Post #24: The Half-Way point & visit to the Shedd Aquarium

Today marks an important milestone for me. After my radio-oncology treatment today, I have now completed exactly half of my 6 week regimen meaning that I am officially working on finishing the second half of my regimen. Fifteen down and fifteen to go before I have a complete break in my treatments for 3 full weeks. It does seem like a milestone for me. And again, so far, I am lucky to not have had had any serious side effects.

My appointment was scheduled for earlier in the day today because the radio oncology staff had afternoon meetings. So, instead of going home after the 9:45 AM appointment, Patty & I made a trip to the famous Shedd Aquarium near Soldier Field on the way home from the hospital. Patty just loves aquariums and I thought that it would be fun to do something different and would also keep my spirits up. The Shedd Aquarium is located in the large museum complex near Soldier Field. We parked our car and walked about 0.25 miles in the cold to get into the Shedd aquarium. We were at first disappointed to learn that there would be no whales, dolphins, or penguins on exhibit today. They would be gone from this museum until at least June. But, we were able to find lots of other stuff to entertain us with. There were lots of live fish and coral displays from the Caribbean and SE Asia. But the thing that was the most interesting was a 3D movie with both sound effects, wind, sprinkling water and things moving under everyone's seats. They actually called it a 4-D movie no doubt due to the included special effects. Oh yes, we also had for lunch, official Chicago loaded hot dogs that we also mighty good. It was good to get out and do something different today.

Post #23: Revised new drug matrix

Now that Dr. DeMassi has reduced my DEX dose down to 2 mg, once a day, I've revised my drug matrix to reflect the change. Here's the latest (click on image to enlarge).

Post 22: Quick to to Indy Jan 16-19

We made a quick trip back to Indy for the weekend of Jan 16-19. It was great to be back in our own home if just for a little while. The drive takes about 3 .25 hours to make so it’s not too difficult given the good weather that we had.

Saturday morning after we arrived we made a trip to our favorite German butcher shop: Claus’ on Shelby Street. There we purchase 1.5 lb of their home-smoked bacon and a bunch of their custom Bratwurst which we also love. We were
supposed to have dinner on Saturday with Thomas and Sarah sharing those brats but Thomas came up sick and we were forced to enjoy them by ourselves.
It was all TV football for me on Sunday.

Today (Monday, January 19, 2009) we drove back to Chicago. We made a stop for lunch at Martin’s Restaurant in Rensselaer, Indiana where I enjoyed a grilled cheese sandwich combo including a cup of cream of chicken soup. There’s nothing like a quaint diner in rural Indiana to bring you back to reality.

I had a 3 PM appointment for my radiotherapy and then an appointment with Dr. DeMassi. The mask was extra tight today and quite unformfortable. Clearly, I’ve gained some weight being on the steroids and it’s causing my face to puff up. Surprisingly, Dr. DeMassi has allowed me to cut my current dose in half (now 2 mg once daily) which I’m hoping will help cut down on this side effect. He did warn me to be aware of any headaches coming and if they do, he will bring the dose back up again.

Post 21: My Clinical Trial Agent: AVASTIN

(Taken from Wikipedia)

Bevacizumab (trade name Avastin, Genentech/Roche) is a monoclonal antibody agent that has specific reactivity against vascular endothelial growth factor-A (VEGF-A). It is used in the treatment of cancer, where it inhibits tumor growth by blocking the formation of new blood vessels (angiogenesis). Bevacizumab was the first clinically available angiogenesis inhibitor in the United States.

Bevacizumab is currently approved by the U.S. Food and Drug Administration for cancers that are metastatic (have spread to other parts of the body). It received its first approval in 2004 was for combination use with standard chemotherapy for metastatic colon cancer and non-small cell lung cancer. In 2008, it was approved by the FDA for use in metastatic breast cancer, a decision that generated some controversy as it went against the recommendation of its advisory panel, who objected because it only slowed tumor growth but failed to extend survival.
Clinical studies are underway in non-metastatic colon cancer, non-metastatic breast cancer, renal cell carcinoma, glioblastoma multiform (GBM), ovarian cancer, hormone-refractory prostate cancer, non-metastatic unresectable liver cancer and metastatic or unresectable locally advanced pancreatic cancer.

PS: I am currently scheduled to received my first Avastin infusion around March 5th. I'll keep you all posted on the exact schedule.

Post #20: How Deadly & Rare is GBM ?

taken From Wikipedia:

Glioblastoma multiforme (GBM) is the most common and most aggressive type of primary brain tumor, accounting for 52% of all primary brain tumor cases and 20% of all intracranial tumors. Despite being the most prevalent form of primary brain tumor, GBMs occur in only 2-3 cases per 100,000 people in Europe and North America. The standard WHO-2007 name for this brain tumor is “Glioblastoma”.

Treatment can involve chemotherapy, radiotherapy, and surgery, all of which are acknowledged as palliative measures, meaning that they do not provide a cure. Even with complete surgical resection of the tumor, combined with the best available treatment, the survival rate for GBM remains very low. However, many advances in microsurgery techniques, radiotherapy and chemotherapy are slowly increasing the survival time of patients diagnosed with glioblastoma

Post #19 : Settling into a Routine

My posts are now completely up to date.

Today is Thursday, January 15th and I have received nine radiation treatments and 11 oral chemotherapeutic (Temodar) treatments with few if any side effects. I consider myself fortunate to have not experienced side effects.

We have settled into a routine. We leave the condo at noon each weekday and arrive at the hospital around 12:35 PM giving us plenty of time to walk from the garage to the radiation oncology check-in area. My appointment each weekday is at 1:00 PM although the exact time varies somewhat. Usually, the treatments take about 15-20 minutes each day. One or two days a week they also take some extra images for Dr. DeMassi to inspect. We normally pack up and leave the hospital around 1:45 PM and get back to the condo by 2:30 PM unless we decide to do a little shopping on the way home for food or other stuff. Then it's a little rest and dinner comes up pretty soon which is usually order-in, walk to a restaurant, or Patty will cook a light meal. My Compazine goes down at 9:30 PM followed an hour later by the Temodar.

Tomorrow (Jan 16th) I will have an appointment to find out how my blood counts are holding up (hopefully OK) and we will make a short trip back to our home in Indianapolis for the weekend before returning to Chicago to start another week of treatments. This will make 2 full weeks finished with 4 more weeks to go in this initial phase. Then I should get 2-3 weeks off with no treatments at all at which time we are planning on spending 1 week or more in Fort Myers, FL.

Post #18 : Some Words about our Health Insurance Plan

Based on what we are currently going through, when you think of the benefits that you receive from your employer, put your own health plan at the top of your employer's benefit list. There has been nothing more important to us during the entire experience than how our Health Plan has stood behind us during this crises. We are insured by Anthem (Lumenos Health Reimbursement account) and their service has been beyond outstanding. The hospital and pharmaceutical bills have been through the roof and our coverage has been excellent.

The initial hospitalization at Lee County Memorial (Fort Myers) came to over $85,000 including the critical care stay and the surgery services. To my knowledge, we still have not have received the surgeons charges for my de-bulking surgery from Dr. Javedan. We ended up owing less than $1,000 out of pocket for all of this. Then, there are the drugs that I'm taking or had been switched from. Many have gone generic but many have not. The list included: Dilantin, Keppra, Dexamethasone, Ambien, Compazine, Bactrim, Pepcid, Lotrel, Zyrtec, and the chemotherapeutic, Temodar.

This last drug on that list was the most surprising (I shouldn't really be that surprised). For each charge (either hospital bill or drug charges) Anthem sends a paper statement indicating how much the standard prices are and how much that they are willing to pay based on their contract with the suppliers. The shocker was that for a 45 day supply of Temodar (pills) the stock price was -$13,000. Hard to believe but it's true. We are guarding these pills like they are gold. Our out-of-pocket expense for the 45 day supply pills came to $0.00.
So from this, you can see how valuable our health insurance plan has been to us.

I cannot say enough in how appreciative that we are for this benefit nor imagine what others go through without such coverage.

Post #17: Living the Urban Lifestyle

My wife Patty and I have lived a “suburban” lifestyle for our entire lives. This involves living in a single family house, driving to restaurants and grocery stores and not walking a lot except for planned exercise or hikes. Now that we are living in a downtown condo, our lives have changed dramatically as we now are living the “Urban” lifestyle. So now, we reside in a high-rise building (21 floors) and live in a small apartment. Food shopping (grocery) and drug stores (CVS, etc.), and of course restaurants are within walking distance and that's how we get to most places. Of course, you have to plan around the weather here in Chicago, bundling up when necessary. But, it's OK with us; it's just very different from what we are used to. We also have a 24 hour doorman who is nice and helpful for us in finding places around the neighborhood and negotiating tasks in the apartment building. Another thing that is interesting is that nearly every restaurant offers delivery services so if the weather is extremely bad, they can just bring it directly to your apartment (right upstairs if you tell the doorman that it's coming).

It helps in Chicago to have a reserved, indoor parking space as well that is attached to the apartment house. When we drive to the hospital each day, we really don't have to go outside at all and that's fine with us when the wind chill is below zero.

Finally, if you look out the window from our apartment, you can see probably 20,000 other windows where others are doing the same. I told Patty that when I do this, it reminds me of the famous Alfred Hitchcock movie staring Jimmy Stewart call “Rear Window”. So far, I haven't seen any potential crimes taking place and I haven't gotten a telescope as Stewart did in the movie. And that's a good thing.

Post 16: First Day of Follow-up Treatments

After having my stomach feel pretty bad for most of the weekend, I went into the start of my follow-up treatments with a little trepidation.

We had an early lunch at the condo at 11 AM on Monday, Jan. 5th and drove down to the hospital and parked. From there, we headed to the radiation oncology department and while Patty waited in the waiting room, I went back for my treatment. I had to remove only my shirt and put on a hospital gown for my top. I lied down on the padded bench of the CT scanner/focused radiation combined instrument and tried to relax as the technicians positioned my head on the customized cradle and then tightly affixed the masked to my face. This is not a comfortable position to be in and if you have any inclination toward claustrophobia, you would have to take a Valium each time. Prior to getting in this position the technicians helped me get my IPOD running so I could hear my music.

The entire treatment procedure takes around 15 minutes as they position both me and the instrument to focus the beam on the seven spots in my brain that they want to hit. If I relax and focus on the music, it's really not that bad. Two time a week they also take additional images while I'm in this position that Dr. DeMassi looks at for correct positioning. That takes another 15 min. But, all-in-all, it's really not that bad.

Before leaving, we spoke briefly to Dr. DeMassi who indicated to us that everything looked good to him.

We then left the hospital and drove back to the condo where we relaxed for the rest of the day. This Monday night was also to be the start of my oral chemo treatments. I was apprehensive about that too, given my stomach issues over the weekend. We had our dinner and when 9:30 PM came up, it was time for my Compazine pill. This went down fine. Then, at 10:30 PM, it was time for my Temodar pills. I had everything ready by my bed including another Compazine tablet, some Pepcid, and a towel in case I got sick. But, low and behold, I experienced no problems at all and did not have even the slightest bit of stomach upset.

In summary, the first day of treatments went without any incident and that's the way that it's been for each day since. Obviously, we are quite pleased with the way that this is playing out.

Post #15: The Ravages of Dexamethasone

Post #15: The Ravages of Dexamethasone

from Wikipedia.org:

Dexamethasone (DEX, brand name Decadron) is a potent synthetic member of the glucocorticoid class of steroid hormones. It acts as an anti-inflammatory and immunosuppressant. Its potency is about 20-30 times that of hydrocortisone and 4-5 times of prednisone.

This was one of the first drugs that I was put on after entering Lee County Memorial Hospital in Fort Myers. Mostly, I was put on it to relieve brain swelling, edema, and the symptoms that generates prior, during and after the de-bulking surgery that I had. Dr. Javedan put me on 6 mg/3 times a day (TID), which is a fairly hefty dose. I know that I needed it but the side effects began almost immediately. They included: hungry and thirsty all the time, restlessness, inability to sleep, constipation, dizziness, and stomach upset (that's why I'm taking a lot of Pepcid). Basically, it speeds up your metabolism completely. It's hard to relax when you are on this drug.

It's a brutal drug to be on because of this. A more subtle yet obvious effect is on mood and emotion. I consider myself and fairly “non-emotional” type of person. But while taking DEX, I find that I cry easily. I even watched a “chick-flick” and teared my way through it. You know, it's the new, “emotional” Phil Marder. After extended use, which I'm also experiencing, it can cause lack of wound healing (those blood sticks for the lab test cause leak and leave bruising on my arm), excessive hair growth (heavy beard) and puffiness in my face, development of a “pot belly” and leg/hand/foot cramps.

It didn't take very long after meeting the doctors in Chicago before they lowered my Dex dose down from 6mg x 3 times/daily (TID) to 4 mg 3 times/daily (TID). Eventually, they reduced it to 2 mg/twice daily (BID) or a total of 4 mg/day. This reduction has helped me a great deal to this point. The radio-oncologist, Dr. DeMassi , has told me that's as low as it will go because of potential brain swelling from the focused beam irradiation treatments.

So, when Dr. Nicholas' team lowered my dose to 2 mg BID, I thought that I would immediately feel much better. But, this was not the case. The rapid decline in dose caused me to “hit the wall” with severe exhaustion and worse yet, a complete shut-down of my GI digestive system. On Saturday, Jan 3rd, I was a total mess being tired and nauseous. My breakfast and lunch just sat in my stomach and never moved. Knowing that my irradiation and oral chemo was to begin on Monday, January 5, I was quite concerned. But, fortunately, on Sunday I felt much better and by Monday, January 5, I was fine and ready to start the new regime.

Post #14 Jan 1-2: into the condo & into the trial

We drove up to Chicago with a fully loaded down car and moved into our condo on January 1. There, we met by one of the condo owner, Jim Sosnoski who helped me set up our computers and television that we brought up to Indy. This was very helpful as you might imagine. I would be totally lost and useless in the condo without access to both technologies. Jim also showed us around the neighborhood explaining the surrounding restaurants and the delivery services that they provide. After driving us around the neighborhood he dropped us off and we had an early dinner at a wonderful Thai restaurant that is three blocks from our place. Then it was back to the condo to get a good night sleep before our trip to the hospital the next morning Friday, January 2nd.

The next morning, Jan. 2nd, we drove from our covered parking spot at the condo to the hospital parking and went directly to the labs where my liver enzymes were to be tested again. In about an hour, we went up to see Jean, our nurse coordinator, who happily told us that my numbers were down in the 50s so that I was officially accepted into the clinical trial. What a relief that was to hear. They also lowered my DEX dose down to 2 mg/ twice daily (BID). We went out to an Italian restaurant to celebrate later that evening.

Post 13: In Indianapolis Dec 24 – 31, 2008

Post # 13: Traveling and staying in Indianapolis Dec 24 – 31, 2008

It was an easy drive back from Chicago to Indianapolis on December 24th. The weather was clear and the traffic was light. We arrived at the house by 5 PM, turned up the heat and relaxed before having a dinner we salvaged from the freezer. The problem was however that all the food stores were closed both on this day and the next (Christmas), but somehow, we made it through by going to the Chinese Restaurant that is always open for Christmas. On Friday, we went to our favorite Mexican place near Keystone Ave and enjoyed it a lot. Saturday and Sunday were for rest, relaxation and packing for our return to Chicago on January 1st for our major stay.
On Monday, December 2th, Patty and I drove to the Red Lobster Restaurant on Shadeland Ave in Indy to meet with my old group from Lilly. Present were Larry Mann, Lisa Green, Rita Bowers, and added to that was my good friend and Colts’ buddy David Abbott. We had a great meal and caught up on everything that they are now involved with in their transition from being Lilly employees to now being employees of Covance Labs after the group was sold off to Covance in August. It was great to see everyone again. After lunch, Patty drove off shopping and David Abbott and I went driving around Indy for the purpose of transferring our Colts ticket account into his name.

Post #12: My drug Matrix

Post # 12: A matrix and schedule of all the drugs that I'm currently taking
It's hard to believe the number and amount of drugs that I'm taking for treating this disease. It's a full time job just keeping track of when and how much of each one that I have to take. Here's a small graphic to give the schedule that I'm on. I'm not even going to go into the indication or side effects for each one. The idea is just to let you know what I'm dealing with.
Click on the graphic to make it bigger and easier to read.

Post #11: Meeting Dr. Nicholas on Dec. 24

Post 11, Meeting Dr. Nicholas on Dec 24th and driving to Indy.

We arrived at the hospital around noon on Christmas eve and went to the neuro-oncology desk to pick up my lab order. Another stick in the arm and then we went to lunch for about an hour until they could measure those liver enzymes. We went up to Dr. Nicholas' area and met with Jean, our nurse coordinator who indicated that my enzymes had indeed gone down in those 5 days from 120 to 89. So, they were trending down after a short time and the changes in meds. This was encouraging. We then met the lead investigator, Dr. Nicholas who was as nice as can be. The previous week, we had met his associate, Dr. Lukas who works closely with him. Dr. Nicholas asked me if I wanted to see and compare the pre and post MRI on my brain before and after surgery and I finally had the courage to look at those images. I have to say, that the surgeon in Fort Myers (Javedan)) did do a good job of getting a lot of tumor out. But, there was still quite a bit there. The residual was to removed by the radio-oncologist, Dr. DeMasi via the focused beam irradiation. I found out later that there were 7 distinct regions to target there as part of my 6 week course. Dr. Nicholas again went through the order of the clinical trial and reinforced the fact that my enzymes had to come down to 70 by January 5th, if I was indeed going to get in. He also lowered my DEX dose down to 2 mg/ TID. So, I was now down from 6 TID to 2 TID, a 3 fold reduction. More about this later. By 2 PM, we packed into our Honda and headed down to our house in Indianapolis to spend Dec. 24th to Dec. 31th there for a brief respite that was quite welcomed.

Post #10: Dec 20 to 23 in Chicago

Post #10: In Chicago until Dec. 24th.

We tried our best to keep busy while waiting at the Comfort Inn in downtown Chicago before our visit with Dr. Nicolas on Dec. 24th. We did a little shopping near the Water Tower, went out to eat and waited for our next visit with Dr. Nicholas scheduled for Dec 24th at noon, all the time keeping my mind on trying to get those liver enzymes down. I sent a note via Linkedin to an old friend, Terry Gladman in hopes that he was still living near Chicago. I knew Terry Gladman from my old Ohio state days when we both resident advisors in the dorms there. Years later, I bumped into Terry at Lilly corporate center where surprisingly I found out that he was working sales for Lilly in the Cleveland area. We rekindled an old friendship at that point and kept in touch again for several years. Later on, Terry left Lilly and went to Chicago to work for Searle. This was in the late 1990s. We visited Terry up in Chicago several times while he was working there. Terry’s life changed again during that time. He and his first wife split and he remarried, and had 4 children, (much later in life that Patty and me). Around 8 years ago, Patty and I again rekindled our friendship and drove up to Chicago to meet with Terry, his wife Margaret and his four children. We even played some golf together. Unfortunately, we lost touch again until this moment.It was just a stab in thin air to try to find him on a professional networking site called Linkedin. In fact, I did find him there, sent him a note and he responded. Turns out that Terry (at my age!) took a high senior position in pharmaceutical advertising with Novartis in Switzerland. I thought that he was now living there and in fact that is his home base. Fortunately, he was back in Chicago right now for the holiday season. We arranged for Patty and me to lunch with Terry and his wife Margaret near our hotel on Monday, Dec 22nd and had a great time catching up and remembering old times. It was very enjoyable for all of us.

Post #9: Dec. 19, hosptial, condo, liver enzymes

Post #9: Dec. 19-20, hospital, shopping, condos, liver enzymes

We returned to the hospital the next day (Friday, Dec. 19) for my post surgery MRI scan, a blood draw. and consult by Dr. Nicholas and his staff. This day at the hospital, went a lot better for me. The MRI went well without incident and so did the blood draw. Jean Arzbaecher, RN (essentially, the nurse coordinator for the doctors' clinical trial) went through the entire clinical trial consent form with us, step by step, explaining along the way how the whole thing works. In summary, it begins with 6 straight weeks of the standard, FDA-approved, GBM treatments that would have taken place anywhere else in the U.S. This includes what would have taken place in Fort Myers or in Indy. The schedule is for focused beam radiation to the tumor area Monday-Friday and 7 days/week, oral chemotherapy (Temodar pills) taken at night an hour after taking an anti-emetic medication (Compazine pill) an hour before bedtime.

My next appointment was scheduled by their office for Wednesday, December 24th at noon when we would meet the Lead Investigator, Dr. Nicholas, himself. After that appointment, we were free to return home to Indy for about a week. We had planned to spend the weekend hunting for a condo in downtown Chicago. It was an onerous task, driving around the city, looking and deciding on the neighborhoods and how much to spend per month. Also, trudging through icy slush of the city and in the brutally cold weather, we needed to get some warmer clothes and dry, over-the-ankle boots. So, shopping was also on our list for the weekend. We both purchased long down coats at the Michigan Ave shops that could protect us down to -50 deg F.

Then, serendipity stepped in for us. Our good friends from Indianapolis, Elaine and Bob Sandy were also in Chicago on December 19th attending a wedding very near our hotel. We met with Elaine around 6 PM and found out that also at the wedding; she had heard information from a “friend of a friend” that someone was trying to rent a condo near the Lincoln Park area for a very good price. We totally lucked out. It was just what we needed. Later, we spoke with the owner and arranged for a look-see over the weekend. It turned out to be a perfect solution for us. The price was right, the location was great, and the apartment included a reserved, indoor parking spot and a 24 hour doorman. The rental arrangement was informal (without a lease) and the owner told us we could have it for as long as we wished, renting month to month. On Sunday, December 21st we visited the apartment and I wrote a check for the first month. Our search was over. What a relief.

The only downer came when Jean Arzbaecher from Dr. Nicholas’ office called my cell (late on Dec. 19) to let me know that my liver enzymes were higher than normal and needed to come down for my final acceptance in the clinical trial. My levels were somewhere over 120. Most likely, this increase in liver enzymes was due to the heavy-duty medications that I am taking. Dilantin, evidently is a potential culprit. In addition, Jean advised me to get off any Tylenol, Ibuprofen, and all alcohol and also switched me from the anti-convulsive Dilantin to Keppra, which is less likely to cause this effect. Also, they lowered my DEX dose from 6 mg TID to 4 mg TID. The cutoff value for trial entry was 70 and Dr. Nicholas said that it is FDA mandate without any flexibility. I made the switches in meds and began hoping for the best.

Special Post for January 2nd, 2009

Special Post for January 2nd, 2009

Dear family and friends. Thank you all for following our journey through these difficult times. Although I've been metering out the story slowly, I have to interject at this time that I just found today that I have been accepted into the clinical trial. This is the best news that we received to date and the sole reason that we came to Chicago. More details will follow but we are elated.