Chapter Three, Part 4: First Visit with the Oncologist

This is a giant sand hill near where my middle sister lives; Dad is pictured here climbing it, which is very symbolic for the uphill battle we faced after his diagnosis.

I got to the rehab facility that night - the second night that Dad was there - and spent the night there with him, which gave me the chance to observe him in all three therapies (OT, PT, and Speech) the next morning and then to go with Dad and Mom on our first visit with the oncologist. 

Dad didn't see the sense in doing a sorting activity in OT.

Dad was very distractible during his therapy sessions; I hoped it was because I was there and he just wanted to chat with me, but I had a sinking feeling that the reason was much more involved.  The OT had Dad match cards and sort little trinkets into piles to work on his dexterity with his left hand, visual perception and scanning, and a host of cognitive skills like following directions, short-term memory, and decision-making.  I knew that Dad wouldn’t see the point (have I mentioned that he hated inefficiency?), but I didn’t see what happened coming.  He worked on the sorting activity for just over one minute and then said he felt nauseous.  I had never in my life seen my dad quit something without giving his all; this is the guy who ran through extreme leg cramps and heat exhaustion to finish races.  In fact, when he was hit by the car and taken to the hospital with a broken leg, he was mad that he couldn’t finish the race!  He told the OT that he needed to go back to his room to lie down, and, as I pushed him in his wheelchair, I was alarmed, frustrated, saddened, and frankly scared that he had bowed out so early in the session; as tough as it sounds for me to think this, I hoped this wasn’t a sign of things to come in the future. There was a thin line, I discovered, between wanting to protect Dad by pampering him and pushing him.  Either way, there was risk and there would be concessions.

After he rested and had lunch, Mom and I loaded Dad up in the car and drove to the oncologist’s office about 15 minutes away.  We met the nurse practitioner, whom we were told would be our first point-of-contact in most cases.  She and the oncologist presented us with treatment options, all of which I noted in the Notebook. All of the options were complicated, and, of course, none of them guaranteed anything.  At that point, I was waiting with baited breath for one that seemed to offer the biggest payoff, looking at the “best case scenario,” as Dad liked to say.

The first option was considered to be the "standard of care" – the protocol that is typically accepted as being the best type of treatment established for that particular type of cancer at that point. For GBM patients like Dad, an oral dose of chemo and radiation are given.  Radiation lasts for 6 weeks, and the chemo pill is given for 5 days per month for at least 6 months.  The oncologist said there were very few side effects or risks to the chemo pill and that the goal would be a cure but that the treatment typically isn’t; if remission is achieved, the cancer almost always returns.

Behind Door #2 was something that was relatively new to the scene of cancer treatment:  Avastin, an angiogenesis inhibitor, which means it interferes with the growth of blood vessels feeding a tumor.  Avastin has been around for almost a decade and is FDA-approved as a treatment of some types of advanced colon, lung, and kidney cancer and for recurring GBM, but not for initially-diagnosed GBM like Dad had at this point.  (Side note:  it was previously approved and used for treatment of some types of breast cancer but has since been taken off the approval list, which remains a very controversial issue among many in the breast cancer treatment arena.)  It has many risks, most of which are related to bleeding, like stomach ulcers and brain bleeds (strokes).   The intent is that it starves the cancer cells so they stop growing or, best case scenario, die off. 

The oncologist called Avastin “remarkable;” I wrote it down in the notebook and started to see a glimmer of Hope.  “The problem,” he said, “is that since it isn’t FDA approved for this phase if this type of cancer yet, insurance doesn’t cover it, and it’s very expensive – it runs about $20,000 per treatment and is given every three weeks, indefinitely.” 

Mom and I were speechless.  Dad managed to get out a “Wow!” which was a good sign to me because I hadn’t been sure that he was paying attention and/or processing all of what was being explained prior to his comment.  “I’m not rich,” he said, before Mom or I could say anything. “I have some money and some investments, but I’m not going to jeopardize my family’s future for something that isn't even a sure thing.” 

“I completely understand,” the doctor said, “but let me tell you about another option related to Avastin.”  He said he was currently accepting GBM patients into a clinical trial and could get Dad in if we so chose.  In this study, half of the patients receive Avastin to add to the standard protocol discussed in Option #1 (oral chemo + radiation); the other half of the patients get the standard protocol treatment but get saline instead of Avastin.  And here’s the Real Rub:  the doctor and his staff and the patients and their families don’t know which group each person is in (that’s called a double-blind study).  That’s rolling the dice like never before. 

I expressed my concern about the gamble.  “There’s one more thing I need to let you know about,” the oncologist said.  “The protocol that involves using Avastin was developed through Duke University, and they have been continuing to run clinical trials with it on initially-diagnosed GBM patients.  I don’t know if they have any new trials starting up or if he would qualify to get into any even if they do, but you could try contacting them to find out and that way he would definitely get the Avastin and its cost would be probably be covered by the money for the trial.” 

“What would you do if it were you?” Dad asked the doctor.

“I’d go to Duke,” he said, “if they could get me the Avastin.”  He handed me a pile of information on Avastin and told me to find out what I could and call him next week to let him know if we were going to North Carolina.  And thus began The Get Dad to Duke Crusade.