Giving Thanks for Our Blessings

Team Studzinski has much to be grateful for: 

• fabulous support from loads of people including not just family, friends, neighbors, co-workers and folks from Detroit Golf Club but numerous others connected to them
• amazing amount of ongoing encouragement in the form of cards, blog comments, emails and text messages
• never-ending inclusion in the prayers of many
• excellent health care coverage providing access to the best medical care
• superb treatment located so close to home
• VEMURAFENIB - WONDER DRUG TO KMA!

On Sunday, March 18th, we will be attending the 10 AM mass at the Catholic church of St. Augustine/St. Monica in Detroit (the parish of our dear friend, Father Dan Trapp) to give thanks for all these blessings.  We invite you to join us in church as we celebrate mass (we'll be sitting near the back) and to gather with us afterward in the church's social hall to visit.  Refreshments and a light snack will be served.

 The church was built in the 1920's and is historically designated by both the state of Michigan and the federal government.  The interior is stunning.

It is located at 4151 Seminole (off I-94 near Gratiot, East Grand Blvd and Mack).  There is security present monitoring the lot and the front of the church.  We encourage you to park in the fenced lot behind the church.

We look forward to seeing any one who is able to join us and can't wait to catch up with you.  Contact us with any questions.

Believing in a Miracle Drug

Keith & I headed down to Karmanos today and I received Vemurafenib, which I shall begin taking this evening.

Hallelujah!

Anwar Sadat said: “If you don’t believe in miracles, you’re not a realist these days.”

I say "Let's all be realists."

The Long & Winding Road to Vemurafenib

Fortunately for Team Studzinski, Dr. Flaherty is the principal investigator for a new research study sponsored by Hoffmann-La Roche.  135 patients will be selected to test the efficacy of Vemurafenib in treating metastatic melanoma that has spread to the brain. Remember, Vemurafenib is the new melanoma drug that received FDA approval last August.

Enrollment criteria:

1. Metastatic melanoma spread to the brain
2. Melanoma cells have BRAF V600 mutation

• Present in 50% of melanoma patients, this mutation disrupts the body’s ability to control how cancer cells grow, allowing them to rapidly divide and multiply.
• Vemurafenib works by blocking the effects of the BRAF mutation

3. Complete various tests and screenings
4. Various signatures and approvals

Over the last few weeks, Dr. Flaherty's clinical research team has been working to enroll me as a participant as I am the perfect candidate. I clearly meet Criterion #1 and my first tumor tested BRAF positive. Done deal, right? Not exactly.


Criterion #2 proved to be a challenge as the cross section of the tumor specimen tested in August did not meet study requirements. Karmanos discovered they did not have a large enough sample from my second tumor, so they had to contact Beaumont to retrieve the appropriate cross-section from my first tumor. The sample arrived to the designated lab in Nevada on February 7th for testing. We heard BRAF positive confirmation on February 15th, the lab had a 7-10 day backlog. The timing of our Arizona vacation couldn’t have been more perfect! 


Now onto Criterion #3. The tests and screenings are required to establish a baseline used to identify the presence and severity of Vemurafenib’s potential side effects (like every other drug, the list is lengthy).

• Skin exam (2/16): check for presence of cutaneous squamous cell carcinoma (SCC), it manifests itself in 25-33% of patients.
• Pelvic/Abdomen/Chest scans (2/20): check for presence of subcutaneous SCC
• Electro Cardiogram (2/20): some patients experience a prolongation of the QTc interval in their heart cycle
• Blood work (2/20): establish bilirubin baseline as there is potential for injury or damage to the liver or liver cells (indicated by increased amounts of bilirubin in the blood)

Other potential side effects include:

• Common: fatigue, nausea, diarrhea, increased bilirubin in the blood, rash, SCC, scaly skin, itching, hives, hair loss, sensitive to light, sunburn, dry skin, joint/muscle pain, tingling/burning of hands and feet, loss of appetite, weight loss, headache, change in sense of taste
• Rare: basal cell carcinoma, hand/foot skin reaction, pancreatitis, eye inflammation, kidney failure, difficulty swallowing, arthritis

I am set to go to Karmanos Monday morning for the tests indicated above and a meeting with Dr. Flaherty and his research team. While I had originally expected to walk out with Vemurafenib, we got a call late Friday afternoon informing us that they do not have all the required signatures. I paged Dr. Flaherty and he promised to try and remedy this first thing Monday morning.

Stay tuned!

Two For The Price Of One

Even though I previously had two other gamma knife radio-surgeries, the treatment on January 30th was going to be different.  Dr. Kim (my radiation surgeon) would be addressing an entire tumor - rather than simply radiating the bed of a tumor that had already been resected.  Yet, because my recovery for the gamma knife at the end of August and beginning of December had gone fairly well, I was not apprehensive about this procedure.

In my mind, the recuperation for this latest gamma knife would be "easier".  This reasoning was based on the fact that the first and second gamma knives were proceeded by a craniotomy and this third gamma knife was not going to occur post-surgically.  Unlike when the knowledge gained during the recovery from my first neurosurgery made it difficult to contemplate a second one, the first two gamma knife experiences caused no sense of dread for the third one.  However, once again, my surmising turned out to be incorrect.

Several aspects of having the procedure remained the same - which was comforting.

• same location
• same check-in process
• same pre-op nurses (Connie & Marilyn)

A few facets had changed - which were non-impactful.

• different anesthesiologist
• different 2nd physicist
• different procedure nurse

One of the differences in the radiation routine was an improvement.  The adjustments previously made by hand screwing various arms to my head frame and removing them - which involved sliding me in and out of the machine, and sitting me up and laying me down repeatedly - was now done robotically inside the machine.

The biggest change to the modus operandi that did not bode well was when Dr. Mittal (my neurosurgeon) appeared after my stereotactic head frame had been attached and I was in the holding area waiting for the physicists to program the computer for my radiation treatment.  My gut reaction was:  "This is not good."

Dr. Mittal inquired if I was able to walk with my frame on and I indicated I could.  He invited us down the hall to "show us something".  It was the MRI from that morning that was done in preparation for my gamma knife.  He began by explaining that my smaller tumor (which we were going to leave to qualify me for the drug trial) had increased a few millimeters in the last two weeks and my larger tumor had increased several millimeters.  Fortunately, it was still feasible to radiate the exponentially larger tumor.

Hhmm - so what's the bad news I thought.  Well, it was that a third tumor (my fifth) had appeared   Even more disconcerting was the fact that it was not visible only two weeks previously from my regular monitoring MRI and it was already close to a centimeter in size.  Super.

The good news was that it was found quickly and more importantly, before my gamma knife procedure.  Therefore, I was going to have both the original large tumor and the new large tumor radiated together - two treated for the price of one.  Or at least two handled during the same procedure (as I am pretty certain our insurance will be billed accordingly).

In hindsight, having two pretty good sized tumors treated meant I had a much larger area of my brain radiated than in the past.  This explains why the recovery was much more difficult this time - although it wasn't anything I couldn't handle.  C.C. Scott said: "The human spirit is stronger than anything that can happen to it." and I agree.

While we were not thrilled by the latest development, it only served to underscore the need for me to begin taking Vemurafinib as quickly as possible.  Hopefully, this will happen sometime in the next week and this new "miracle" drug will be effective for me so I can KMA!

Hello From Arizona

Keith and I typically go on vacation each winter for approximately 12 days in February.  We stay with our friends Tom and Mary Devlin who retired to Arizona 6 years years ago.  It is the perfect situation where both Keith and I get along equally well with both of them - plus, we like to do the same things.  Keith and Tom go golfing every day while Mary and I do whatever we please: work out, shop, cook, etc.

We were scheduled to visit them from February 14th through the 26th and were obviously looking forward to it after these last 5 or 6 months.  When my latest two tumors were discovered and the decision was made to treat the brain cancer by taking Vemurafinib, it eliminated the possibility of going away.  I would need to be closely monitored as there are many side effects associated with the drug.

Since it was going to take a few weeks to complete the process to enable me to enter the drug trial, we decided to get the heck out of town while it was still possible for me to travel.  We flew out last Saturday and plan to remain here until:

1. I am accepted into the current study by formally meeting the protocol - after which, I can receive Vemarafinib.
2. We fly home on February 15th - which ever comes first.

The extra bonus is that Melissa was able to arrange to fly out here and join us (what a blessing).

My recovery from this last gamma knife procedure has been a little more problematic as compared to my first two, but it isn't anything I can't handle.  Thank goodness the Devlins were willing and able to juggle their schedule to accommodate us coming here and my doctors allowed me to go.  I feel so lucky we had the opportunity to escape for a little while - not only to my benefit, but for Keith and Melissa too.

We remain most grateful for all the continued support. The words of encouragement whether via cards or comments on the blog are greatly appreciated. Remember, the easiest way to post on the blog is as "Anonymous" and then signing your name at the end of your message.

Many thanks for everyone's prayers. We are in the planning stages for a mass at St. Monica and St. Augustine (the parish of my friend Father Dan Trapp here in Detroit) and we will pass on the details once we have a date selected.