It is August 2008 and I have been Living Strong with a brain tumor for 10 years!
First Presentation (April 14, 1998) Seizure at the end of a swimming workout.
Diagnosis (April 15, 1998) MRI reveals brain tumor
Surgery (April 17, 1998) I had a craniotomy at Abbott Northwestern Hospital in Minneapolis, MN by Dr. Tom Bergman with the initial goal of removing the bulk of the tumor. However we sought a second opinion the day before surgery and received the opinion that the tumor was inoperable. The tumor was next to my motor strip controlling left side mobility. The surgeon was given strict instructions to be very conservative in the surgery and only remove portions that were clearly tumor and would not affect functionality. He took out three "thimbleful" samples only. IMPORTANT NOTE: Every doctor who has seen my MRIs since then has been bewildered by why I had a craniotomy. They have said that they can see from scans that my tumor was inoperable and taking out a larger portion could have left me with a significant deficit. I could have had a far less risky and less expensive Needle Biopsy to get the same samples. We learned early on the value of a second opinion.
Radiation (May - June 1998) Type: 3-D Conformal Radiation, 6000 rads. Approximately 30 sessions. University of Minnesota. Dr. Seymour Levitt. With 3-D Conformal Radiation the beams of radiation are shaped to match the tumor. Beams are shot from different positions and angles to maximize the radiation hitting the tumor while reducing the amount of radiation on normal healthy tissue.
Diagnosis of Epilepsy (December 1998) After several months of frequent seizures and significant memory loss we sought a second opinion from a Neurologist. We learned that the heavy dose of steroids I had been taking for months were not helping and were actually making my physical condition worse. My tumor was not growing - I had developed epilepsy from the radiation. This was actually good news since epilepsy was very controllable with the right medication. The first week of January 1999 I checked into the hospital and stayed for two weeks while they changed my medications. Within weeks I was 1000% better. I even skied a cross country ski ace in early February.
First Recurrence and Temodar (Temozolomide) Chemotherapy (January - August 2003) Minnesota Oncology Hematology (MOHPA), St. Paul, MN. My tumor began growing in mid 2002 and after months of watching and planning. We decided to try a promising new oral chemotherapy called Temodar. It was not the standard therapy for my tumor but because it had been approved for another type of tumor I could take it off-label. More than 50% of all chemotherapy is taken this way. The standard therapy (referred to by some as the gold standard) is a combination of three drugs called PCV. PCV has a long track record and is known to be very effective but it had a lot of side effects. Temodar on the other hand had a growing body of evidence from clinical trials for efficacy and was very tolerable. I was very thankful to have the excellent care of Dr. John Schwerkoske of MOHPA and to be given this alternative to the standard treatment. I had little problem working and leading a very active life throughout treatment. The worst problems were some fatigue and periodic bouts of oral thrush. I worked out regularly and competed in cross country skiing through the winter. See stories in my journal and reprints of several articles.
Second Recurrence and Gleevec targeted therapy Clinical Trial (November 2004 - December 2005). Mayo Clinic in Rochester MN. I was having no symptoms and a routine MRI a few weeks after the Tour of Hope ended revealed my tumor was growing again. I enrolled in a Gleevec clinical trial at the Mayo Clinic. Gleevec is a Kinase inhibitor that stopped the tumor from growing by taking a protean out of my system that was essential for tumor growth. It was not chemotherapy and did not have a lot of side effects. Dr. Schwerkoske continued as my primary oncologist but I also gained the great care of Dr. Tim Moynihan at Mayo.
Third Recurrence Diagnosis. Surgery. University of Minnesota, Minneapolis MN. (December 27, 2005) In the fall of 2005 my tumor began growing and we were forced to leave the Gleevec trial and find another treatment. The MRI showed overall growth of the tumor mass as well as very active spots that they called "areas of enhancement". These spots they suspected likely were areas of the tumor that were advancing from the original grade 2 tumor to grade 3 or 4 tumor. Confirming this was essential to determine the next course of treatment, how aggressive to treat it, and determine possible qualification for a clinical trial. After a lot of thinking and talking with docs we decided to have a biopsy at the University of Minnesota the morning of December 27th.
It was an MRI-guided needle biopsy performed by Dr. Walter Hall. They would get a piece of this new growth to see exactly what type and grade tumor it is. The good thing is I was in and out of the hospital in a few days and was back at work in a week. Also the chances of a serious complication were much smaller with interoperative MRI surgery. Basically they do surgery inside an MRI machine with real-time imaging guiding the surgeon. The surgery went very well but confirmed our fears that the tumor had advanced to a Grade 3 Anaplastic Oligodendroglioma.
Third Recurrence Treatment: CPT-11 (Camptosar) Chemotherapy and Thalomid Clinical Trial (January 2006 - January 2007). After a number of consultations and a lot of research we entered another clinical trial, this time a trial at MD Anderson in Houston of CPT-11 chemotherapy (also known as Camptosar and Irinotecan) in combination with Thalomid, an antiangeogenesis inhibitor. This involved monthly trips to Houston. All scans were done in Houston as were monthly tests to detect peripheral neueopathy, or numbness in my hands and feet. Thankfully none occurred. Most infusions were done in Minnesota. The treatment was successful for a year and was harder than previous ones but tolerable. The biggest problems were diarrhea and nausea.
Fourth Recurrence. Return to Temodar (Temozolomide) Chemotherapy (January 2007 - September 2007). After a seizure sent me to the hospital in the middle of the night an MRI revealed that another treatment had failed. Because of significant new growth that was causing my to have difficulty walking I was forced to find a new treatment. This time we chose to try the first chemotherapy I had done in 2003 but on a heavier schedule. Instead of 5 days on, 23 off, this time it was one week on, one week off. Although this was not much recovery time, I actually tolerated Temodar much better this time.
Fifth Recurrence. Avastin (Bevacizumab) Targeted Therapy and Procarbazine (Matulane) and Ceenu (CCNU) Chemotherapies (October 2007 - Present)
I was not having any symptoms but had a scheduled MRI a few days before the Ride For The Roses weekend in Austin TX. Unfortunately it revealed that the Temodar protocol has failed. The MRI showed both increased low grade growth (or mass effect) and high grade growth (enhancement). It has also now entered the temporal lobe from the primary site in the parietal lobe. After consultations we decided to try a very new treatment called Avastin.
Avastin has been getting a lot of attention as a promising new treatment for a number of cancers. It had been approved for colorectal and breast cancer. It was being studied at a number of locations for brain tumors, mainly Duke. It was similar to a drug I had taken earlier, Thalomid, an antiangeogenesis inhibitor. Unlike chemotherapy that systemically attacked growing tissue, this drug is a targeted therapy that cut off the formation of new blood pathways to a tumor. In the trials we found it was being combined with either Camptosar or Temodar. Since both those drugs had failed on me we decided to try it first on its own. Once again since it had been approved for another cancer, in theory I could take it off-label and get insurance coverage. This turned out to be more difficult than that and I had to go through a lengthy appeals process to get coverage.
Just before Thanksgiving I started having more difficulty walking. An MRI showed mixed results. The high grade areas of the tumor, typically the most difficult to treat, were showing improvement. However, the low grade mass had increased in size and the pressure was causing my mobility problems. There was local - Mayo - MD Anderson consensus to add the chemo cocktail PCV to the Avastin. I had managed to avoid PCV for 9-1/2 years but it appeared I could no longer put it off. It has been the standard treatment for a long time. It has a long track record of efficacy but it has a lot of short and long term side effects. We ultimately decide to leave out the V drug (Vincristine). It had the worst side effects and all the oncologists believed that its incremental benefit was not worth its toxicity.
Ceenu has been very tolerable but the Procarbazine has been the most difficult drug I have had to take. For the two weeks I take it my diet is severely restricted. I have to cut out many of the foods I love - good cheese, red wine, bananas, yogurt, chocolate, dried fruit, avocados, many meats and many others. I can have nothing aged or potentially spoiled so my diet is simple and fresh.
I have also had to deal with another side effect of Procarbazine - peripheral neuropathy. It is a somewhat common side effect of Procarbazine, and can be permanent. It feels like I am always wearing fuzzy wool socks. That is the "warm and fuzzy side." On the downside I am a little less sure footed. It is like bad traction so I never go barefoot, especially in the shower or on the pool deck.
My next MRI was in February and the results were dramatic: Significant improvement! More specifically, the improvement is across the board in all the measurements my doctors talk about: (Mass, or response of the lower grade bulk; Enhancement, or response of the higher grade areas, and T2 Signal Abnormality, There was what I would call a bonus in there, described as a "cyst-like necrosis...". Probed a little and asked to put in English, he said "tumor dying." That's good.
I have not seen a report like this since 2003. We have been happy for at least 4 years with a report that simply said "stable". An MRI in May showed similar directional results yet not as dramatic as February.