everyone here, myself included, we are open to further resection surgery (would be my 4th). That is, if my neurosurgeon agrees. I'll have a consult with my UCSD neurosurgeon, Dr. Carter in the coming weeks to plan for future surgery, if needed. The UCSD BT Board recommended, along with Dr. Kesari, that I first start chemotherapy (Carboplatinum), 1 cycle infusion, then have MRI scans 4 weeks afterwards to see its effectiveness. I've never had this older chemotherapy treatment, so If growth progression continues, then a 4th surgery is not out of the question. Otherwise, As scheduled, I'll begin the first cycle of a 2-hr. infusion treatment, starting Friday, Nov. 9th at 12:30 p.m. at Hillcrest UCSD, and hope for BT cell shrinkage, or stablility of BT cell growth. I'll find out more details about the infusion process and timing when my case manager at UCSD contacts me this week. In the meantime, UCSD researchers will do various tests on my BT cell tissue pathology for specific biomarkers for other open clinical trials that I might be a good candidate for participation.
In addition, of note, Ben Williams wrote a book about surviving cancer and a brain tumor diagnosis. He lives here in San Diego, CA, and teaches or is employed by UCSD. Ben is a long-term BT survivor as well, and has stated, "Carboplatin has been used quite a bit with brain tumors, but has a number of drawbacks. It can cause serious nausea and vomiting, diarrhea, fatigue and reduced red blood cell counts, so one should be sure and take anti-emetics. It can also cause occasional hearing and kidney problems. Its track record with GBM, grade-4 has been mixed, as it often produces a high rate of tumor regression but it doesn't last long (he didn't know about the effect on lower-grade tumors, like mine, which is now a grade-3). The likely reason for initial shrinkage is that Carboplatin doesn't pass the intact blood-brain-barrier, but because tumors have a blood-brain barrier that is partially disrupted, it reaches some - but not all of the tumor. This might be a case where the ED drugs like viagra could be very useful." I'll certainly discuss this with my case manager - viagra's possible positive effect on getting past the blood-brain barrier through this infusion treatment - before infusion begins. I hope to hear the advantages, if any, there are in taking such ED drugs. Hell, this might just be the ticket to a more satisfying sex life - oh let's not go there!
After talking with several BT patients here, who've gone through the same infusion treatment, their experiences were not all that bad. Just left them fatigued about 3-5 days later. Probably from the reduced red blood cell counts. We'll see what my case manager has to say about other patients' experiences.
11/09/12 - Started 1 Carboplatin infusion treatment administered after a 1/2 hour wait while taking 8mg decadron (steroid) and a new anti-nausea med Kitrill. Felt fine the whole time, pre- and post-infusion, with no ill side effects. Drank lots of water during and after the infusion to flush out my kidneys and avoid any major organ damage. That may have been why I did so well. I was amazed and surprised to say the least. The whole process took about 4 hours with an initial wait time of 1-1/2 hrs. for blood analysis to make sure I was given the proper dosages. The next several days I felt a little more tired but nothing out of the ordinary. I did notice the beginnings of constipation a couple days afterwards, so I started taking cholace (stool softener) once again and that seemed to help clear it up.
11/10/12 - Had my 1st cycle carboplatin (chemo) infusion treatment yesterday afternoon. From evaluating my blood, to finishing the infusion, the timing was about 3-hrs. They first started me on 8mg decadron (steroid) and a new Kitril med, which is a newer anti-nausea drug, about 1/2 hr. before the drip began. Kitril can have minor and/or major side-effects. Fortunately, for me, I had neither. I eventually sat back in their easy chair, put my legs up, read the newspaper & professional magazine journals, talked with some of the nurses and techs, listened to comments other patients were making towards their TV's and then dozed, off and on, for a couple hrs. Deb sat by my side in a chair throughout, doing some work-related stuff, and reading. I never really felt any of the meds the entire time, except for the coolness in my arm - in the beginning - where they stuck the needle in my arm, and the fluids began coursing through my veins. Drank plenty of water throughout the treatment so my kidneys and other organs, would not become compromised, and continued drinking plenty of water, as recommended, until long after dinner that evening. Never felt nauseated at all before, during and after last night - even today. Let's just say I was surprised and elated, to say the least!
11/15/12 - Consult with Tiffany Brown, Dr. Kesari's PA, going over Carboplatin treatment experience and MRI scans radiology report. Noted there was mention of possible necrosis in the report, but not definitive. Scheduled a consult with Dr. Carter to discuss surgical options, if even possible.
11/18/12 - Recovering o.k. from the carboplatin infusion treatment, at least as far as I can tell. Noticed a bruise yesterday at the needle site on my right arm and where my most recent blood draw was taken. Blood levels, taken weekly, have been fairly good, but I do tire easily after a 1-2 mile walk in the mornings, or other limited physical activity throughout the day. I'm usually taking a 1/2 hr. nap in the afternoons, if I'm home, or when I feel the need. Last week I had a couple minor focal (sensory) seizures in my left foot, though very short in duration, in the early morning. I've also had times of slight tingling and sensory loss in my left hand/arm/shoulder at various times throughout the day, which are uncomfortable or just an irritation, but not long lasting. Always reminds me I've got to stay on top of my treatment plans and pay attention to any unusual symptoms or the usual culprits. It's easy to get lulled into thinking one is back to normal when you really know deep down you're not. I guess that's a good defensive mechanism we all have within us - keeping one out of depression or the doldrums, which never does one any good anyways. Always trying to stay one step ahead.
Previously, I was taking 2mg decadron per day, but 2 days ago I reduced it to 1-mg - to see if I didn't need to take as much. So far, I've not noticed any increased changes in my balance issues or dizziness while standing or walking, and no seizure activity. I continue using a cane while walking about - mostly outside - and take daily early morning walks around the hood from 1-2 miles each. Now, the tiredness seems to be waning a bit. Hoping that's a good sign. Will keep you posted.
11/28/12 - I had a consult with my neurosurgeon Tuesday morning (11/27/12) discussing the possibility of surgery - recommended as one option by the UCSD brain tumor board. This consult was scheduled because my last MRI radiology report mentions possible necrosis forming which could be causing more left side balance/dizziness symptoms as it swells and bumps up against my motor control strip. You also don't want to cut into your brain too many times - more potential problems to deal with during surgery, and post-op. My neurosurgeon is hesitant to do another surgery because the danger of causing left side paralysis or more deficits would affect my quality of life as I now live it. I'm glad he is not cut happy and takes a more compassionate, conservative approach with an honest Dr./patient discussion - positive and negative. The patient can then make the best informed decision for their unique medical circumstances.
When I first had radiation treatment in 2005 in OH it was noted as only a 1-time protocol treatment because of the danger of necrosis occurring in the area of treatment afterwards - too much radiation was considered problematic. When it was suggested as an option here at UCSD in early January of 2010, I was hesitant to participate because of that earlier info. I felt this fractionated radiation would be a fairly safe procedure and thus be more precise than previous radiation targeting while avoiding damaging the good brain cells, though that was never stated as a certainty. Radiation injury occurs in a certain proportion of patients. Difficulties in differentiating recurrence from radiation injury complicate the treatment course and can compromise care. These complexities are compounded by the recent distinction of two types of radiation injury: pseudoprogression and radiation necrosis, which are likely the result of radiation injury to the tumor and normal tissue, respectively. A thorough understanding of radiation-induced injury offers insights to guide further therapies.
We'll all know more after my next MRI scans on December 7th. The UCSD tumor board will meet after Noon that day so I'll probably know their recommendations sometime afterwards.
I don't yet know if the (1) carboplatin infusion treatment worked for me, or not. I did have 1 seizure episode, an abdominal muscle-spasm that lasted for about one minute last week. Very noticeable to anyone sitting or standing next to me. I've had that happen previously, before my previous 2 surgeries. Most likely caused by reducing my Decadron dosage from 2mg to 1mg per day which probably caused some swelling to increase a bit. So, I increased the dosage back up to 2mg per day. Seems to have settled things down. Though, now I'm a little jumpy, short tempered, gaining a little weight and sleeping less soundly. Steroids do that to you. That's their negative impact. Been there, done that, and don't like to stay on it for long.
My next MRI scans are scheduled for early morning Dec. 7th. Those scans will hopefully reveal a more definitive analysis for recommended treatment action going forward. At least there are still more options available as well, like another round of Toca 511 treatment, another round of carboplatin infusion treatment (if the first one was successful in shrinking or stabilizing BT cell growth), new immunotherapy clinical trial treatments, other clinical trials better suited to my specific BT tissue biomarkers - determined with various testing performed on my most recent BT tissue pathology, and other options that are unknown to me at this moment. Crossing fingers again while still taking my 1-2 mile walks around the hood in the early morning hours.
11/31/2012 - MRI scans performed and reviewed by radiologist and their brain tumor board the upcoming Friday afternoon.
12/18/2012 - Neuro oncology Dr. emailed me with comments that my "MRI scans show the BT cells are now stable, so I will most likely continue chemo (carboplatin) treatment, with a planned regimen of infusion performed every 28 days, each one lasting from 2-3 hrs. - depending on how long it takes for the blood work analysis to be completed before the infusion process begins. Will take reading material and watch a little TV, plus take a nap while there.
DR.'s IMPRESSION: No change since previous MRI scans of the brain dated 10/31/12. No MR finding to suggest enlarging residual or recurrent tumor. Radiation injury occurs in a certain proportion of patients. Difficulties in differentiating recurrence from radiation injury complicate the treatment course and can compromise care. These complexities are compounded by the recent distinction of two types of radiation injury: pseudoprogression and radiation necrosis, which are likely the result of radiation injury to the tumor and normal tissue, respectively. (I've had radiation treatment two times - first in July of 2005 and second in January of 2011) so the injury comments mentioned above are most likely related to more than one radiation treatment protocol. A thorough understanding of radiation-induced injury offers insights to guide further therapies.
12/20/2012 - Compared my previous, and new, MRI scans at the Neuro oncology Dr. consult. Discussed best treatment plan going forward. No change in BT cell growth from last MRI scans (YES!!!). I'm scheduled to begin another 2nd round of carboplatin infusion treatment on Friday (12/28/2012) with succeeding infusion treatments continuing on after 28 days OFF (4 weeks). We'll see if things remain stable with MRI scans, reviewed after each infusion treatment, and go on from there. Don't know how many rounds I'll go through until we see how things progress. I'm hoping I have similar minimal side effects from the carboplatin treatment as I had before. We'll have to wait and see.
Continuing on with my daily early morning walks of 2-3 miles distance. Balance issues and dizziness are still a problem, but some days are much less so. If that's all there is I count that as a blessing.
12/28/2012 - Started my 2nd round Carboplatin infusion treatment in the early morning at Hillcrest UCSD. First, they did a blood draw to see if everything checked out o.k. Then I was given a liquid drip 10mg Decadron (steroid), in combination with Kitrill (anti-nausea), 1/2 hr. before starting the liquid drip Carboplatin. I sat back in the easy chair, read the morning paper, along with some magazines, and looked out the window to the south across Mission Valley. Was a beautiful day. Deb, however, sat in a padded straight-back chair beside me, checking off her goals for the day and making the best of her uncomfortable chair situation. She's always been there when I needed her and this time was no different. Eventually I dozed off but kept drinking plenty of water to help flush my kidneys of the chemo and prevent the possibility of damage. From beginning to end it took about 3 hrs. Again, I had little reaction or side effects to the infusion. Yeah!
12/30/2012-12/31/2012 - One thing I always forget to begin taking is Cholace - to prevent constipation. And sure enough, that began to happen. With this kind of chemo, in combination with my other meds, constipation is one BIG side effect for me. This chemo also makes me feel bloated and not hungry. Yet, when I start eating, I feel much better, as I would normally. If I miss a meal, or don't eat normally, I feel a little nauseated, so I have to remain cognizant of that interaction to keep my body in sync. I know it sounds counterintuitive, but that's how it is. So far, I've not gotten physically sick, just a bloated feeling with unsteady gait. In the next couple days we'll have to see if that continues to be the case, as it was for me the first infusion. Crossing fingers here. Another thing is one begins to feel fatigued or tired, so naps during the day are a given. But, that leads to restless nights. I'll take that because it could be a whole lot worse!
Continuing with my daily early morning walks, around the hood, of 1-2 miles distance. Balance issues and dizziness while walking is still a problem. Seems a little worse as time goes by.
01/02/2013-01/03/2013 - Well, I spoke too soon about feeling exactly the same after my first infusion go-round. On the mornings of the 4th and 5th day, after infusion I felt really out of it. Should have started taking Cholace the night of the infusion to prevent constipation. I certainly had that. Felt jumpy in the early mornings with a slight seizure episode in my left foot/leg while standing by our kitchen sink window. Only lasted a minute or less. Also felt a pulsing pressure in both eyes and head, so just took it easy sitting on the couch for awhile. Didn't get physically sick or throw up. Felt much better awhile later. I felt so crappy (pun intended) all day that I didn't take my early morning walk. Instead I took a late afternoon walk to see if I could do it. It was a struggle, but I did walk about 1 mile. Took a couple naps during that day and answered/sent several emails. Kind of a wasted day, yet did schedule my next Neuro Oncologist (NO) Dr. consultation appt. for Thursday 01/10/2013.
01/10/2013 was my 25th Anniversary of my first seizure episode! Debbie helped us all celebrate with a champagne toast to good health and happiness, surviving another day - giving one hope for more tomorrows. I also had my UCSD neuro-oncologist (NO) Dr. Kesari consult with our discussion centering on continuing another round of carboplatin infusion treatment, with MRI scans performed each month to see if this treatment is shrinking or stabilizing the BT cells - or not doing what we had envisioned it doing. I'll continue my monthly infusions for 6 months or more, dependent on my blood cell counts remaining good. We also talked about vaccine and etherapy clinical trials if the carboplatin infusions are unsuccessful in stabilizing my BT cell growth. There are still options if one or the other treatment doesn't work. That's as good as it gets. Still walking around the hood in the early morning hrs. for 1-2 miles. What a great place to do it!
My walking around the hood and inside is becoming a little more unsteady. Will up my dosage of decadron to 3mg - as recommended by my NO Dr. - to see if that will help. Sometimes the swelling that occurs after infusion treatment can be better managed by upping the steroid dosage and then lowering it after a period of time. I just have to closely monitor my symptoms with close consultation from my NO Dr. Will have to wait and see. The other evening after dinner I had an abdominal seizure episode that looked and feels like a muscle spasm but is involuntary. Deb was able to witness it all. Kind of creepy but no pain. Lasted about 1-1/2 minute.
01/25/2013 - Dizziness continues to plague my walking with an unsteady gait, left foot numbness and left arm/hand sense of where they are in space with occasional numbness. Seems to be getting progressively worse though it is mostly an irritant. I also have to consciously lift my left foot toes as I kick off from them moving forward. On carpet, or uneven surfaces, one can easily get your toes curled under and dragged behind, making it easy to stumble. Have to be extra careful while showering. Haven't fallen as yet, but I've just been lucky so far. Still taking 3mg decadron dosage each day - taking 2mg when I awake, and then 1mg about 2 pm. My eyes feel like they're bulging but I know it's just the pressure from the steroids effect. Haven't had any breakout seizure episodes lately but I've felt them come close to doing so. Taking same dosage Keppra and Vimpat anti-seizure meds. Hoping I'll be better equipped this next go round to deal with the days after my infusion by taking Cholace soon after and watching out for the expected 3rd thru 5th day crappy feeling. Didn't walk around the hood today, raining makes the blacktop a little slippery. Don't want to chance falling and breaking a bone or worse.
01/28/2013 - Had MRI scans. Report showed stable results - noting nodular enhancement on the outer margins is unchanged in appearance from the previous MRI scans YEAH! They'll be closely watched for any changes next MRI. Whether it's the positive effects of the carboplatin infusion treatment doing its thing (stabilizing growth), or something else, we just don't know yet. Next MRI scans will determine if everything is still stable. Crossing fingers, again!
01/31/2013 - Had my 3rd carboplatin (chemo) infusion treatment with Deb again sitting by my side. She's a trooper and I'm one lucky guy to have found a true love who's never abandoned me when the going gets rough. Not to say we've not had our moments. I have these 4-hr. treatments every 28 days - will continue for 6 cycles if successful. I'm now at the halfway point. Each treatment has been fairly uneventful without the nausea - just a bloated feeling afterwards. Keeping fully hydrated, drinking lots of water, prevents damage to the kidneys and seems to be working well for me. My appetite is o.k. but that's because the steroids are at work there. Gotta be careful eating too much junk food as the effects of steroids can lead one down that road very quickly. Fatigue and tiredness follows the next day. On about the 4th and 5th day I'm expecting the same crappy feeling I felt the last time. Hopefully, I'm more prepared this time around to deal with constipation by starting Cholace (stool softener) earlier. I began taking it the day before treatment this time and will continue until i notice the change to more back to normal. There's that juggling meds again. All based on my individual experience - not everyone elses.
02/04/2013 - I'm still walking with a cane and doing my walks in the early mornings around our hood for about 1-2 miles each day. I can do that very easily here since there's no ice or snow to get in the way to slip or fall - just an occasional rainy wet surface, while it's winter here - prevents me from walking a great distance outside some days. The occasional steep grade of the hills surrounding us does not hinder my walking the pavement either. Actually, gives one a good cardiovascular workout with great canyon views, instead of sitting here tickety-tapping away on this old computer keyboard. Beats being cooped up inside as I recall some of those severe Ohio winters we've had the pleasure to endure, NOT! No thanks, I'll take these winters any day! At least I can safely walk outside.
My dizziness continues to be a problem so I'm now taking less dosage of the anti-seizure med Vimpat, but the same dosage of Keppra, and keeping the decadron (steroid) dosage to 2mg per day to help reduce any possible swelling from those suspect nodules present on the margins of my original BT site which could all be contributing factors to my dizziness or equilibrium problem. Both anti-seizure meds are noted to cause dizziness and does stop my seizure episodes. Cannot get one without the other. There is a choice, but having dizziness or seizure episodes are not what I'd consider good choices. Trying to determine which one's are the main cause is my focus now. May be a combination of one or the other, or all of them. It's just a balance trying to juggle what meds work best for each individual every day for a good quality of life. Taking less Vimpat had no effect on me except to increase the onset of seizure activity so I went back up to my original dosage. Have to pay attention to old and new symptoms and stay in close consultation with the Dr.'s. It's been working for me now, and for over 25 years!
02/07/2013 – Dr. Piccioni, neuro-oncologist (NO) and assistant Tiffany consulted at Moores Cancer Center, UCSD La Jolla, CA. We discussed MRI scans report, treatment progress, old/new symptoms, and meds adjustment to reduce equilibrium and balance problem. Recommended reducing decadron dosage to 1-1/2 mg to see if seizure episodes stay in check and dizziness decreases. Tried that for a couple days but seizure activity seemed to increase, so went back on 2 mg decadron dosage. Dizziness and equilibrium problems are staying the same so am thinking it's the carboplatin infusion treatment or something pressing up against my motor control strip. My description of having daily fatigue and general lethargy led to a suggestion of adding ritalin to my meds. Will discuss this later if I feel the need. I certainly hope not, as I don't want any more meds added to my daily routine. Walking around the hood for 1/4-1/2 or 1 mile varies, depending on my feeling that day. Afterwards, I usually lay down for a few minutes. My walking is also clumsy as I seem to clump along being ever so carefull about any pains or twists to my ankles, knees and hips. So far so good!
02/18/2013 - Feeling a little better this day. Yesterday was not so good. Still dizzy with slight left hand/arm focal seizure-like feeling (not knowing exactly where left side extremities are in space) as if these extremities just awoke after falling asleep with blood flow returning and a slight tingling sensation - not constant. Mostly an irritant at times while I'm grabbing things with my left hand or setting my left arm down onto something - like on my computer keyboard or a table while eating, or resting my arm on the arm of a chair. I have to be careful while getting up or moving things at the table with this weird sensation. It can be easy for me to spill or over/under shoot where an item or plate is when I want to grasp or move it - without looking. I've also noted more difficulty walking with a clumsy gait clumping along with my left foot.
02/19/2013 - Adjusting meds to try and work on helping my equilibrium and balance issues is a guessing game. I'm keeping on top of it while not letting it consume my daily thoughts. My energy level is o.k. and I'm grateful it's not worse. The fatigue and general lethargy is concerning, along with my increased feeling of anxiety. Started taking 1 mg decadron dosage per day, instead of 2 mg, a couple days ago to see if equilibrium and balance issues persist. So far it's staying the same but with no seizure episodes. YEAH! I started taking 2 Vimpat pills today later in the morning at 9 am instead of the same time I take 2 Keppra pills when I get up at 5 or 6 am. Seeing if both taken together are causing my equilibrium problems. I'll take the rest of my 2 Vimpat pills around dinnertime to see if that evens things out and helps steady my equilibrium. I'll keep taking my Keppra pills at the same times. So far so good!
Talked with my NO today to see if my carboplatin infusion treatments may be causing my continuing equilibrium problem or something else swelling or pressing up against my motor control strip. He said most likely not. Nothing yet seems to be the answer.
Remember...It's not what they take away from you that counts - it's what you do with what you have left.
Why worry about yesterday?. It's gone. Why worry about tomorrow? We might not be around. Just concentrate on making today a good day.
Sincerely, Ted Abel
03/21/2013 - MRI scans show no discernible growth of BT cells, though the radiologist report had not yet been fully completed on this visit. I really don't feel any better and my symptoms seem to be getting a little bit worse, so I don't know if this treatment is helping out, or not. I'll up my dosage of decadron to 5 mg. on Saturday to see if it it helps shrink some swelling of a possible cyst, edema or necrosis that shows up in a diffuse area of the scans near my original BT site. May be the major/minor cause of my left side motor control disruption issues. Gaining more weight goes along with upping dosage. My weight is now 195 lbs. - used to be 176 lbs. I know some of you would welcome my weight at a height of 5 ft. 10-3/4 in., but any extra weight gain is not good. Another (5th) round of carboplatin infusion treatment, beginning next week on Thursday afternoon was recommended. Ugh! Hoped to not go through that crappy bloated feeling again, but if it is stabilizing growth, then that is the best course of action. I'm hoping I'll be better prepared this time around with all the proper meds, taken at the right time to combat any adverse side-effects. On this visit, we also found out my BT cells were finally sequenced by 3 genomic labs and I am awaiting the report emailed to me so I can understand it more fully. This report may provide a course of action for new or existing treatments that are better suited to my specific type of BT. My NO seemed perplexed by the report noting that one of the clinical trials I participated in showed no benefit, even though my BT cells should have reacted to its notch inhibitor status. I also noted yesterday in the UT paper where there is serious discussion on-going about the perceived value of sequencing one's BT genome. Does it really advance our knowledge of brain tumors and how to treat them? Is it better to focus on their chemistry makeup? Seem open questions that remain unsolved. One day at a time - onward!
03/26/2013 - I decided to walk a little further around the hood this day, just to see if I could extend my walks for better cardio conditioning. Well, that didn't turn out to be such a good idea. Walking down St. Andrews hill, I seemed to have a slight focal seizure episode on my left foot, or I lost touch with my left foot extremity which surprised me, since I'd not had a focal seizure episode for quite some time now. My foot did a slight pulsing-like motion which I had in the past.......just stopped walking, leaned onto my right foot and steadied myself with my cane. I guess I was traveling too fast to stop, so I stepped to my left onto the golf course grass and tried stopping again. Too late, I was going almost face down and onto my left side. At least I was off the blacktop. Whew! But, then again, I fell onto my left side kinda onto my left side face with my left hand/arm trying mightily to reduce my momentum. Luckily, I did not cut, scrape, bruise or break any bones, just a little pride. That'll teach me to slow down and take those steps one at a time. There's no hurry.
03/28/2013 - Carboplatin infusion treatment today. The 5th one and counting to the sixth treatment at the end of April. Saw both NO's today and discussed next MRI scans scheduling, timing for next consult, and further treatment action if things change or stay the same. My doctor suggested trying some supplements along with my other meds that show some promise shrinking my specific type of BT cells, especially my dropped bio-marker. This was discussed while he made a social call during my infusion. I said yes and they'll be shipped here free of charge. There's another kind that costs some $ but it may not be as good. We'll see where this leads. Anything that effectively slows the growth of my BT cells is worth a shot.
03/31/2013 - The last two days I've been a slug - I figured as much. Meds began working on easing constipation which has given me relief. Those meds are working like I had hoped! Tried walking around the hood for about 1/3 mile and returned winded, but no falls or seizures! Took it easy both days. We went out to dinner with a friend Saturday and had a great time. My appetite is good with no nausea. Thank God! My equilibrium is still off balance and it concerns me as it gets worse throughout the day and later on into the evening.The fatigue is another matter, as that comes with the territory. I gotta be careful when looking side to side or up and down too quickly. I've noticed that's when I get into trouble.
04/15/2013 - Haven't updated my treatment and doctor visits in awhile because I've been slowly recovering from my last infusion treatment. Deb had been away working at her professional organization's (AAA)convention in Anaheim, CA and then was immediately off to her annual visit to Durham, NC attending the Full Frame Film Festival (FFFF) - vacationing with her three best HS girlfriends and several others who have been instrumental in FFFF's success. Deb really needed to get away and decompress, especially dealing with my condition 24/7. I know it's hard on her as I try my best to make our lives as normal as I can. While Deb was away, I was kept busy by being invited out to dinner by neighbors, friends took me on errands, and my old 1993 Honda Civic had a flat tire - luckily in our parking bay and am thankful for the other AAA. I did OK on my own while upping my decadron (steroid) dosage to 4 mg. the other day to see if this helps me feel better. Seems to have done so. Though, if you see me walk, get in or out of a vehicle, and navigate stairs, you'd realize very soon it cannot be easy for me to get around. I sometimes sound like Frankenstein clumping about with a cane and have to focus more on the little motor control functions that were automatic before. It tires one's mind and your body movements just having to do so, especially later on in the evening. Sitting for long periods of time doesn't help either as your muscle tone withers. But, when standing or walking while one's equilibrium and balance is off on the left side causes one to not want to move around too much. I don't want to twist an ankle, hurt my back, catch my arm on something that causes a bruise or cut. It's happened before so it is like a Catch 22! That's where anxiety can set in and/or the meds play a similar role in heightening one's anxieties. Time to take a nap when this occurs or just take it easy. Again, no seizures but no walk around the hood either!
This morning, I started taking some recommended supplements that are considered helpful for my type of BT:
- Start oxaloacetate (OA): http://www.benagene.com/
- start 5 pills/day with food, watch for acid reflux or other side effects
- after 1 week increase to 10 pills/day then
- after 1 week increase to 15 pills/day then
- after 1 week increase to 20 pills/day then
- after 1 week increase to 25 pills/day then
- after 1 week increase to 30 pills/day then
- Start methylfolate 1 tab daily as well
04/16/2013 - Had a better day without any side effects from taking the supplements. Walked around the hood this morning for about 1/4 mile. Again, no seizures!
04/17/2013 - Walked around the hood this morning for about 1/2 mile. Probably shouldn't have as I was really winded and wobbly at the end. Again, no seizures as of this moment but no walk around the hood either!
04/19/2013 - Had MRI scans in the afternoon, then picked up my brother (one of 6 siblings) and his wife - accompanying my 93-year-young mom on a flight from North Canton, Ohio to SD (Poway, CA) for a 4 day visit. Hadn't seen either of them for about 2 years! Great seeing them all!!!
04/20/2013 - Had brunch at Cafe Merlot on the Bernardo Winery grounds with Deb, my mom, brother and his wife for a leisurely afternoon of culinary delights. Afterwards we piled back into the Escape and went to Trader Joes to get goodies and then back to our condo for dinner prep. No solid plans, just a relaxing day of making our day as easy as can be.
04/21/2013 - Had a late breakfast at Pacifica Breeze in Del Mar Sunday morning then parked ourselves on the grass by the beach next to Jakes restaurant watching surfers and paddleboarders ply the ocean waters and enjoyed watching families walking by. Was a little chilly with a slight marine layer but the sun finally broke through with clearing skies about noon. Again, no seizures but no walk around the hood either!! Mom enjoyed herself by the ocean, especially the surfers coming in with the waves. Later on, we drove to Torrey Pines beach/cliffs and then down to La Jolla. Deb drove us up Hillside Dr. for stunning views of the ocean, caves and entire cove up on high. Afterwards we had a late lunch at the newly renovated Eddie V's in downtown La Jolla. Great views looking down into the cove/caves with great food. Now, one of our new favorite restaurants!
04/22/2013 - Everyone is leaving today so no time to waste. Tears were shed but we were all happy to see one another sharing memories, present moments and plans for the future. Could have lasted another day - maybe next time!
04/23/2013 - Doctor apppointment today. Discussed most recent MRI scans report while comparing previous and most recent MRI film scans. Slight slow-growth progression noted in areas we suspected, but ever so slight. Decided to have my 6th round of carboplatin infusion treatment and then MRI scans every month. Will see if there are any changes generated by the supplements I've just begun to ingest progressively in their weekly dosage amounts. Discussed more detailed information on my recent BT cell gene sequencing. Seems my BT cell mutations that enabled BT growth were ID #1, Notch #1 and RB #1. Will hopefully help in further treatments as they now know which treatments might be best suited for my type of BT. We also discussed all the past treatments I had, mostly at the Cleveland Clinic. Initial chemotherapy infusion treatments I had then were CCNU and Vincristine. A low dosage Temodar chemo tablet was recommended in 2005 as the best treatment plan for my type of BT. I also began taking Accutane tablets in April, 2005 as it was first being recommended as a treatment protocol for slow growing BT's, such as mine. Didn't really do anything at that time. My BT cells still grew, ever so slightly. Again, no seizure episodes, but no walk around the hood either!
04/24/2013 - Had my 6th carboplatin infusion treatment early morning with no side effects except having to empty my bladder because drinking lots of water is r
04/25-26/2013 - Well, I guess I talked too soon the other day about feeling good. The 2nd thru the 5th day after infusion treatment is when it hits you the hardest. Feel like a slug, constipated, lethargic and exhausted while doing nothing. You just want to rest or sleep all day. Not a pretty picture or good quality of life. These next couple days will the hardest, but once you're through it you feel a little better. Not quite like your old self, but no constipation........can't wait!! Again, no seizure episodes but no walk around the hood either!!
04/28/2013 - Had a toss-n-turn night last evening - just beginning to start the climb out of this ugly fog. Most likely tonight I hope to feel better. Time will tell. My appetite is returning to somewhat normal, but still not very hungry when I should be. Gotta get into a better eating regimen to even things out. Still feeling crappy and weak. Again, no seizure episodes but no walk around the hood either!
04/30/2013 - Supplements are causing me acid reflux and flush face problems so I've cut back on the daily dosages. Talked it over with both doctors, so will see what the next MRI scans show next week. My symptoms: trouble walking, anxiety, weakness on left side involving arm/hand/foot/leg tells me there is more progression so I won't be surprised if there's more growth. Managing to hang in there as best I can. Again, no seizure episodes but no walking around the hood either!!
05/07/2013 - Doctor consult. Discussed my weakness on left side - especially leg/foot, hand/arm sensory problem, and possible clinical trial open spot I might be a good candidate for participation. Doctor mentioned lowering dosage of decadron because it may be the cause of weakness. Hadn't heard of that before so will see if reducing that med helps. I'm scheduled to start physical/neurological rehab next week. Hope I'm able to receive some benefit. We also discussed this clinical trial early on, before my participation in other clinical trials, but this one is now further along in its development. At our sdbtf.org support group meeting that evening I talked to several people who had participated in this trial, so I got first-hand knowledge of their experiences. Mostly unsuccessful. Didn't get a good feeling about that. Damn, just when you think you're gonna try something that licks this thing! Walking is still a challenge with unsteadiness and balance issues. Not dizzy, just having to focus on getting my left leg and foot where it needs to go before moving forward. Considering getting a walker to see if that helps. Step by step, inch by inch, keeping my balance as I stand or move about our rooms is a challenge, but so far I've managed clumping about like anxiety-ridden Frankenstein. Good thing I don't have to climb up or go down stairs. We planned for that when we selected this condo unit and am I glad we did! Again, no seizure episodes, as of this moment, but no walk around the hood either!
05/15/2013 - MRI scans performed late afternoon with my NO doctor consult on 05/16/2013 - report shows mild enhancement of area surrounding resection cavity with progression of radiation necrosis or additional area of enlarging residual recurrent BT cells. Not the best news, but it was expected. Now, what to do? The decision to participate in a recommended clinical trial is one of my limited choices. I decided to participate in the dexonabinol clinical trial and will start soon. Will keep you posted on my progress. Crossed fingers again!
05/17/2013 - I started neuro-physical rehab and now have a walker, which I'll begin using indoors and out. Exercises I can do at home were discussed and practiced. Almost fell at the curb, after having dinner at a restaurant with some friends and getting up out of my chair. Had been sitting too long in uncomfortable chairs. Left side balance is still a problem. When using just my cane it can still be a problem getting up or just standing for too long. Walking forward is best. Once I'm moving I'm OK. Later in the day, I seem to get worse. Makes sense, as I'm more fatigued. Again, no perceived seizure episodes, except tingling and numbness of fingers/hand, but no walk around the hood either!
05/27/2013 - Celebrated our 35th Wedding Anniversary! Whou'da thunk it so many years ago! Had dinner at Truluck's UTC near La Jolla. Best fresh seafood in SD caught with their own fishing boats from around the world. Again, no perceived seizure episodes, except tingling and numbness of fingers/hand, but no walk around the hood either!
05/29/2013 - Started Dexanabinol clinical trial at UCSD La Jolla with 2 other cohorts in the Moores Cancer Center infusion deartment. 10 hour stay from 7:15am until 5:00pm! No complications except sleeping most of the day and being a complete slug. Must have been a real joy for Deb, NOT!
05/30/2013 - Today, I'm about the same slug, except in more comfortable clothes. Fatigued and sleepy most of the day. Balance issues with left/hand/arm feeling numb most of the day. Used my walker to navigate indoors. Slight left leg seizure episode in the morning. Tingling and numbness of left fingers/hand also continue, and no walk around the hood either! Next week, on Wednesday, I go for the next infusion for a much shorter period of time, but a lumbar puncture afterwards. They're checking on amount of decadron med getting through.
06/05/2013 - Had my 2nd infusion treatment Wednesday. Felt crappy off and on Friday but not Thursday. Go figure. You may note I seem pretty with it. My cognitive functions are not yet compromised, and I don''t expect that function to deteriorate - since the BT cells are not progressing into that area. Though, someone else may disagree. Maneuvering about indoors is not good with just a cane. Without my walker, I would have fallen by now. Balance is the problem and outdoors it's even worse. It's a Catch-22. You want to keep moving to keep your muscles toned but your balance is so off that all you want to do is just sit or lay down into some kind of comfortable chair or bed. Gets boring and frustrating as hell for both myself and Deb.
06/06/2013 - Had a good time celebrating Marni Kass's birthday in Carlsbad with others from our support group. Nice surprise for her!
06/12/2013 - Had my 3rd infusion treatment Wednesday. Every Wednesday, I'll continue the infusion treatment until something may or may not prevent me from receiving treatment. Felt OK during this 5 hour bed stay. I mostly rested or slept while Deb was able to work wirelessly. My cognitive functions are still not yet compromised, but the physical limitations are taking a toll on my psyche and attitude - slowing me down. One can only take so much. Maneuvering about indoors is getting worse, without my walker. But, at least I have the walker and 4-pronged cane to save on energy! All you want to do is just sit or lay down into a comfortable chair or bed. More boredom and frustration for both myself and Deb. I think more so for Deb because she's taking on the heavy load here. She's a survivor (warrior's) best caregiver one could ever want or need! She calls me a trooper but that's her, not me!
06/13/2013 - Bobbie Phares organized another luncheon for our SDBTF.org group, with her son Scott (he, one of our 12 year surviving GBM patients). This time it was held at the Rancho Bernardo Elephant Bar restaurant nearby where we live. Was great seeing those that could be there. Thank you Bobbie!
06/14/2013 - Deb took me to water therapy for exercise. Was good floating in water instead of air. At least I could feel the resistance and relax those tense muscles. Getting in the car afterwards, I strained a muscle in my lower right back so am being careful not to aggravate it further. Will continue water exercises next week.
06/15/2013 - My left hand/arm/leg/foot issues remain a constant irritation, no matter what. Had a muscle spasm (seizure) in my neck at 6:30 pm which lasted about 1/2 minute - also involved slight wobbling of head. A focal seizure episode I've had before but not exactly the usual kind. Sent an email to my Dr.'s for suggested or recommended action. Got a shower chair yesterday and hopefully a raised handicapped toilet seat tomorrow. Beginning to feel like nothing is getting better, so maybe these items will help the anxiety of getting about.
06/19/2013 - Had my 4th infusion treatment and MRI immediately afterwards. Was a long day for both myself and Deb. No noticeable side effects except some constipation. Radiology report suggests slight progression again in same areas of concern.
06/22/2013 - Had water therapy for the second time on Friday and attended my morning referral business networking group meeting where I was awarded their first lifetime membership. This was unexpected and quite the honor as I feel grateful for their support and appreciation. North County Referrals is the best networking group in San Diego. They build relationships through friendships - not just business. Talked with one of my NO Dr.'s about treatment plans going forward. We have a consult set up for this coming Tuesday to thoroughly go over my options. I've narrowed it down to 3. One being, do nothing, and the other two
being - keep doing the clinical trial, or participate in another one. Doing nothing seems like giving up, but the weaker one gets the harder it gets to avoid that final decision. No easy choices here.
06/25/2013 - At NO Dr. consult we discussed best option. Recommended avastin w/irinotecan infusion treatment starting tomorrow morning (Wednesday), and go off the clinical trial. This a/i infusion is not a clinical trial so am hopeful it'll give me some relief and be tolerated well. With my gene sequenced BT analysis, it shows I should be a good candidate for slowing or stabilizing BT and/or edema radiation necrosis progression. The added benefit of receiving avastin should allow me to go off decadron, which is making me so fatigued.Yeah! Irinotecan has some side effects so we'll have to keep a close watch on developing diarrhea. Oh boy, if it's not constipation it's the other. Yoyhe Vaye!
07/05/2013 - The A/I infusion treatment hasn't fully kicked in yet, if at all. Haven't noticed any side effects, but still am fatigued in the mornings and afternoons. I just lay down in bed to rest. Wish it were just old age. I've reduced dosage of decadron down to 6 mg. daily without a focal seizure episode. So far so good. Still no walk around the hood. Haven't done that in quite some time. Relying on my walker to get around inside and out, with major assistance outside - and Deb helps me in the shower, prepare meals and everything else needing done around here that I used to do myself or help with. She's amazing! Received a better ergonomic chair for my office today. Deb put it together and is using my old one in her office. Her old chair was worse than my old one. Needless to say, I'm glad she at least has a better chair! Note: I do hope you do not misunderstand my descriptions of where I'm at emotionally, physically and psychologically. I'm seriously ill with a chance to survive this ordeal - but only a chance. Don't feel you need to respond. Any response, however small, is welcomed!
07/13/2013 - Deb used our 1-person Murphy bed in her loft/office last night (Friday) so we both slept better. The day before (Thursday) we both had a sleepless night with my nasal congestion and overall restlessness. I experienced cramping of my abdomen on Wednesday night (day of my infusion) and took Prilosec that lessened the cramping considerably. I also experienced some of the side effects like fatigue and lethargy, but no nausea, vomiting or diarrhea from the Avastin. Had a little constipation and a slight headache in the morning. Seems like I slept or rested all day Thursday. Must have helped because on Friday I felt much better. Had a home health assessment Friday for scheduling occupational and physical therapy. Their recommendations should help prevent falling again. Deb should bewith me if I use the walker until the PT thinks I'm capable of managing the walker without help. Falling I guess was a reminder of trying to hurry things up a bit too soon after sitting too long and not knowing how best to manage the walker. Taking same meds with a new lower daily dosage of 3 mg. decadron. Haven't really felt a focal seizure come on yet before I take the 2 Vimpat pills again at dinnertime (taken 12 hours apart) and will continue the lower decadron dosage while still taking the same Keppra dosage. So far so good!
07/20/2013 - PT visited yesterday. I used the walker going outside, down our driveway, up the sidewalk to our neighbors and back to our front door. The PT exercises should help lessen the slight swelling of my left foot after sitting or laying about too long. If I raise up my left foot/leg onto the walker seat while sitting - it relieves the excess pressure in my foot, thus reducing swelling. Sometimes my arm or belly senses a seizure episode breaking through, but it doesn't happen. Feels more like a small muscle spasm, or too much decadron causing nervousness - only if I've been resting or sitting for a long period of time. It's all about managing your symptoms and fully understanding the options you're left with. Next doctor visit is this coming Tuesday, and infusion treatment Wednesday, if my blood levels are OK. Will schedule my next MRI's and discuss where I'm at treatment-wise. Hospital bed w/wheels arrived yesterday. Need to get a thermopedic mattress pad for better comfort and play with the adjust button controls to understand their uses and my comfort levels while laying flat, and on left and right sides. Friday night was another restless evening with my covers going everywhere. I think Deb was more perturbed than me - understandably so!
07/21/2013 - Slept better - at least I did. Woke up a couple times without covers everywhere but nasal congestion from catching Deb's cold finally blowing out. Ah, that relief begins.