Did they really give me anything?

I met yesterday with the T-Gen trial team in follow-up to my first treatment with the new drug. They asked me how I am doing and I had to ask, "Did you really give me anything?" Since my first infusion on Tuesday, Oct 4, I don't think I have felt any side effects. Whoopee! Maybe there will be effects as treatment procedesand the drug accumulates, but for now, nada!

Indeed I am the first (and so far only) human on the drug. It is a: Multicenter, Phase 1/1b, Open-Label, dose-escalation study of ABT-700, a monoclonal antibody, in subjects with advanced solid tumors. Another follow up next week and a new infusion every 21 days

ABT is the short form of Abbott Laboratories. I guess I am investing in the company - should I buy stock too?

First in Man

"First in man" is the term for it has never been tried in a human before. Looks like I will be the first man in this "first in man" trial of a cMet Inhibitor drug. I guess that means it made it past mice then monkeys and now Bill G. I go in tomorrow to sign consent form, blood work and CT scan. Barring any glitch I will get first infusion on Tuesday and every 21 days after. The infusion is sitting in a chair for just over an hour with the drug draining into my arm.

Since May 12 I have been on an intervention drug for only 6 weeks. That was Torisel which had intolerable side effects. The most recent scans were 3 months ago. My thoughts and feelings swing from anxious "oh no it's growing fast" to trusting the God of my understanding. The committee in between my ears yells that I am a very poor cancer patient not doing enough to fight my cancer. My heart says I am doing this the best way for my body and spirit.

Being off any chemo for the past weeks has given me a chance to notice that some of my body signals are not side effects of some drug. Rather they are symptoms of the disease. My breathing is a bit more difficult and I can feel a particular pain in left lung where one of the larger nodules must be. My hips and lower back ache some every day. Not sharp pain, just a dull hurt that wakes me at night. I find Aleve helps some but must be augmented with Tylenol. More than any other symptom, I just plain run out of energy. Some days are better and I get errands and yardwork done. Other days are mostly lounging and napping.

Way back in April 2009 my Oncologist told us there is no cure but that a couple drugs might slow the growth. At that time we picked Tarceva, the drug that indeed kept the growth slow for two years but then the growth spiked. In '09 he also said a newer drug may be coming down the pike, and he explained cMet inhibitor. I did not understand his explanation, but I do know that a cMet trial is at my front door. Cross our community fingers.

A friend of ours recently had to move out of her house and into a roommate situation, no longer able to have her 2 year old Boxer with her. So, I have been dog-sitting. The evening I succumbed to the decision to take him in, I decided to jump right in. I sat in my spot on the couch and got him right up beside me. Within 3 days, he ruled our sectional. Had to do a little retro training on that but he catches on quickly. Sit, lay down, speak and now roll over are in his repertoire and now we work on walk, stay and heel. No crotch sniffing, jumping on, licking nor whimpering for food that we eat. I wonder what he does when I am not looking?

Taking "Tanner" to the dog park is a real joy. For those of you who live in more spacious areas than the city, a dog park is an enclosed field where dogs can run freely. Tanner is learning how to play. I assumed lifting his leg to pee was an innate trait of all male dogs. Not Tanner, but I think even that he is learning at the dog park. The first couple trips a chihuahua chased him off. His big ears flapping at full run as the small dog nipped was pretty hilarious. Thankfully each trip his confidence grows. Okay, okay, so I admit it. The dog is good for me. Bill

Strikes to my Heart

Not real sure what that title means, but it seems a place to start this post. Much has been running around inside my head about this cancer - some of it is good stuff and the most is just befuddling. I went off the Torisel about 4 weeks ago. I got a canker sore two days after starting that med and 5 weeks later I still had the first and 5 more. I had never had a canker sore before, at least not in my mouth, under my tongue and back of my cheeks. I had difficulty swallowing, talking, eating, drinking, sleeping. All of that produced difficulty thinking.

So, as of this moment I have been off all cancer medication for 4 weeks. A couple days ago I met with a doc at T-Gen and I might be able to get on a C-Met inhibitor trial right here is Scottsdale. I would be the first human on the drug. I guess it worked well on rats and pre-human primates, so maybe on me too. However, that Doc led me to think I would hear from them today. It is 1pm and I feel like a teenager waiting by the phone for a girl to call me back. I am not bashful so I will call them shortly. These research doctors are not the warm and fuzzy types, considerate of patients (subjects) emotions.

Most of my adult life I have been more than willing to make a verbal stand on whatever "injustice" I perceive in front of me. At worst that has come out as verbal bullets and blades spewed at the current target, worst of all at a wife. I am "tough", but she hurt my feelings. It could be directed insanely at a fellow driver on the road who I knee-jerk think has done me wrong. I remain an expert at verbally, and subtly yet still slicing others when they are not present. We have a word for that, ummmmm, oh yeah, gossip.

Thankfully the edges of those negatives have worn smoother as I have grown in recovery, aged, and hopefully gained wisdom from the pain of my own actions. The harm I have done to others by judging them in the guise of just trying to help, improve or regulate is a fault I hope to amend in my behavior with others each day. Caution in speech for me is a skill developed by practice and does not come naturally. My friend quotes, "Will what I am about to say improve upon silence?"

That said, speaking out has also been a valued asset. It fuels the do-gooder in me that worked with abused children and today helps me sponsor damaged men. It fuels the battles I pick such as call that phone solicitor who preys on the elderly with tricky little mailings or calls of "we protect your credit cards". I confronted a driver yesterday who stopped at the same store I did, after weaving in and out of traffic nearly hitting and needlessly scaring several others on the road. Probably should not have picked that battle - the crash after the adrenalin rush hits too hard.

Sometimes I want to speak out and cannot, when reading the news. Here in Arizona the worst job is being a CPS CaseWorker. They face budget cuts, fewer coworkers, more cases, less time to make good follow up and therefore at least some of the blame for yet another child killed by atrocity perpetrated by some adult. Can you see boiled water, cigarettes, feces, clubs and starvation used as parenting tools? I once saw with my own eyes a baby withcigarette burn on the bottom of its feet, being taken from a mother screaming, "You can't take my baby. I love herrrr!!!"

These cases are not rare nor unusual. They occur embarrassingly more here than in most any other developed nation. This in the America where so called patriots scream for more cuts to govt spending in child programs, education and even food for kids. Where are the so-called pro-lifers for those babies? I wish I could stop reading about those children but it just should not hurt to be a child. I no longer can do tough political conversations any more. I cannot speak for those children. I cannot argue my point. The price in my health is too high. Cancer drugs kill more than just targeted tumors. I have hyper tension. I do not breathe as well. I am too tired too much. And my tears roll too readily. Really? I just can't write anymore right now.

How do I pray ?

I rejected organized religion for me many years ago. I was so self centered by age 12 that the scales of my decision were tipped when the entire congregation voted to start Sunday services and hour earlier. They wanted to and I did not. A shallow tipping but that was the last straw, and only twice in the ensuing 47 years have I tried "going to church" on a regular basis.

Once for a woman. It was 1994 at a near evangelical church and I went for a woman. I liked the rock 'n roll approach to the music and the words passed in a slide show above the band. My favorite was, "My God is an awesome God", and I have hummed more than a few bars many times since. Once I arrived late to find HER already there and a full house save just one seat on the front row. My seat was just a few feet from the piano positioned perpendicular to my row. The pianist was excellent and enthusiastically bobbing and bouncing to the beat as she pounded the keys. She was very hot and I was aroused. Only later did I learn she was the pastors wife. I never went back.

The second go at attending was 4 weeks in 2000 with wife number 4. The preacher's topic in week one was the blessings and challenges of sex in marriage. He spent 3 weeks expounding on that topic and did a great job of convincing me that he was a REAL person talking about real life stuff. The 4th week however, the sermon with one finger repeatedly jabbing upward as he hammered on , "There is only one way to salvation." I have just never, even as a little boy of around 7, ever believed that my Awesome God could be so exclusionary. In my young boys's eyes I was appalled that all the Indians (Native Americans) were going to hell. As I have grown older I gather that Indians (of India) are excluded too, even Ghandi.

Perhaps some of you are right, thinking I have it all wrong and twisted and my own salvation (redemption?) is iffy. Maybe you are correct in how you believe, but let's keep the door open; confident belief in ones own values becomes twisted self righteous when pressed upon others.

I do believe there is a power far greater than any of us earthlings, the power that for example had my back through many miraculous survivals. I do not claim to know the specific description or name and I feel absolutely no interest in trying to define that entity. There are many words I use to speak of that power: God; Great Mystery; My Creator; Spirit; Universal Entity; there's a few examples. None are enough to express my belief in a great power beyond my ken. How about, "The God of my misunderstanding." My Protector, Jesus, Mohammed, Bhudda, Ghandi and Mother Theresa are all best friends and model really good ways to walk. "For what is required of us but to do justice, love kindness and walk humbly with your God." Straight out of the Torah, the Bible and the Bhudda and Ghandi spoke variations of that oh too simple guideline.

So, how do I pray? As a newly clean (reborn?) adult I first prayed accidentally as I stormed feet stomping away from a job site, "Let go let God, Let go let God, let go let God." Over time that evolved to "I ask only for knowledge of your will and the power to carry that out." "Thank you" always fits in with my praying. Today my communication with my Creator may at time be very informal as in ,"Hey Dude!" Father Mother God is a favorite beginning sometimes. When I need to calm, relax, or go to sleep I might string together a few learned somewhat formal prayers, almost like a mantra near hypnotic. One favorite is:

God, I am now willing to put my life into your care. Align my will with yours. Help me to recognize and carry out your will. Open my heart that I may be a free and open channel for your love. Take away my fears and doubts so that I may better demonstrate your presence in my life. May your will, not mine, be done.

Sometimes my prayer is short, maybe even just a mindful breath, appreciating that simple miracle designed by an incredibly skilled engineer using advanced hydraulics, pneumatics, electonics, all in a spellbindingly artful manner. And of course, the shortest of all spoken prayers, HELP!

Now I lay me down to sleep . . .
Bill

Between trepid and intrepid

After using the word trepidation last blog, I had to use the dictionary. Trepidation is: "a nervous or fearful feeling of uncertain agitation". Trepid is: "timorous or fearful". Trepidant is "timid or trembling". So then of course, we have timorous, timorsome, and even timoroso. So it would be accurate to say . . . . a few days ago I had trepidation and looked trepid because I was trepidant. I could probably replace those words with timorous, timorsome and even timoroso, but they all left me wanting to go to Timor, because I was not tumor fighting intrepidly. Sometimes that is how my mind works - I have trouble following it myself.

Anyway, last Saturday, Sunday and into Monday, I felt pretty shaky about getting the new drugs drained into my arm on Tuesday. Somewhere in there however, I started talking and found the honest realization that I was scared sh*****s about what the drug Torisel would do to me. In my head I was already running out of TP, jumbled in the brain, having heart attacks and drooling on myself. Is that called projecting? Fortunately I remembered about prayer, meditation and sharing with another human being. Oh yes, going to the Bob Dylan concert Monday night helped too.

So by Tuesday morning I felt okay about sitting in the infusion chair for an hour or so at 110:30am. Turns out it required 4 drugs and 3 1/2 hours. An antihistamine against allergic reaction, some sort of nausea prevention, the Avastin to help cut blood supply to tumors, and lastly the Torisel. Torisel is hopefully good at being a "targeted therapy" hitting the bulls-eye of poisoning only my tumors. Realistically it is probably more of a shotgun aimed in the direction of the tumors.

Now it is Friday, 3 days after the infusions. My throat is a little sore, and my voice is raspy (Avastin side effect) and maybe extra achy, but I call this a "10" compared to how I felt two months ago. Maybe the side effects of these drugs will gradually increase, but so far, so good. Maybe I can ride somewhere in between trepid and intrepid, trusting God and talking with you. Thanks.
Bill

Technology for her birthday

Yesterday was my youngest sister's birthday. She died a few years ago and I miss her. But we got together and sang happy birthday - my Mom, brother and two sisters. We did it on Skype, over the internet in a 5-way conference call. This wasn't a plan, but just unfolded as we added each other to the call. It was technologically amazing yet so simple to do. We didn't have the video Skype offers, but I think we all could see Robin on that call. Happy Birthday!

I have been on vacation from chemo for two months and felt great for a few weeks. However that last 10 days or so I have felt more tired and just out of it. I do still have cancer and it is time. So my next drug infusions begin this Tuesday. The Torisel I will get every week, Avastin in addition every 14 days, and add in Zometa for my bone lesions once a month. This combination is supposed to stabilize and slow tumor growth until something better comes along. Trepidation, that's my word of the day.
Bill

Strategy

May the 12th. That was the last little white pill of poison chemo intake. Nothing since then; two months. I had a scan 10 days ago that says I have new growth and so it is time to make a move of some sort. Strategy.

Since 5/12 all of the side effects have gone away or at least decreased. I am still short on stamina, but much better. I still need to take high blood pressure meds. My hair is growing where it was just breaking off. I just now pulled an inch long sprout out of my right ear. Some arm hair and even eye lashes are going wild; making up for lost time I suppose. Acne-like skin rash has cleared so I no longer compare notes with embarrassed adolescents. My equilibrium is back enough to ride my bike, and I can feel safe driving most anytime. My appetite is back with a vengeance - 12 pounds to the belly in 8 weeks.

After 2 yrs of $850 COBRA premiums I now qualify for Medicare and I signed on with the CIGNA version. Looks like the out of pocket medical will add up to less, but paying my portion of the drugs could get crazy.

I checked out two drug trials in California, but the energy/expense of that weekly travel is just not feasible. There is a possible trial here but not yet up to speed. There may be a c-met drug trial coming to NIH where I was before, and they would take me back. C-met inhibitor is a drug category that hold the most promise for now. However, c-met drugs are not yet available. One of them has been throiugh trials and has shown strong results for PRCC. BUT WE ARE NOT ALLOWED TO HAVE ACCESS TO THAT DRUG CALLED XL880 FROM THE PHARMACEUTICAL COMPANY CALLED GSK. It is not yet approved by the FDA, and GSK will not make any money on it, so it may never be available, even if it is the last house on the block.

The drug I am looking at taking now for the short term, is an mTOR inhibitor called Torisel. It has a list of side effects. The word 'constipation' follows the word 'diarrhea' on the list, which seems humorous to me but there is nothing funny about some of the other words. However the odds are good that drug will keep my cancer growing slow enough to buy me another year or two, hopefully something better will come along by then. Problem is that I will feel pretty crappy for that year or two.

Jacki and I had a tearful heart to heart about strategy. It has been wonderful these past two months of feeling good and maybe it's best to stay off the drugs and squeeze out the highest quality of living possible as long as possible. Still, that leads to faster growth and increasing bone pain and then coughing up blood as my cancer takes me down. What if the discomfort of an interim drug does help me hold on until a medical solution evolves? If it does then great! If it does not then . . . I have a leak in both eyes, so I'm gonna stop for now.
Bill