Columbus and the Valley

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.

 

Microwave Ablation Completed Despite Blood Pressure Spike

Heartbeat ECG. Volumetric concept. VectorI have two new best friends as of this past Thursday. Dr. Nishant DeQuadros and Dr. Mark Pinosky.

Nishant is an interventional radiologist. He’s young, engaging, handsome, articulate and well trained. Here’s where he was trained:

Henry Ford Hospital/Wayne State University
Residency, Radiology, 2006–2011

Brown University
Fellowship, Vascular and Interventional Radiology, 2011–2012

Case Western Reserve University School of Medicine
Class of 2006

Mark is an anesthesiologist. I took an instant liking to him as he talked. He seemed focused and knowledgeable and because he is chief of the anesthesia group at Columbus Regional Health and is responsible for several offices in other states. He spent quite a bit of time with me before the procedure I had on Thursday morning, explaining what types of things they’re preparing for in a microwave ablation of a renal cell tumor in my left adrenal gland. He is board certified and licensed in several states. Here’s where he was trained:

Medical University of South Carolina
Class of 1989

Internship and Residency
Georgetown University Hospital

Thank God in heaven that my world intersected with these great doctors at just the right time. If not for them by my side on my case Thursday morning things would be very different in my world today. If I had a world at all.

Let me take you back through our decisions that led us to deciding to undergo microwave ablation to remove the renal cell metastasis in my left adrenal gland this past Thursday: My CT scan from July 22 showed that a tumor in my left adrenal gland had started growing again 23 months after I started a drug, Votrient, that kept the tumor at bay. I took the terrible drug for 15 months and stopped it in January of this year, after it became apparent that the drug might kill me. It robbed me of my dark hair, 100 pounds of my flesh, my taste buds, my favorable vomit streak and visited upon me some other even more awful things that I’ll spare you from reading.

Dr. Pippas said at the meeting after the scan that he felt a surgical option might be the route we should take. I visited with Dr. Andy Roddenberry at St. Francis Hospital and he gave us a good understanding of how serious this surgery would be: Open incision of 10″, 6 days in the hospital and a full six weeks of recovery. A lot of pain and a real solid blow to my already compromised immune system.

A few days later, after a lot of thought, Andy Pippas called me on the phone and said he had a change of heart about the direction he had advised me to take. He felt that a big surgery shouldn’t be done at this point. It was better to find a less invasive procedure that could take out the tumor, not negatively affect my immune system and still leave us with surgery as a next step if we needed it later.

About that same time, Dr. Granville Batte called me and told me about Dr. DeQuadros and his skills as an interventional radiologist. All my research told me that this young doctor had the chops to do this procedure. That he was highly skilled and he was the right person to choose to do the procedure. We went to see him and Jill and I both felt like I was in good hands with him. So we scheduled the procedure for Thursday, August 28 at Midtown Medical Center.

I had never met Mark Pinosky until Thursday morning, when he appeared at my bedside to discuss my case prior to surgery. I’m thankful he was there and all his excellent training was brought to bear to save my life when my adrenal gland sent my blood pressure into the stratosphere right in the middle of the ablation procedure.

The CT-guided microwave ablation takes place in a CT suite, not in a surgical suite. I was placed face down in the CT machine and Dr. DeQuadros used the CT to guide a needle-like probe into the tumor. In a discussion on Friday morning in his follow up visit after the procedure, he told me that he needed a four-minute burn to kill the tumor. He said he inserted the probe into the adrenal gland and started the burn.

My adrenal gland did what it does and ramped up my blood pressure and the procedure had to be stopped multiple times while efforts were underway to drive my blood pressure down. Dr. DeQuadros ran a central line into a vessel behind my knee that gave them beat by beat access to my heart.

They were able to deal with blood pressures that went as high as 300/200, the corresponding bottoms that would have followed with the introduction of powerful drugs to drive my blood pressure down, and still get the procedure completed. Both of these great doctors have promised me some time to talk about the procedure for inclusion in this blog. I want to be sure to capture my thoughts and the thoughts of the doctors about this promising minimally-invasive way to deal with RCC mets in the adrenal gland.

I’m writing this from memory and from audio recordings of my talk with doctors after the procedure, so I’ll likely revisit this after I have a clearer view of how the procedure unfolded. But, regardless of my description, the medical talent with me in that room on Thursday was brought to bear on a difficult situation to what will likely be a good outcome. So thankful to my God, my medical team, my family and my prayer warriors.

Needless to say, I’ll be in my pew this morning at St. Matthews in-the-Pines Episcopal Church. I have much to be thankful for. Please excuse this rambling post. I wanted to get something out and I don’t think I’ve been as articulate as I try to be in this space. Just wanted everyone to know that I’m OK and hopeful about what lies ahead.

 

Round Two is Over

Here I sit, finally back home, in my leather chair and completely exhausted. We stopped by the office for a few hours late this afternoon to get some pressing things done. I made a few phone calls, mostly to family, but I made one very special phone call to my friend (not my doctor at the present) Dr. John Cabelka. I’ll get to that in a moment. [Read more…]