Monthly Archives: March 2012

No Clinical Trial But Good News

We got a call from U. of FL this morning saying that Gorman’s tumor did not contain the protein EGFRvIII so he does not qualify for this clinical trial.  This was bad news/good news.    Here’s the thing:  if a tumor contains that particular protein, it can quickly rebuild itself after chemoradiation, basically negating the effect of the treatment.  Therefore, it’s really good news that he does not qualify……..and God continues to open some doors and close others.  Charlie and Grady continue to research all the trials out there so we continue to hope.

We thought this would be Gorman’s last week of radiation; however, last Friday the radiation machine malfunctioned and he was not able to receive a treatment so that puts us over into next week and next Monday, April 2 will be his very last day of radiation.  He’s still doing pretty well; some fatigue but naps take care of that; some nausea but nothing too bad.  As expected, the right side of his head (focus of the radiation) is getting fairly red and irritated-looking, especially around the incision but I’ve been putting antibiotic ointment on that area and that is helping.  He continues to have a good appetite and his weight hasn’t dropped.

Let me make a correction to my last post.  When I referred to the folks attending Fairhope Arts and Crafts Festival, I left off a zero.  Actually there were 300.000 people here that weekend!  I’m glad we were at the beach.

Another Clinical Trial Possibility

As our son, Charlie, continues to look for a clinical trial that would suit Gorman, one has turned up at University of Florida in Gainesville and it sounds very encouraging, IF he qualifies.  It is referred to as EGFRvIII and is being conducted at 200 sites worldwide.  It’s complicated: about one-third of glioblastoma tumors (that’s what Gorman has) contain this protein called EGFRvIII.  This clinical trial involves an experimental vaccine that, hopefully, activates the immune system to fight the cancer.  This trial is in Phase 3, which means it has shown promising results thus far.  As with so many of these trials, this one is a randomized, double-blind trial so two-thirds of the participants will receive the vaccine and one-third will receive a placebo.  As frustrating as it is, that appears to be pretty standard procedure for clinical trials.  So first of all, Gorman has to fall in that 30 percent of GBM tumors containing the right protein (EGFRvIII).  We should learn next week if he qualifies.  Then we have to hope that he’ll be among those receiving the vaccine.  He has made me promise that, if he doesn’t get in, I will not fall apart like I did over the UAB trial and I have dutifully promised that I won’t.  I like to think I’m stronger after that first experience; at least I hope I am.

In the meantime, today we began week five of chemoradiation.  We’re glad for the treatment but will be happy when the radiation part is over.  It is wearing him down.  This past weekend, when 30,000 tourists descended on Fairhope for the annual Arts & Crafts Fair, we left and went to the beach, where we did absolutely nothing but sleep and rest.  It was a nice little gift from God.  And now we’re back at it, kicking this cancer in the #*#*!!

Who Says It’s Too Warm For A Fire?

Both Thursday and Friday nights we enjoyed a fire in our fireplace.  Yes, it was 55 degrees outside but we find that fireplace so comforting; however, I do think we’ve now reached, really reached, the end of the season.

On Saturday, Gorman didn’t feel so great.  After five straight days of radiation, he’s worn out and always glad for the weekend break.   Even though we are celebrating reaching the halfway mark (three weeks), he is beginning to experience the cumulative effect of so much radiation.  Let’s just hope those cancer cells are also suffering from that cumulative effect!  Anyway, after going out for a big breakfast at R Bistro, he spent the rest of the day in a prone position watching the SEC basketball tournament (recorded).  Yesterday he was back to normal and felt great but last night he didn’t sleep well so he’s sleeping in this morning.  It’s thundering and raining so it’s the perfect morning for that.  Maybe he needs to return to taking the steroid pill everyday.  Well, we knew this wasn’t going to be easy.  It’s now 9:45 and I need to wake him up as he has his treatment at 11:30…….and we begin the fourth week.

A Sense of Normalcy

We are halfway through the third week of treatment and hobbling along.  Gorman continues to feel good so we try to find blessings in each day – the first sip of morning coffee; our morning prayer time together; this lovely paradise in which we live that is now overflowing with blooming azaleas and the fresh green of new leaves on the trees; an evening fire right up until last week when it was just too warm for a fire.  And we especially are blessed with wonderful friends who continue to care for us and pray for us and the love we feel from our dear St. James church.  The Thursday morning healing service is another blessing.

We have found the best way to deal with this disease and all its unknowns is to follow that old AA adage, “One day at a time”.  God continues to give us strength and courage for the day but not for the year.  It’s when we try to jump out ahead and anticipate future events that we crash and then we have to pray and go back to walking this road today.  I guess it’s a discipline to be learned.  However, we are trying to be smart, meeting with lawyer, financial planner, etc. and making sure everything is in order.  A couple of weeks ago, we went through the safety deposit box at the bank and  Gorman walked me through all the files and papers in his study so I could find everything if need be.  Unfortunately my head is so frazzled these days that I’m not sure it did much good.

This morning after the healing service in our beautiful little chapel, we walked through a path of blooming azaleas and into the St. James Memorial Garden and decided we want to be cremated and have our ashes interred there.  I used to think that I would want my ashes sprinkled over Mobile Bay, which has been special to me all my life but I want to be with Gorman and St. James is a very special place for us.  Anyway, making these arrangements now will save our children a lot of trouble.  For years I’ve mentioned to Gorman various hymns that I want sung at my funeral, so many that it will be a veritable songfest.  Gorman will want a dozen versions of “Amazing Grace”.  In fact, when we visited Grace Cathedral  in San Francisco last year, he bought a CD with nothing on it but variations on that hymn.  He plays it in his car all the time.

Boy, I’ve gotten way off track here.

At this almost halfway point, Gorman’s hair is starting to fall out, just around the area of the incision and where the radiation is aimed.  It was all over his pillow this morning!  He still looks as cute as a bug’s ear.  He’s getting a short haircut today to even things out.

And we’re off to treatment………..