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Cancer Treatment Enters New Phase

I-10 is no picnic. Especially with miles and miles of construction, steady rain, cold temps, fog and dim-witted drivers who somehow still don’t know that if people would just use the left lane to pass and then get back over to the right, everyone would be able to travel at their preferred speed and no one would be held up. I am an assertive, patient highway driver, but I swear to God, if I had a rocket launcher on the front of my Lexus, I would have initiated several launch sequences to take out left laners during our recent trip across half the country to Houston’s M. D. Anderson Cancer Center.

We have officially entered into a new phase of my eight-and-a-half-year dustup with kidney cancer. Let me catch you up on my treatment timeline and then I’ll tell you what we heard out in Houston.

June 11, 2009 Radical left nephrectomy + 12 lymph nodes
August, 2009 Started ASSURE clinical trial
September, 2010 Discovered 2 centimeter tumor in spine at L2, unblinded from trial
October, 2010 Biopsy shows tumor is renal cell cancer metastasis
December, 2010 Stereotactic radiosurgery of spine at Emory University Hospital
August, 2011 Spinal tumor not dead and growing again
August 19, 2011 Lumbar fusion surgery at L1-L3 at Midtown Medical in Columbus
October 8, 2011 Emergency lumbar laminectomy surgery at Midtown Medical
October 20, 2011 Stereotactic radiosurgery at John B. Amos Cancer Center
October 26, 2011 Started monthly Xgeva injections to strengthen spinal bones
June 21, 2012 Discovered 3.9cm tumor on left adrenal gland
July, 2012 13-day trip to M. D. Anderson Cancer Center for evaluation
• Brain MRI, bone scan, chest x-ray, CT scans of chest, abdomen and pelvis, biopsy of adrenal tumor confirms RCC
September 3, 2012 Started High-Dose Interleukin 2 therapy at Duke University
Hospital
September 8, 2012 Washed out of HD-IL2 therapy, due to creatinine spike
November 13, 2012 Started taking 800mg daily dose of Votrient
July, 2013 Scans show 90% reduction in adrenal tumor, have lost 80 pounds
January 14, 2014 Have lost 100 pounds, liver toxicity, have to stop Votrient
July 22, 2014 CT scan shows left adrenal tumor growing again
August 28, 2014 Microwave ablation of adrenal tumor with complications due to
300/200 blood pressure spike during procedure
September 4, 2014 Saw cardiologist in Columbus to confirm no heart damage
March 6, 2017 CT of chest, abdomen and pelvis discovered spinal met is growing
again
April 6, 2017 Started taking 60mg daily dose of Cabometyx which is shrinking tumor
June 1, 2017 Had first phone discussion with Prof. Dr. Michael Staehler, an RCC
specialist in Munich, Germany
January 9, 2018 Traveled to M. D. Anderson Cancer Center to meet with Dr. Larry Rhines, neurosurgeon.

Several months ago we were introduced to Prof. Dr. Michael Staehler, one of the top kidney cancer specialists in Europe through Dena Battle, president of KCCure, a national kidney cancer research foundation. If you’ve been a regular reader of my blog, you know that our lives have intersected with Dena’s throughout our eight-and-a-half year war with RCC. Dena connected us with her colleague, Dr. Staehler and he has been on a mission to assist us (without compensation or any kind of formal arrangement) in finding the right neurosurgeon with whom to consult. He settled upon Dr. Rhines and we went to see him last week after completing another MRI of my lumbar spine out in Houston.

Dr. Staehler has been incredibly responsive to our situation by hand picking Dr. Rhines, visiting with him on a recent trip from Munich to Houston and even reviewing over eight years worth of scans from my case file! Dr. Rhines only found out during our initial discussion that Dr. Staehler had never met us and that I am not officially his patient. He was blown away and commented that he’d never quite seen anything like that — a doctor of Dr. Staehler’s stature taking such a keen interest in the case of someone whom he had never even met. I’m sad that we missed seeing Dr. Staehler by only a few hours in Houston. I hope we can make that meeting happen sometime soon.

Dr. Staehler has shared my scans with colleagues of his in Munich and collectively, they felt we have a chance to surgically remove this tumor from my spine and possibly change the direction of this cancer with a “curative” surgery. I used the quotes because kidney cancer is an incurable disease today. This monster surgery would only cure me to the extent that it might render me NED (No Evidence of Disease) without scans seeing any evidence of disease outside of this area of my spine. My job is to try to stay alive long enough for something that could cure me to be developed. Your contributions to KCCure might help with this.

Dr. Rhines realized early in our initial meeting that Jill and I are well-educated as patient and caregiver, so he didn’t mince his words. He spoke in shocking word pictures of the risk, complexity and totality of an en bloc spondylectomy surgery. He described in vivid detail that this surgery would be disfiguring and would likely leave me even more profoundly physically limited than I am today. Dr. Rhines explained that these huge surgeries have been done to a greater degree in Europe because countries in Europe have lagged behind the United States in radiation oncology and drug therapy. So, they did these large surgeries because that was the only hope of keeping people alive in the absence of less-invasive curative radiation and drug therapy.

The en bloc spondylectomy would include the harvesting of bone from one of my legs for use in aiding my spine to heal from the surgery. This video link is of Dr. Rhines performing the operation. He told us that most of these procedures in the United States are done on patients with primary bone tumors, not on people like me with metastatic disease in the bone from another primary tumor site. Here’s why: If you recall from my timeline above, in addition to the initial nephrectomy, I’ve had two large spine surgeries and two 16-gray rounds of stereotactic radiosurgery and the microwave ablation adrenalectomy. There will be significant scarring and structural turmoil inside me from all that activity over the past nine years of being treated for cancer. Dr. Rhines described the extreme challenges standing in the way of us getting a perfect outcome from a surgery like this. He told us frankly that he would rather find other options for us that would be less invasive and dangerous. Since it has been many years since I had any radiation to my spine, that might be able to to happen. There is also immunotherapy that we haven’t tried.

Where does that leave us? Dr. Mike Gorum’s initial 2012 spine surgery continues to be structurally sound, in spite of the sad fact that the formerly solid bone where one of the titanium screws Mike installed is screwed into what is now, new tumor tissue. With the en bloc spondylectomy being such a difficult procedure in light of scarring from the former surgical activity and radiation, Dr. Rhines thinks we should consult with a new M. D. Anderson team to augment my local care. Jill and I agree that if I’m going to have a chance at any kind of normal life, we have to pull out all the stops and cover every possible angle to find the right procedures and the right people and technology to deliver them.

Dr. Andy Pippas continues to encourage us to explore our vast kidney cancer network to try to find exactly the right procedures, drug therapies and specialists to keep ahead of this disease. Andy will continue to quarterback this growing team of medical professionals going forward. We have an initial meeting with renowned kidney cancer medical oncologist, Dr. Eric Jonasch, at M. D. Anderson Cancer Center on Monday, February 5 and will likely be referred to radiation oncologist, Dr. Amol Ghia, to see if additional radiation could be used to knock down this tumor.

I really liked the way Dr. Rhines described what needs to happen going forward. He discussed our consulting with these new specialists in concert with the addition of regular MRIs so that we can monitor our thankfully stable current situation for microscopic changes. If those changes come, and we see the tumor beginning to grow again, in his words, “We’ll see who’s up.” If it is radiation, then Dr. Ghia will run with the ball, or if it is drug related, then Drs. Pippas and Jonasch will be up. If it is neurosurgery, then Dr. Rhines would take it.

At the very least, we’ll come out of this recent skirmish with a solid plan. I speak from experience, that cancer patients like it when they can see a plan. It adds a level of direction to the usual chaos of living with cancer. Despite my increasingly limiting physical condition, my mind is on fire with possibilities and my medical dream team continues to pull rabbits out of hats to keep us ahead of this disease. We left Houston tired, but encouraged that we still have dry powder for future firefights.

We continue to be thankful for the John B. Amos Cancer Center and with this latest trip out to M. D. Anderson, I am more sure than ever that it is imperative for everyone with a spare nickel to give it to the Columbus Regional Health Foundation’s efforts which are underway to renovate and update our wonderful local cancer center. Click on the link and use the drop down menu to designate your gift to the John B. Amos Cancer Center.

Because of the nature of kidney cancer and its difficulty to treat, I’m committed to continuing to write extensively about our efforts to survive and live with this disease. This disease is one of the ones that demands the patient to pay attention and be educated on their condition. I’m trying to do my part to help others with that. These posts are long, technical and can be pretty boring for the rest of you. For a patient, a post like this can really help them see what is ahead and how to attack that scary future. Being smart and responsive can go a long way toward assuring that patient even gets the chance to have a future.

Jill and I appreciate the support we’ve received from our family, friends and our life network. We feel your presence in our lives every day, especially when we are in the trenches dealing with something new like we are now. I am spending a good bit of time doing research, scheduling doctor visits and procedures and overseeing plans to update our home to accommodate our changing needs, so please be patient with me if you feel like I haven’t responded quickly enough to your inquiry. I started this blog as my main line of communication and when things are swirling, something like this is the only sane way for me to try to stay in touch with the beautiful people who are interested in my wellbeing.

 

January 15, 2018 | Tagged With: ASSURE clinical trial, brain MRI, Cabometyx, Columbus Regional Health Foundation, creatinine, CT, Dr. Amol Ghia, Dr. Andy Pippas, Dr. Eric Jonasch, Dr. Laurence Rhines, Duke Universary Hospital, Emory University Hospital, HD IL2, Houston Texas, I-10, Jill Tigner, John B. Amos Cancer Center, kidney cancer, laminectomy, Lexus, M. D. Anderson Cancer Center, microwave ablation, Midtown Medical Center, Munich Germany, nephrectomy, Prof. Dr. Michael Staehler, RCC, renal cell metastasis, stereotactic radiosurgery, Votrient, Xgeva| Filed Under: Uncategorized | 34 Comments

408 Hours

This blog was never intended to make a soul feel sorry for me. I started it as a communications channel for friends and family a couple of days before my nephrectomy. Once the surgery was over and I was in throes of sickness, still writing, and people started getting touch with me, something changed about my blog mission.

Cancer is a lonely disease. Even surrounded by families and armies of friends, the patients spend a great deal of time inside their own heads. Any shred of information about something that might make you well, save your life, make you feel better, keep you around, is precious. I have made a bunch of friends, who were that beacon of knowledge and hope for me from when I was a young pup of a cancer patient. I have spoken/written/texted some of them as early as today at lunch. They mean a lot to me.

So, I changed my tune and decided to go ridiculously beyond a communications channel. I wanted to write about living with cancer. God knows more and more people every day are forced to figure that out. It isn’t an easy process and being able to see into the lives of people who are further down the road is a good thing.

I get enough feedback to know this blog has struck a chord with my readers. This is why I write.

Oh what a difference 408 hours make. 408 hours ago I got the news of the spinal tumor. After multiple times of getting this news, the

• Shock and awe

• Sadness

• Fatalism

• Anger

• Research

• Resolve

stages are sped up. And because they take place in such a compressed timeframe, they’re more intense. This time it took me 408 hours. I think my last few blogs posts have borne that out. A half hour ago I was on the phone with Dr. Andy Pippas — the fifth time we’ve spoken today. He joked with me! We laughed and had a little best-friends-over-a-beer banter. Blue Cross Blue Shield of Alabama had an issue with the Cabozantinib prescription. Even though EVERYONE I know in the kidney cancer community, those people in the trenches keeping people alive and thriving, know that this drug is particularly good medicine for RCC patients with bone metastases.

Ain’t nobody got time for that.

My call this afternoon was the good Dr. Pippas recommending that we go back to the horse we know. Yes. I had come to the same conclusion. I’ll be starting Votrient right away. Hello 35-inch waist! And that athletic cut suit I bought from Chancellor’s — the same size I wore when I walked the hallowed halls of Hardaway High School — is waiting in a bag in my closet. I got a haircut today. Emily has never seen me with white hair. I showed her a picture of what lies ahead.

What has snapped me out of my funk? Today it was music. I’m listening to a snappy ’80s Spotify playlist that Jud Richardson posted. Today has been a productive day. I’ve got my emotional legs under me, steeling for the fight and expecting to win. This is such an emotional ride. Every day as I write these posts, I can’t believe where we’ve come from. Wicked turns on a life-sized rollercoaster.

I’m writing it because I have to.

Thank you for the life-affirming displays of love. Thank you for the prayers, calls, the cards, the incredible quotes, the offers for plane rides, Go-Fund-Me accounts. We’re not there. Not saying we won’t get there someday. But it is not today. Damn, I’m beginning to think I might’ve had a good career as a televangelist. I’m also thinking I might need to get Jill to take my computer away from me when I’m in my either of my Sad or Fatalistic stages.

Thank you for following along and we seriously appreciate your prayers and wishes for my health and wellbeing.

March 23, 2017 | Tagged With: Blue Cross Blue Shield of Alabama, Cabo, Cabozantinib, Chancellor's Mens Store, Dr. Andrew Pippas, Hardaway High School, Jud Richardson, kidney cancer, nephrectomy, renal cell carcinoma, Spotify, Votrient| Filed Under: kidney cancer, renal cell carcinoma | 31 Comments

Untethered, But Not Unhinged

This post is a stream of consciousness update. Please excuse the lack of my usual attention to the conventions of acceptable language and grammar. I’m banging this one out. Dr. Pippas walked into our exam room this afternoon at about a quarter ’til 6 and we got down to business. I think today was our longest clinical conversation of the entire 8 years of our doctor patient relationship. This brilliant, good man has never disappointed me. He called us late last night with the sole purpose of giving us a night of good rest in advance of our meeting today. He knew a word from him and the better-than-we-thought-it-would-be news about my latest wrasslin’ match with kidney cancer.

We talked for over 40 minutes, not rushed, open to our questions about what we’re dealing with, what courses of action we could see coming, how to beat it again. His usual greeting, a pitch-ascending, “Michael” then he tips his head back, engaging his bifocals to get a sharp look into my eyes. He gets right in there, knowing the eyes are the window to one’s soul. I answered back, “Andrew,” and thanked him for being the kind of physician who calls a worried patient after a brutal day at the office seeing no telling how many other worried people.

I know we’re special to him, too. We have overcome seemingly insurmountable odds together, to date avoiding life-altering, permanent physical debilitation. I’ve had multiple surgeries (left kidney radical nephrectomy, lymph nodes, corpectomy of L2 spinal vertebra, laminectomy (8 weeks later) from L2-L5, thyroidectomy, knee scope, 32 grays of radiation beams and countless hundreds of needle sticks, claustrophobic rides in giant metal tubes, gallons of barium, bucketsful of pharmaceuticals. Yep. I knew early that my job was to stay alive until something that can cure me comes along. Already there are many more drugs than were available in mid-May, 2009. We have choices, based on my case.

I made a decision on June 9, 2009 to write our way through this. Last time I tried to measure my writing output, I was north of 300,000 words. I tried to tell the story the way it went down. From December 5, 2010: “Back From the Snake Pit.”

I wanted to leave electronic breadcrumbs for the ones coming behind me. Kidney Cancer is a tough diagnosis. Faith in God, trust in your medical team, support from your friends, understanding creditors, a rock-solid marriage, children who tested us as parents, but who are always present, and loving, and engaged in our familyness. Those four sons possess characteristics that indicate our every prayer for them to be smart, kind men has been granted. What a blessing it has been to have spent relatively few hours of our lifetime as parents worrying that one of them had gone off the rails and were going down a bad road. Today I realized with complete clarity how much more difficult these last 8 years would have been if one or more of them had gone bad.

“Make good choices.”

My spine is being attacked by an aggressive, fast-growing renal cell carcinoma metastasis in my L1 vertebra. The screw that Dr. Michael Gorum put there on August 19, 2011 during spinal fusion surgery is now embedded in this new tumor. Regardless of what procedure/medication is used to kill the tumor, I will imminently require another spine surgery with longer hardware that can bridge up into my thoracic vertebrae in search of solid bone that will hold a screw. We haven’t met with Dr. Gorum yet, so this is our and Dr. Pippas’ discussion about what will be needed. The tumor has broken through the outer lining of the vertebra and my spine is dangerously unstable at the moment. No horseback riding he says. Don’t fall he says. Some quick decisions need to be made and we need them to be the right decisions. No pressure.

Tomorrow I’ll send several packets of information to several kidney cancer specialists for an independent review and some remarks on how they’d recommend we proceed. Thank you Dena Battle and KCCure. At this moment, I’m not sure where treatment will take place. If we can do it here, we’ll be at Midtown Medical and the John B. Amos Cancer Center. If we need to travel anywhere but outer space, we’ll be traveling. We’ll be praying for the right people to be placed in our path. At this moment, more so than at any other crossroads of my medical life, we will be in a state of complete faith, untethered, but not unhinged. Enveloped in God’s arms with an army behind us.

We’ll see Dr. P in 10 days. The plan will be in place by then. We left Andy’s office today encouraged by his soothing words, his sincere grief for our plight and his heartfelt hope, conveyed in looks, hugs and purposeful touch. I love him for what he has done for me and for our family. I still have both of my parents and I hate cancer for flipping our lives upside down. Jill’s mom, Betty Owens has had to live with losing a son, and because we have sons, I can imagine the emotions that our parents are living with. This isn’t the way it should ever be. It hurts too much. I want to live so that my when my parents leave this world, they will leave it without ever having known what losing a son feels like.

I want this post to speak to Ann and John: Thank you for giving me everything I needed to make it to today. You have given Eric and me a good name, a joyful home, the gift of your strong marriage and spiritual, financial and emotional support in good times and bad times. There will more good times. I’m sure of it.

Jill is by my side. Always. When she grabs my hand will her thumb or mine be on the outside?

Let’s go write our next chapter.

March 16, 2017 | Tagged With: Adam Venable, Ann Venable, Betty Owens, Christopher Riddle, Columbus Regional Health, corpectomy, Dr. Andrew Pippas, Dr. Mike Gorum, Jill Tigner, John B. Amos Cancer Center, John Venable, kidney cancer, laminectomy, Michael Venable, nephrectomy, Nicholas Riddle, renal cell carcinoma, thyroidectomy| Filed Under: Uncategorized | 27 Comments

Local Interventional Radiologists Deliver Minimally-Invasive Solutions

From the very beginning of my new normal, which began on June 11, 2009 when Dr. Ken Ogan used a DaVinci robot to surgically remove my diseased left kidney and 12 lymph nodes, I was left with an incurable case of renal cell carcinoma (RCC) and the stark realization that my job was to seek out the very best medical care I, with my great medical insurance and the shallow pockets of a small business owner, could afford. I had to use whatever medical wisdom was in existence to stay alive long enough to be strong enough to endure a more meaningful treatment if and when it came along.

To date, an initial occurrence and six separate subsequent battles with RCC mets have not managed to take me out and one of those “more meaningful treatments” was available to me locally and I have been fortunate enough to have been rendered NED (No Evidence of Disease) for the 7th time.

Here is a brief recap of the procedures (except for listing all CT/MRI scans, which have continued to occur at about 3 – 6 month intervals, depending on what was going on) and decisions we’ve made that got us to the office of Dr. Nishant DeQuadros:

June 11, 2009: Dr. Ken Ogan at Emory University Hospital performed radical left nephrectomy + 12 lymph nodes (1 positive for RCC).

August, 2009:  Started ASSURE clinical trial (Sutent/Nexavar/Placebo) and ultimately completed trial.

September, 2010: Discovered 2 cm tumor in spine at L-2, and was unblinded from placebo arm of clinical trial. Drawing the placebo arm of the trial turned out to be the good news, in that going forward I would be drug naive, allowing me more access to other therapies.

October 21, 2010: Biopsy of spine determined the lesion is metastatic RCC.

December 2, 2010: Stereotactic Radiosurgery (SRS) at Emory Midtown Hospital in Atlanta

March, 2010: Radiation oncologist says that I’m NED.

August, 2011: Medical oncologist says the tumor at L-2 wasn’t completely killed and it is growing again.

August 19, 2011: Lumbar fusion surgery and fixation with pedicle screws and fusion with bone morphogenic protein at L 1-3. Three weeks post surgery, developed severe (#10) back pain. Treated with time-released morphine and dilaudid for breakthrough pain. These weeks of pain and insomnia were the darkest days of my life. As I write this, I’m having trouble conjuring what the pain felt like. What it was like to be just aware enough to see the little hand of the clock find every click on its way around the dial, yet gladly not aware enough to be forced to remember some of the truly stupid television shows and movies I watched. Alone in a dark room with my ever-present plastic trash can, a box of tissues, a glass of water and a sack full of narcotics. The world looks very different from that room.

October 8, 2011: Some time before 5 a.m., I bent over to remove power plug from wall socket and experienced a dramatic loss of strength on my right side. I contacted my neurosurgeon, Dr. Michael Gorum, early Saturday morning. He instructed me to get to the emergency department immediately. His partner, Dr. Marc Goldman met me and we went immediately to surgery, where he performed a lumbar laminectomy (bilateral inferior L1, complete bilateral L2 and bilateral superior L3). Pain was immediately gone and according to physical therapist, the strength can be regained in legs with therapy. Two major spine surgeries within 8 weeks and a quickly-growing kidney cancer metastatic tumor trying its best to put me down.

October 10, 2011: I was moved by ambulance to the John B. Amos Cancer Center, where I was evaluated for stereotactic radiosurgery to attempt to kill the tumor in my back and returned to my room at the hospital. Got food poisoning (Yes, the day after my second back surgery in eight weeks! Can you believe it?) from a non-hospital meal I ate on Monday evening, so we delayed SRS until Thursday,

October 20, 2011: 16-greys of radiation in a single one-hour treatment aimed to kill the tumor in my spine.

October 26, 2011: Started monthly Xgeva injections to prevent further bone mets.

December 7, 2011: CT scans show NED.

March 15, 2012: CT scans show NED.

June 21, 2012: CT scan showed 3.9 cm tumor on left adrenal gland and slight enlargement of cyst in right kidney.

July 16, 2012: Decided to confer with specialists at M. D. Anderson in Houston, Tex. and met with genitourinary medical oncologist Dr. Lance Pagliaro there at M. D. Anderson.

July 17 – 18, 2012: Had bone scan, brain MRI, CT of chest, abdomen and pelvis with no contrast and a chest x-ray.

July 20, 2012: Met with interventional radiology to discuss needle biopsy of adrenal tumor.

July 25, 2012: Still at M. D. Anderson and needle biopsy of left adrenal tumor confirmed it was metastatic renal cell carcinoma.

September 3, 2012: Started HD-IL2 therapy at Duke University Hospital under care of Dr. Dan George and Dr. Michael Morse. Received 9 doses and creatinine spiked and didn’t come back to my baseline of 1.8, so I washed out. They wouldn’t allow me to finish part B of round one.

October 19, 2012: Had CT of chest, abdomen and pelvis W/O contrast, because of high creatinine.

October 26, 2012: Met with Dr. Pippas and found out adrenal tumor and nodules in kidney are stable. He recommends starting a TKI and plans to confer with Dr. George to determine which one they recommend.

November 13, 2012: Started with 800mg daily dose of Votrient. Took for 2 weeks and high blood pressure and other side effects caused oncologist to reduce daily dosage to 400mg. On 400mg dose for 3 weeks, increased to 600mg dose for 2 weeks and now on 800mg dose daily and dealing with side effects well.

July 11, 2013: CT scan of chest, abdomen and pelvis (W/O contrast) showed 90% reduction in adrenal tumor, no sign of two small right kidney lesions. Have lost 80 pounds due to GI complications with Votrient, but getting along fairly well. Have been able to stop taking Norvasc completely and have halved my daily Coreg dosage. Getting great blood pressure control, likely due to dramatic weight loss. Creatinine also looks good at about 1.5. So, might be able to get CT scans with contrast next time out.

November 1, 2013: CT scan with contrast of chest, abdomen and pelvis showed NED! Have lost 90 pounds due to GI complications of 800 daily mg of Votrient. Creatinine at 1.32 and other labs looks fantastic.

January 14, 2014: Have lost 100 pounds. Blood pressure is rising and with weight loss, this shouldn’t be the case. Hovering at around 180/115. So, went by to see Dr. Pippas to check blood pressure and they decided to triage me and work me in to see the doctor. Warned me that if I’m developing liver toxicity, we’ll have to make some changes. Had liver panel blood work done in lab. Dr. Pippas TOLD me to stop taking Votrient for 14 days and to take 20mg Prilosec every morning for next 14 days. Says he hopes my body will reset and that I can go back on Votrient after 2 weeks. Also, he added back 5mg of Norvasc to my daily meds to see if we can drive back the elevated blood pressure.

January 16, 2014: Got results of liver panel and we’re in normal range, so stopping I’m stopping Votrient for 14 days and taking Prilosec, carvedilol and Norvasc.

February 7, 2014: CT of chest, abdomen and pelvis shows completely stable and normal. Dr. Pippas says I’m NED again. Still tired, so he suggested I go back on nightly CPAP therapy and start some kind of exercise regimen. Also, wants me to maintain good immune system boosting diet and to not gain weight. At 155 pounds, about what I weighed when I left high school. Options presented to Jill and me:

A) stay off Votrient, scan every 3 months for a year
B) restart maintenance dose (either 200mg or 400mg) of Votrient

I asked Dr. Pippas to confer with Dr. Dan George at Duke, a colleague of his and someone who knows my case quite well. Also, I called Dena Battle, who knows this disease better than most doctors on the planet to ask her gut reaction to what doctor has advised. Made decision to stop taking Votrient.

July 22, 2014: CT scan with contrast shows 2.5cm metastasis on left adrenal. Same side as nephrectomy.

July 23, 2014: Discovered 2.5cm adrenal RCC metastasis and Dr. Pippas said surgery would be best option. We left the next day for a long weekend with friends in Destin, Fla.

August 6, 2014: Met with local surgeon Dr. Andy Roddenberry to discuss adrenalectomy procedure. Here’s an excerpt from my blog:

August 21, 2014: Excerpted blog post named “Eight Months:”  There is considerable scar tissue left over from the massive nephrectomy that cost me my left kidney, twelve lymph nodes and a lot of digging around looking for cancer. Additionally, the organs in my body have recognized that there is some stuff missing now that used to be there and they’ve wiggled around and taken up that space in my abdomen. So, scarring, colon, pancreas and a mass of arteries and veins are all congregated in that area, as well as a vascular renal cell tumor that is very much like a 2cm bubble of blood inside the thinnest tissue paper you can imagine. The surgery has been described to me like a person trying to pick up a balloon full of blood with razor sharp pins. One prick of that bubble and I’ve got cancer cells released all over my body and my prognosis suddenly would take a big turn for the worse.

We left Dr. Roddenberry’s office feeling the dread of making a decision to opt for a surgery that, even if successful, would really take me down physically and could significantly compromise my immune system. This is where the story gets really interesting, if you believe in karma. If you believe in a god, or if you worship from the torn front seat of a 1960 rusted, formerly white Chevrolet pickup at the 2nd Dirt Road Church of What’s Happening Now — this was the perfect information for me to hear at exactly the right time….

My friend, Dr. Granville Batte, called me and suggested we might want to meet with new Interventional Radiologist Dr. Nishant DeQuadros. That contact from a friend helped us find clarity. I promise you this: If you are a cancer patient who doesn’t have full faith in your doctor, and/or if you can’t see your a clear view of your feet along the path you have chosen, you are surely miserable. It is bad enough to feel bad, but to feel bad and be weighted down by stress related to your treatments makes the journey that much more difficult.

Here’s what I did to find that sweet spot of clarity before a new therapy: We made an appointment to meet Nishant DeQuadros and my work began. My doctors are my business partners. They provide a service that determines what is wrong with me and the crystal-clear vision backed up with the talent, experience and will to deliver a treatment path that will, at the very least cripple and at the very best in my case, completely shut down the disease process. I, and my insurance company pay them, their professional assistants and clinicians, staffs, technicians, labs, bean counters and hospitals. Then, the real work starts — research.

I fill whatever amount of time I can carve out prior to the first meeting with a new doctor with finding out everything I can about them. Where they’re from. Where they went to school. I seek out their professional writings, look for any feedback I can get from ratings sites, inquire of them with every one of my trusted medical sources and see if they have any kind of social media paper trail I can follow. I also like to find out who their friends are and if I happen to know them, I can’t pick our mutual friends’ brains to find out if they would put their life in the hands of this doctor. Melissa and Jim Thomas are friends of the DeQuadroses. That was a great thing to hear, right at the start.

I got a sweet surprise when I started vetting Dr. Nishant DeQuadros. The more I learned about him and his company, Georgia Radiology Imaging Consultants, the more excited I got. The doctors in this practice are extremely well trained. They do the kinds of procedures that are hard to come by in a community hospital setting. Often these highly-specialized radiologists are doing these kinds of procedures in larger urban or university hospitals. I found out later, just how important it was that these superdocs were here and that one of them was able to take my case.

Jill and I walked into Dr. DeQuadros’ office and a young, handsome guy in a white coat greeted us. We sat down, looked at my scans and we talked about how the ablation would be done. He brings mad experience to the table. At the end of that visit, we had that clarity that is so important.

August 28, 2014:  Interventional Radiologist Dr. DeQuadros and Anesthesiologist Dr. Mark Pinosky performed a microwave ablation of my left adrenal and its encapsulated RCC met. Complications during procedure caused Dr. DeQuadros to have to make four passes to get enough of a burn to completely finish the job. Disruption of my adrenal gland and the presence of the RCC metastasis caused a 300/200 blood pressure spike during the procedure. Because of the fear of cardiac damage from the BP spike, I spent the night in an intensive care room, so I could be monitored.

In my intensive care room the next morning after the procedure, I learned how serious the situation became during the minimally invasive operation. When they saw that I was having a major hypertensive reaction, Dr. DeQuadros ran a central line to my heart from behind me left knee, and, along with Dr. Pinosky, they monitored my blood pressure with every beat of my heart, utilizing drugs and procedures they had at their disposal to control wild blood pressure swings while still completing the procedure.

August 29, 2014: I was released with an appointment to see Dr. Shane Darrah to determine whether the high blood pressure had damaged my heart muscle.

September, 4, 2014: Saw Dr. Darrah and had stress test.

September 8, 2014: Had echocardiagram in Dr. Darrah’s office. It was determined that no heart damage resulted from blood pressure spike during microwave ablation.

October 2, 2014: CT scan with contrast (80% of dose). Still NED.

February 12, 2015: CT scan with contrast (80% of dose). Still NED.

The microwave ablation therapy I received here in Columbus was one of those cutting-edge treatments that can extend the life and protect the quality of life of a patient. In this process, I appreciated the candid advice given to me from Dr. Roddenberry that I should seek another, less invasive option that wouldn’t expose me to such a large, dangerous surgery that might negatively impact my compromised immune system. The incredible truth is that the huge surgery and the minimally-invasive microwave ablation should yield the same results (if perfectly executed). One would have cost me six days in the hospital and another six weeks of recovery. The other was performed on a Thursday and I was back in the office on Tuesday. I would have returned to work on Monday, had it not been the Labor Day holiday.

The list of vascular and interventional radiology treatments that are offered here by Drs. DeQuadros, Hart and Vo is quite long. If you receive a diagnosis that might be remedied by one of the treatments from this list like I did, you’d be wise to do a little Googleing to see if you might be better served by this type of care. Here’s the best part: When the therapy is finished, you can go home and sleep in your own bed. That is a mighty good thing.

April 30, 2015 | Tagged With: adrenalectomy, ASSURE trial, blood pressure, bone scan, brain MRI, carvedilol, Coreg, cpap, creatinine, CT scan, DaVinci robotic surgery, Dena Battle, dilaudid, Dr. Andy Pippas, Dr. Andy Roddenberry, Dr. Dan George, Dr. Granville Batte, Dr. Hoang Vo, Dr. James Hart, Dr. Ken Ogan, Dr. Lance Pagliaro, Dr. Marc Goldman, Dr. Mark Pinosky, Dr. Michael Gorum, Dr. MIchael Morse, Dr. Nishant deQuadros, Dr. Shane Darrah, Duke University Hospital, echocardiogram, Emory Midtown Hospital, Emory University Hospital, Georgia Radiology Imaging Consultants, HD IL2, Houston, insomnia, interventional radiology, John B. Amos Cancer Center, kidney cancer, laminectomy, liver toxicity, lumbar fusion, M. D. Anderson Cancer Center, medical oncologist, microwave ablation, Midtown Medical Center, morphine, MRI, NED, nephrectomy, Nexavar, Norvasc, placebo, Prilosec, radiation oncologist, renal cell carcinoma, stereotactic radiosurgery, stress test, Sutent, Votrient, Xgeva| Filed Under: Uncategorized | 1 Comment

Eight Months

metal and wood figureThese past eight months have been like heaven on earth. Eight months without vomiting. Eight months without diarrhea. Eight months of razor-sharp taste buds. Eight months of date nights with Jill. Eight months of normalcy. Eight months of cancer on the back burner. Eight months without taking a medication that costs $10,000 per month. Eight months of sunshine without being afraid of burning my skin. Eight months of the occasional taste of beer. Or wine. Or bourbon. Eight months of being able to tell people I’m doing well and eight months to thank them for their continued love and concern. Eight months of being able to work, think and contribute to our publishing company.

July 23 was the day we had a follow up appointment with Dr. Pippas to get the results of the CT scan we had the day before. What had looked like another good, stable scan took a screaming left turn when Dr. P’s eyes took in the slice that showed my left adrenal gland. We both saw the lump at the same time.

Three years ago, a discovery like this would have set me on my ear.  But, these last three years have turned me into a tough sonofabitch. Yeah, I got a lump in my throat about the same size as that tumor. Yes, I could feel the dampness in the pits of my arms. Even before I knew what needed to happen next, I knew that when cancer’s in the house, ain’t nothing good comin’ from it.

Then Dr. Pippas did what he does best. He pushed back in his chair and we talked. With a waiting room full of patients, we talked. With treatment rooms full of patients, we talked. He gave Jill and me as much time as we needed to get our heads around the fact that some drugging, some cutting, some irradiating or some other, yet unknown medical torture, was about to visited onto our family in general and onto me specifically. He gave us time to see this new challenge from every angle while we were still in the room with him and able to ask questions of the leader of our medical dream team.

Dr. Pippas said he thought surgery was my best option. “Local disease requires a local treatment. Systemic disease requires systemic treatment,” Andy would always say. So we planned to scan again in five weeks time to see if the tumor was moving fast or hanging back, growing slowly like my disease has pretty much always done. We left his office feeling like a surgery to take out the adrenal gland would be a piece of cake. Probably a robotic, laparoscopic kind of thing that I would get over quickly and get behind me.

I made a decision to consult with Dr. Andy Roddenberry at St. Francis Hospital. He is a young surgeon. Full of promise and not full of himself, which made me instantly like him. I wasn’t real thrilled with what he told me, though. Dr. Roddenberry is a skilled surgeon and after a good bit of discussion, he concluded that if we wanted him to perform the surgery, he would begin the procedure hoping for a minimally invasive operation, but we needed to know the surgery would likely not be able to be completed that way.

There is considerable scar tissue left over from the massive nephrectomy that cost me my left kidney, twelve lymph nodes and a lot of digging around looking for cancer. Additionally, the organs in my body have recognized that there is some stuff missing now that used to be there and they’ve wiggled around and taken up that space in my abdomen. So, scarring, colon, pancreas and a mass of arteries and veins are all congregated in that area, as well as a vascular renal cell tumor that is very much like a 2cm bubble of blood inside the thinnest tissue paper you can imagine. The surgery has been described to me like a person trying to pick up a balloon full of blood with razor sharp pins. One prick of that bubble and I’ve got cancer cells released all over my body and my prognosis suddenly would take a big turn for the worse.

That surgery, if it turned into an open procedure, would land me five to six days in the hospital and would require about a six-week recovery. UGH! I’ve been doing research. Asking questions of people I felt might have answers. We have been fearful of a surgical option because of my weakened immune system. Andy Roddenberry explained the concerns of surgery with a weak immune system better than I have ever heard it explained.

I know this post is getting long, but I’m on a roll now and you can just close your tablet and go to bed if you’re tired of me.

Here’s what Andy Roddenberry said. “Chances are that you have small clumps of cancer cells in other places in your body. Your immune system is standing guard over them and keeping them in check. Then, you get a big 10″ incision across your belly and suddenly those immune system guard cells leave their post and race over to the site of the incision to help your body heal. The cancer cells are left alone and they have the chance to begin to grow unchecked.” That makes a hell of a lot of sense to me. Suddenly, surgery isn’t such an elegant solution to my problem.

A couple of weeks after our meeting with Andy Roddenberry, I got a call from a radiologist friend of mine who suggested that we take a look at microwave ablation as a course of action. We met with a young interventional radiologist at Midtown Medical Center named Dr. Nishant deQuadros. Much like Dr. Roddenberry, Dr. deQuadros took us through our options in a calm, thorough discussion. We left his office feeling good about him and interested in the possibility of a minimally invasive option to remove this tumor.

In the meantime, last Friday I got a phone call from Dr. Pippas. He wanted to discuss our last office visit and his comments about surgery being my best option. After a great deal of thought, he said he wanted me to look at another option than surgery. He felt surgery would be better left as a next step, after a less invasive attempt to remove the lesion.

So, we’ve listened to all of these experts and have come to a decision. We’ve made plans to go the microwave ablation route this coming Thursday, August 28. The plan is for me to spend one day in the hospital and if all goes well, I’ll be back at work on Monday, September 2. I’m nervous, not so much about the procedure, but that this disease might be about to kick it up a notch. I have enjoyed these last eight months and I want to keep living just like that — free.

So, don’t give up on me. Keep the prayers coming and pray that the microwave ablation is a success and that it kills the only remaining disease within my body.

Now, let’s go kick cancer’s ass for the seventh time!

1) nephrectomy, 2) metastasis in spine, 3) radiosurgery in spine, 4) metastasis in spine #2, 5) radiosurgery in spine #2, 6) chemotherapy, 7) microwave ablation

 

August 21, 2014 | Tagged With: adrenalectomy, chemotherapy induced nausea and vomiting, diarrhea, Dr. Andrew Pippas, Dr. Andy Roddenberry, Dr. Nishant de Quadros, immune system, Jill Tigner, metastasis, microwave ablation, Midtown Medical Center, nephrectomy, radiosurgery, St. Francis Hospital| Filed Under: kidney cancer | 34 Comments

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