March 1 - New Quarterback and Q&A

Update:  Today started early at Piedmont Hospital with Dr. Dunbar.  She is our new and only Quarterback. She has a wonderful team and access to the entire league. She explained everything with diagrams and pictures.  She works with MD Anderson and Northside Forsyth.  She is the only one that truly explained how trials work.

We then headed to see Dr. Simon in Forsyth for Phil to have his face mask custom fitted for radiation. His dad was an Engineer for GE for 30 years. F-35 was a topic the first ten minutes.

BP:  125/82    

Thank you Swim Atlanta Masters Team - you guys are amazing!!  We love the caps and all of you. See you in the pool this Friday!

Q&A

1.  Why wont anyone operate?

See the diagram.  #1 and #2 is where the tumor is located. They are attached, it is one large mass which is 2" below the scalp measuring 5cm.    #1 is the center of the brain and connects the left and right side together.  Think of wiring.  If it is cut or breaks.....this is why no surgeon will touch it.  Too risky.  #2 is where the tumor is also.  The only reason they would operate on this section is to "debulk" it only or to get extra tissue for future trials or treatments.

2.  What about trials?

Phil is not eligible for any trials at this moment.  There are currently 4 trials for newly diagnosed GBM patients. Two of the four are currently on hold.  The other two are closed. Dr. Dunbar has the Master List of Open trials throughout the country.  Due to the tumor that is in the center, this automatically will eliminate Phil from majority of trials.  However, after radiation there may be a trial just suited for him.  We will be informed by Dr. Dunbar only.

3.  When does radiation start and what is the process?

Phil had his fitting today at Northside Forsyth.  They placed a wet mesh over his face and let it dry for 10 minutes. They now have a mold of his head.  Dr. Simon will now plan out a radiation map of exactly where they will target the radiation.  This takes about 5 days. Radiation should start next week. Radiation is 15 minutes, 5 days per week for 6 weeks. Phil will receive the maximum amount of radiation. I asked if I could sit with him during radition. Yes, I did.  Answer was absolutely not, he will be in a vault by himself.  They will have video on him and I requested soothing music for him. She is glad I mentioned that because the young techs put on rap and current "music".  I just want him to be comfortable as possible.  He lays down with the mask on and they screw the mask into the table so he will not move.  He did a dry run today and he said it was quite uneventful.

Marla and Kia adore Phil!

4. Will he lose his hair?

He will probably lose his hair only where the radiation will take place.  Phil said it was about time anyway according to his less hirsute peers.  He wants a cowboy hat.

5. Why don't you go to MD Anderson, Duke, or Dana Farber, etc.. for treatment or trials? 

We have investigated and sent images and scans to all of these locations plus a few more.  We received a call from all of them that no one will operate but come visit anyway for a 3-day consultation. Dr. Dunbar has direct access to all of these locations for any clinical trials and it would be a waste of time to spend 3 more days for more consultations and missing out on much needed radiation.  We will get the same treatment of radiation here.

6.  When does chemo start?

Chemo is in the form of a pill.  FedEx will deliver the 30 day supply of pills tomorrow.  He will take 2 pills - one at 140 mg and the other at 40 mg. Phil will start the chemo pills the same day he starts radiation.  Thank goodness for insurance.  The pills are 5k per month and we only pay $430. Apparently 5k is not bad according to what other cancer patients pay.  Ridiculous!!

7.  What can we do for you?
Well, Dr. Dunbar looked right at me and said to get some rest.  Phil also needs to rest and alot of TLC.  No problem there!  Continue meditation, good nutrition and positive attitude.  She also was adament that I stop researching and listening to everyone else. Stop filling paperwork out for every single hospital in the country.  Even though we are appreciative and love the advice, it is overwelming.  She is our only quarterback from here on out. She gave me a great example.  Take 4 identical Phils with exact same diagnosis and treatment.  Every single Phil will react differently to the treatment and have a different outcome.  Do not look at statistics.  You are unique.  Phil will write his own story and we are only in Chapter 1.