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.

 

Still Tribulations, but at last, no Trial

I visited my oncologist, Dr. Andrew Pippas, yesterday for the final checkup for my 54-week ASSURE clinical trial.  After having my CT scan on Wednesday, it was time for a follow up and time to find out what comes next since the clinical trial is over. I took the last two pills on Monday, August 30 after taking eight pills a day for 54 solid weeks. I have been sure for some time that the pills I’ve been taking are a placebo and not a therapeutic drug. The good news is I’ve had 54 weeks of normalcy without having to deal with potentially devastating side effects from a drug that might not have helped me at all.

Here’s my take from the trial: I had to spend out of my own pocket (and my insurance carrier’s pocket) several thousands of dollars for the MUGA scans, CT scans, office visits and drugs that were related to the trial. That’s the bad news. The good news is I’ve completed a clinical trial and have provided data points which will without a doubt offer researchers another glimpse into how people with kidney cancer react to treatments that could prevent the cancer from reoccurring. In that sense, I’ve done a good, although expensive, deed for mankind.

Other than that, I’m finished with cancer. I’ll have CT scans every six months for the next 18 months. I’ll have regular doctor’s visits along the way and I’ll absolutely set out to beat the odds I was given yesterday. Considering the surgery I had back in June 2009 and the stage/grade of my cancer, I have a 20%-30% chance of my cancer returning. And, if it comes back, it will likely be in my lungs, bones or brain. And, if it comes back, I’ll be going to Duke University Hospital for a treatment called HDIl-2, high-dose interleukin-2. Dr. Pippas has all bases covered and I’m comfortable with that and the diligence with which he’s attacked my cancer.

I have enjoyed the feedback from people who have seen the John B. Amos Cancer Center ads that have appeared in the newspaper, magazines and on television and billboards. I’ve been happy to be a spokesperson for the institution that has been so sorely needed in our region.

Don’t expect me to disappear. I found out a few days ago that I’ve been selected as the 2011 American Cancer Society Crystal Ball honoree! This is great news for me, my family and all the survivors out there whom I’ll be representing. My job is to help an extremely capable committee, led by uber-salesperson Debbie Seeley, raise a mountain of cash for a cause that has destroyed people, families and the pocketbook of our nation.  When I come calling, please be prepared to help in any way you can. I hope we’ll see a big crowd at the celebration on March 19, 2011 at the RiverMill Event Center.

With this blog post, I’m testing a mechanism to notify an extensive and important email list. If you received a notification of this blob post via email, you are one of the faithful army of people who followed me for the past 15 months on my CarePage cancer blog. It is important to me to stay in touch with this awesome cadre of supporters. I hope you will stay with me as I move into a different phase of my efforts to stay healthy and beat cancer.

Quiet Period

My last post was April 21. Today is May 31. I apologize for the apparent lack of respect for my readers. A lot has happened since my last post. Most of it you wouldn’t care about. That is, for me, the exciting part. There aren’t any ghastly, life-changing or interesting medical situations to report. When you’re a cancer survivor that’s what you hope for — mundane, just-like-everyone-else days without needle sticks, blood draws and face time with people in white coats. I hope you’ll respect that I just needed some time to forget about medical things like making co-payments, filling prescriptions and lining up tests and procedures. Thanks be to God, I am now winding down my participation in the ASSURE clinical trial (end of 7th of 9 rounds) and my scans are on an every 6-month schedule. The down time has been good for me and for my family. It has felt good to put down the moments of sheer terror and replace them with a few hours of medical boredom. Medical boredom would suit the hell out of me for the remainder of what I plan to be a long, long life. I hope God has that same plan for me. I love it when a plan comes together.

During this down time, I have remained focused on getting back into shape. I still follow a mostly vegetarian diet and Jill and I have joined our fantastic new YMCA and have participated in a number of exercise classes. Yoga, spin, body pump, Zumba and turbo kick classes have been interesting and exhausting. My weight is down about 25 pounds from where I began on 12/31/09 and it is holding steady and dropping very slowly (which is what my nutritionist and my nephrologist want).

I was in the office one day and my phone rang. My friend and coffee guru, John Woodward, was on the other end of the line and he said, “I’ve got something to tell you that I think you’ll be interested in.” That phone call has spawned a new hobby, a big, after-cancer physical challenge and another thing for all my sister-wives at work (Jill, Marquette, Helena and Callie) to nag me about. I’m training for a once-in-a-lifetime two-week river adventure that will begin on my father’s birthday this fall. I, along with 30-ish other people will be paddling from Columbus to the Gulf of Mexico in sea kayaks. We’ll go down the Chattahoochee River, through 2 sets of locks into the Apalachicola River and right out into the Gulf of Mexico. This is exactly what I needed to provide me with a physical goal to really get back into shape.

I accepted the challenge before I had ever even set foot in a kayak. I have now been out 4 times and am getting accustomed to paddling and being inside one of these sleek, tippy boats. In case you didn’t know, the Chattahoochee Paddling Club is a well oiled machine. The club has 40 or 50 members and has a great Yahoo Groups website, a full calendar and holds interesting meetings that teach people about the wonders of kayaking. Here is a link to the club’s website. You can go there and see what is available for people with an interest in paddling.

http://groups.yahoo.com/group/ChattahoocheePaddlingClub/

Last Saturday, the club sponsored a Strokes class, which was a 4-hour training session on the various strokes a kayaker needs to have in his/her arsenal. This Saturday is the Safety/Rescue class where the all-important means to rescue oneself will be taught — and I hope learned. The people whom I’ve met are some of the nicest people I’ve ever met. Having them in my life has added a wonderful new dimension to a life already busting at the seams with good friends. I’m looking forward to the trip and the opportunity to showcase some of the wonders of the river system in Columbus and the Valley magazine. More later on this subject.

One of the added benefits of this trip will be an opportunity to do some bonding with a new acquaintance, Gary Bayer, who is also the husband of Jill’s cousin, Jane Bayer. Jane is newly employed at the National Infantry Museum and Gary is a clinical psychologist. They recently moved here from Memphis and are busy putting their roots back into Chattahoochee Valley soil. Gary is an interesting guy and is all about a trip like this. He is a resourceful adventurer and is a lot of fun to be around. I know we’re going to have a ball on this trip. I also have found a mobile battery for my cpap machine, so it looks like the rest of the campers on the trip will be able to hear a snake sneaking up on them.

Again, thanks for bearing with me during a brief, but much-needed quiet time. There will be a lot to tell as I prepare my mind and body for a 265-mile paddling adventure. I’ll be blogging my way along the trip. Should make for some interesting blog posts. The best news is that there will also be some incredible photography to go along with my writings, because local photographer, Mike Culpepper, is also planning to go along for most, if not all, of the trip! I can’t wait to see what his accomplished, photographic eyes will see.

Big Day

Tomorrow, Tuesday, April 13, is a very big day for me. I know some of you have been waiting to hear the results of the lab work that I had done over two weeks ago after 90+ days on a vegan diet. Tomorrow is the day I’ll more clearly know about many things regarding my health. Tomorrow is the day I’ll see my nephrologist, Dr. Raj Alappan. He’ll interpret those tests for us. [Read more…]