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.