Barry's journey through Primary Central Nervous Lymphoma

Before we start ths journey I need to mentiom that most CSN Lymphoma docs will agree I am an an unusual case because I have fough this disease so many time, my journy has involved many issues not often encountered in pcnsl treatment. Because of advances in treatment, Lasting remission. can often pe achived with chemotherapy alone.

July 2002
I was a well-respected and well compensated Information Technology (IT) type of guy specializing in the niche of providing IT services to larger multi-franchise automobile dealerships for 18 years. While I was in the middle of a huge combined hardware and software upgrade to a single computer system supporting several automotive dealerships and hundreds of employees I started to experience a "shimmering" in my left field of view and I started having headaches which were a rare experience for me. In early August of 2002 I had seen my primary care physician (PCP) twice and he thought I was having "stress headaches" and gave me a script for Valium. In late August I saw an ophthalmologist thinking I might need different glasses as my vision seemed to be deteriorating. I got new glasses and the headaches worsened, the visual distortion increased and I was starting to have some VERY noticeable cognitive issues (forgetting my way around my own home, and office.  In Late September everything finally came on-line successfully and I waited for the headaches to dissipate. Instead I found myself being woken in the night with my whole body twitching to the pounding in my head and frequent vomiting during the night. 

September 26 2002
I called my PCP and he told me to get to the Mary Washington Hospital emergency room immediately. When I arrived they gave me a CT scan and returned a half hour later saying that I needed an MRI.  That’s when I knew I was in trouble. After the MRI I was told I had a large mass in my brain and that I was going to be admitted and scheduled for a biopsy of the tumor two days later. At 11:30 that night my PCP showed up to state how sorry he was. He told me that the MRI showed that I had a "Glioblastoma Multiforme"(GBM) which was a very aggressive and deadly cancer. I had my first biopsy the following day. The hospitals pathology department declared it an "Astrocytoma" (a GBM is a grade IV Astrocytoma). Some of the tumor biopsy was also sent to John Hopkins for verification. While I waited for results from john Hopkins they put me in the palliative care unit to stabilize me with Dexamethasone. 

I was trapped in the hospital for 12 days as they waited for pathology results from John Hopkins. I spent my time researching GBM and wondering what I had ever done to make an impact on the world. I was lucky to have recently found a friend in a woman who had fought and survived Leukemia as a young adult and was still thriving many years later and making a conscious effort to fully enjoy the blessings of every day. I found her zest for life very inspiring Little did I know how important her lessons were going to be to me during my Journey. When the results came back as lymphoma I was relieved if for no other reason that I'd at least heard of lymphoma before. So I figured there MUST be a treatment for it. I was seen by the local oncologist the following day where I was told that the Mary Washington hospital was not equipped to handle my treatment and they were transferring me to Virginia Commonwealth University's (VCU) Massey Cancer Clinic 85 miles away in Richmond. 

October 2002
After reviewing the information from Mary Washington and running many tests (spinal tap, bone scan, PET scan, etc.) the folks at Massey told me that I had thirty days to "get my house in order". That didn't leave much time for a second opinion so I asked when we were going to start treatment? we discussed the treatment plan they had to offer. I was fitted with a venous access catheter (port) that allowed large doses of chemotherapy to be delivered at high volume. It consists of a small reservoir implanted under the skin of my right breast that is connected to a tube that travels to the left ventricle of my heart by way of the jugular vein. I was initially treated with 6-rounds of very high dose Methotrexate (3gr per liter squared). This reduced the tumor my about 80 percent.

February 2003

I was then offered the option of Whole Brain Radiation Treatment (WBRT) or stereotactic (focused) radiation. I was warned that WBRT was known to cause late onset of long term cognitive issues including the possibility of dementia. I opted for the WBRT because I wanted to be sure we eradicated any and all lymohoma cells that might be hiding in the nooks and crannies of my brain. I received 25-"fractions" of 1.8gy each daily (Mon-Fri) for 5-weeks for a total of 45gy. I was declared in remission in May of 2003.

During all of this I was trying desperately to get any clear information concerning this disease. I attended a very large national survivors and caregivers' conference hosted by the American Brain Tumor Association (www.abta.org) and several smaller events sponsored by various groups and treatment facilities. At these events I only came across 3 other survivors (1-HIV positive). I have heard many doctors present many treatment options then when asked how that pertained to CNS Lymphoma I was told that’s a completely different matter handled in a different manor. I have yet to be to a public event where CNS lymphoma was part of the presentation or any CNS lymphoma specialists present. I was desperate to validate what information I had and frequently got conflicting information from what sources I could find.

In 2004 I met up with Samantha J. Scolamiero founder of the BRAINTRUST ( a provider of support groups covering many different types of PRIMARY brain tumors) and I enquired why there was no lymphoma group on the BRAINTRUST. She replied that it had never been requested before. She asked me if I would provide the daily management if they created the group? I agreed and the rest is history.

In 2005 I met a wonderful woman on eHarmony that found me interesting and inspiring enough to take a chance dating me. She was fully aware of my condition and informed her parents of my condition. Her mother did not take the news well. She was terrified that her daughter was going to fall deeply in love with me, we'd get married and then my cancer would return and I would die leaving her brokenhearted homeless and destitute because of my medical bills. After dating for three years and having had over 4 years of clean MRI's everybody was feeling pretty comfortable and we got married on July 29th 2007 we were married.
 
August 2007
A month later In August I went for my final, 5-year, case closed MRI. My cancer had returned. The mother in-law saw her prophecies coming true. Various issues with my doctor at VCU's Massey center led me to make the decision to find a different treatment facility. The National Institutes of Health and National Cancer Institute were not too far from me so I decided to start at the top. They ordered up a slew of tests and ended up doing a second biopsy that confirmed my lymphoma had returned. That’s when I was told they are a research facility and not a treatment facility. They didn't have any active trials for recurrent CNS lymphoma and referred ne to Memorial Sloan Kettering in New York City. Sloan Kettering has long been one of the leaders on CNS lymphoma treatments so I figured it was worth a shot. My wife and I took the Amtrak shuttle from Washington Union Station to Ny's Penn Station to see if I qualified for the trial. A very modest not so clean room cost us $120. The folks at Sloan Kettering reviewed my case and offered me a chance to participate in a Phase II trial of Rituximab and Temodar involving four outpatient visits over one month. The trial was an outpatient event that would require my presence for four Fridays and I had to stay nearby for 24 hrs incase something went wrong.

My wife and I started planning things out. The American Cancer Society (www.cancer.org) operates an amazing refuge for cancer patients where you can stay in a hospitable place with a communal kitchen on each floor, a business center where you can use their library or the internet to do your research and a communal great room with fireplace and furniture to socialize with other patients. The three hospital served by the hope lodge offer shuttles to their facilities. It’s a block from Amtrak's Penn Station. The hope lodge requires 1)your physician to write a referral, 2) that you have somebody present to keep an eye on you, and generally requests that you stay at least 3-days. There is NO CHARGE for your stay! My wife and I hoped the train back to NY on Thursday evening, presented ourselves for chemo on Friday, stayed Saturday in case of complications And went back to Virginia on Sunday. There are several Hope Lodge's close to larger concentrations of cancer treatment facilities. 

After the four treatments we went back to Sloan Kettering for another MRI and see what progress had been made. Unfortunately this particular trial didn't work well for me and I came out of the trial with more tumors than when I went in and instructions to "get back on Methotrexate back in Virginia. Not ever wanting to return to the Massey Center, I took a look at Georgetown University's Lombardi clinic in Washington D.C. and the University of Virginia (UVA) where I found Dr. David Shiff who graduated from Harvard, did residencies at Sloan Kettering and the Mayo clinic. He's the guy I want treating Me! We discussed my situation and I told him that I wanted to receive the Methotrexate plus the Vinchristine and Procarbazine of the CCNU protocol. He agreed and stated that he would agree to give me 5-rounds of the CCNU cocktail but also warned me that neuropathy (numbness) of the fingers and toes often resulted and was sometimes permanent. Dr. Schiff also agreed to give me two additional rounds of Methotrexate after my MRI showed me to be clean. I was clean after five rounds of the whole cocktail and received two additional rounds of Methotrexate alone. In June 2008 I was done with chemo, Further radiation was no longer an option to me so my treatment ended in June of 2008.

My employer had to let me go while I was in treatment at (UVA) because of my cognitive issues. I was expecting that and had already applied for social security disability. I received my award in just 21-days! You don't qualify for Medicare for 24-months after receiving you disability award so you ABSOLUTLY have to keep your COBRA coverage active until you get other insurance or get covered by Medicare. If you qualify for disability you can get an 11 month extension to the normal 18 month COBRA coverage up to a total of 29 months.

I did some research on improving my cognition and found Posit Science (PositScience.com) and their "Brain Fitness" program which is a clinically developed and tested brain exercise program you run from your PC. Several friends and family members say that it made dramatic improvements in my cognition, attention, and memory. 

In September 2009 I was working with the Virginia Department of Rehabilitative Services in an effort to get gainfully re employed when I started having significant issues in my right (dominant) eye. The doctors first thought that I had a ruptured blood vessel in my retina caused from my prior WBRT in 2003. It didn't take too long for them to determine that something was growing in my eye and infiltrating the optic nerve. They did a vitrectomy and pulled a "carpet of gel" off my retina. Cytology showed the presence of non-Hodgkin's type B lymphoma. I received 8 Methotrexate injections directly into my eye. The MRI after the treatments showed no active cancer. In March of 2010 they did some structural repairs to my eye, removed the lens, and filled my eye with silicone gel. The cancer had infiltrated my optic nerve and destroyed my retina. Both were unrepeatable.  The vision in my right eye was gone

2010
I am now starting a "maintenance" progrm byreceiving Solu-Medrol (methylprednisolone sodium succinate) momthly, a steroid to help my own immune system keep the cancer at bay. I also receive Rituxan (Rituximab), a genetically engineered monoclonal antibody that attaches to a protein labeled "CD20" which is found only on cancerous lymphoma cells. Once the Rituximab attaches itself to the CD20 protein the body's own "hunter Killer" T-cells recognize the pair and take out CD20bad guys. I receive an infusion of Rituximab every three months

2011-2012

In August 2011 a small anomaly showed up on my MRI. I was hoping it was a fly that passed through the field or maybe a stray atomic Quark.   In October 2011  follow-up MRI a 2cm tumor was found. This is the fourth time I've had to fight this beast! Because they have never been able to discover a cause or source of my PCNSL The decision was made to do an autologous stem cell transplant ASCT) This is essentially a "hard reboot" of my immune system. I finished off 2011 with two months of intensive inpatient chemotherapy and am planning on having the ASCT in March.

As part of the work up prior to my autologous stem cell transplant(ASCT) I had a bone marrow biopsy where they extract some bone marrow from my pelvic bone. Bone marrow is a tissue found inside our bones (especially the femur’s and the pelvic bone) that produces and replenishes our blood cells (Red (hemoglobin), White (lymphocytes) and Platelets). Bone marrow replenishes about 600 million blood cells every day. When they did my bid my biopsy they also found a .05 percentage of “large B cells” commonly known as Non-Hodgkin’s Lymphoma. I’ve translated this as NHL “bomblets” that went undetectable to normal scans just waiting for the chance to be released and start another battle with me. For those that REALLY want to know about chemotherapy and the agents used to treat cancer I’ve added hyperlinks to chemocare.com.
Before doing the ASCT They needed to get rid of the 2cm tumor in my brain. 

In October 2011, I started 7 sessions (14 weeks) of high dose methotrexate chemotherapy to eradicate the tumor.

On February sixth 2011 I started the ASCT in earnest with two 9 day sessions consisting of:
Rituximab (Rituxan)
CytaraBine (Ara-C) over 12 hrs
CytaraBine (Ara-C) over 12 hrs, High dose Cytarabine over 3hrs and Etopside over 2hrs
CytaraBine (Ara-C) over 12 hrs, High dose Cytarabine over 3hrs and Etopside over 2hrs
CytaraBine (Ara-C) over 12 hrs, High dose Cytarabine over 3hrs and Etopside over 2hrs
Day of flushing and recuperation 
Neupogen (first of ten
Rituximab (Rituxan)
CytaraBine (Ara-C) over 12 hrs
CytaraBine (Ara-C) over 12 hrs, High dose Cytarabine over 3hrs and Etopside over 2hrs
CytaraBine (Ara-C) over 12 hrs, High dose Cytarabine over 3hrs and Etopside over 2hrs
CytaraBine (Ara-C) over 12 hrs, High dose Cytarabine over 3hrs and Etopside over 2hrs
One week of flushing and recuperation
Harvest My stem cells via Apheresis
Neupogen Second harvest of stem cells

Now comes the worst part. Reaching deep inside the bones to destroy the bone marrow.
Thiotepa
Thiotepa
Thiotepa
OMG what a horror! I ave to take a shower every 4 hours, a crew comes in and changes the bed, wipes down counters & fixtures (what exudes from my skin is hazardous!)
High wolume IV flush, flush, flush, often and sometimes unncontrollable need to pee or poo! frequent changes of hospital provided "shit shorts"
Busulfan & Cytoxan
Busulfan & Cytoxan
Busulfan & Cytoxan

The mucositis kicks in! my mouth and throat are sore and irritated and are producing large amounts of thick stringy phlegm some of which drains into my lungs.
I'm put on a self-administered "pain pump" filled with synthetic morphine (Dilaudid).
I finally get a suction wand. I use it about every five minutes for two days just to keep ahead of the phlegm.
Flush out toxins and wait for blood counts to completely bomb (no bone marrow). 
They then re-infuse the harvested stem cells.
Wait for stem cells to rebuild bone marrow Watch blood counts (red, lymphocyte’s, and platelets’) Augment with whole blood and platelets as needed.
Wait for blood counts to stabilize at healthy levels before releasing me,
Suffice it to say this was massive dose of many high powered chemotherapy agents that took a significant toll on me both physically cognitively. 
The doctors said I tolerated the procedure well and recovered amazingly fast. Another patient who underwent the same procedure two weeks behind me never made it home :-(

May 10th 2012
They let me go home since we lived so close to the hospital. any farther away from the hospital. If we lived any further away, they would have asked me to stay at the red roof in across the street from the hospital. We take home a large box of prefilled syringes of saline solution and Heparin. Shawna is in charge of Flushing all three heads if my "HICKMAN" central line it needs to be flushed with saline to remove any potential clots then "locked" to prevent clots. For the first two weeks I have to go back to the hospital every day. For the next six weeks I have to go back two or three days a week for the first two month to keep an eye on my blood counts.

September 2012 – I have achieved 10 years as a PCNSL survivor! My wife has always been a bright light shining in my dark times we went out for a quiet dinner and my told me how happy she and my sister are that I have keep up the good fight for the past ten years. I don’t think I would have made it without their support and cheers.

May 2014

Its two years since I was released from the stem cell program and I'm fighting Battle vVersion 4.5 to attain a normal life. Freedom of movement, Walk correctly and efficiently, and make sure I have a sufficient load of functioning neurons and synapses. I'm coming to the end of two years pf physical therapy. I am walking SIGNIFICANTLY better but far from well. I tire easily and have to use aids. I am still dealing with Balance issues, chronic fatigue, and various cognitive issues

July 2014 Since 2005 I've been having occasional "Incomplete complex seizures". That were originally diagnosed as Transient Ischemic Attack's (TIA) often called "mini stroke". The doctors at the center put me through many tests before making this diagnosis. I was tool "these are small ones, the big one is coming"! When I was being seen by the National Cancer Institute in 2007 they had several doctors interviewing me. One asked me to describe my TIA's. She then exclaimed "I'll bet my house you’re having incomplete complex seizures!" These aren't GRAN MALI seizuresv just quiet tornado's in my brain. The oust significant feature is expressive been on various anti-seizure medicines ever since. Recently I've been under a lot of stress and I've had a couple of "break-through" seizures in a relatively short time span. What was once called a "seizure disorder" has now been titled Epilepsy. The epilepsy clinic is working on finding the correct dose keep my seizures at bay and allows me to live as normal a life as I possibly can.

November 2014 My physical Therapy allotment for 2014. I had a fall right in front of my speech therapy doc's that brought many others to see if everything was OK I told them "the only damage was a bruised ego. depending on the situation I currently walk around the house and short walks from the car to the destination unaided, walk with a cane. longer trips shopping, hospital etc. I need a walker.

They are signing me up for Neuro Physocology counseling trying to determine if I really mean it when I tell them I'm dissapointed not depressed