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.
Art and Sue Smith says
Prayers for you and Jill!
Debbie & David says
Thank you for continuing sharing
Liz Jasper says
I’m a born natural cheerleader. So, GO GO GO Team!!!! Much hugs for you guys.
Betsy Covington says
I’m so grateful for this thorough update, though I’ll need to read it a few more times to fully digest it. It’s wonderful that this team is so dang good and that they’re willing to work together as a team instead of trying to cowboy off on their own. It’s also wonderful that you and Jill spend so much time studying and digesting the issues and possibilities. Truly, you’ve got to be one of the most well-informed patients around! It’s gotten you this far and will continue use to keep you moving forward. This all sounds marvelously hopeful and I’m so, so, SO glad. Yay, you!
Jo says
It is a lot to take in, Mike, but with your knowledge plus intelligence, plus the team of marvelous advisors you have, I am sure you and Jill will make the exact right decisions. It all rings with positivity, which I know is a big bonus. Prayers and love go with you every step of the way.
Beth Martin says
Continued prayers for you and Jill!
Love you both!
Warene says
I think.that is great news with a very organized team, Mike. Any kind of medical care should have such, but especially you. I pray there are no changes in The Plan going forward.
Sherrie says
I’ve thought more than once, that if I or a loved one ever faced a life threatening situation, that I would want you as my/our coach. You have not only taught us the determination needed, but the skill and finesse required to maneuver and unearth every resource for information in order to educate yourself. You called it a dust up…I call it a war. You’ve been victorious in battle after battle. You’ve had this network of yours in awe, astonished and proud. You could seriously write a self help book teaching others facing this beast… how to maneuver through the maze of info, what-ifs, road blocks and decsisions. Love you both and as always…prayers continue.
Tripp and Alice says
Mike and Jill, we are so glad to read you have a plan ! That does give you a sense of relief I am sure. It sounds like you have all the bases covered ! We continue to pray for you both….
Jim Thomas says
You continue to astound us all.
Bill and Sandra Henry says
Prayers contiue for you and Jill and your doctor teams. Blessings, my friend!
Carter says
Mike, I think it’s incredibly brave and helpful for others that you take the time to post details about your journey. It also makes those of us who care about you and Jill but live away from Columbus, a way to feel connected and to send you our love and prayers. Bless you both.
Michael Silverstein says
Mike,
Susan and I constantly pray for the healing of your body and renewal of your spirit. You truly amaze all of us and – we are so blessed to have you in our lives. May G-d continue to shine his countenance down on you and Jill.
Yours in loving friendship,
Susan & Michael
Gary Head says
This sounds like good news Mike. Our prayers remain with you
Cindi ludwig says
I truly appreciate the meticulous detail that you include in your updates. It makes me appreciate the truly gargantuan effort and challenge you are dealing with. It is an inspiration and education to those of us who have no idea of the complicated and life-consuming paths you are traveling.
Kevin Harcourt says
Mike, as always, I am so impressed with your determination and will. You are a John Wayne in my book. My heart and my prayers are with you, as you and Jill continue to battle this enemy. Good luck and God Bless !
Sandy Gunnels says
Trust me – your blog is many things but never boring! As a healthcare professional not involved in cancer care, I find it educational. As your longtime friend, I love that it lets me keep up with where you are in your war and how you and Jill are doing. I love you my friend! Sandy
Brenda French says
I love a plan too. In sickness and in health maybe words many of us have spoken but you two have certainly given them true meaning. Prayers for continued success in this battle.
Rennie & Cathy Bickerstaff says
Ditto to all that has been written. What a blessing the Munich doctor has been – truly God ordained. And you seem to be in the best ‘hands” possible, here & in TX. You would be inspiring to any cancer patient and your optimistic attitude is awesome. The prayers for the best treatment and cure continue.
Tom and Sam Gates says
Mike and Jill,
Sam and I are pulling for this to come about. I admire your determination to document this for all of us. Stay with it my friend. We pray that February 5th will be a good day for you.
Julie says
I cannot begin to know what to say and am definitely in agreement with above responses about John Wayne, God, and war. You two have got to be the strongest heroes I know personally with your unending love and support for each other. Thank you for sharing and letting us all be part of your battle cry.
Cherry Kersey says
Your spirit is amazing. I will continue lifting you both up in prayer for continued strength. My love for you both has grown over the years and my heart is invested in you.
Susan says
Continued prayers for you, Jil, the doctors and researchers you’re working with. Continued praises for your response to this place you find yourself and the sense of responsibility you feel to do even this, well!
Esther 4:14
Callie says
I, for one and probably one of many, appreciate your long, technical posts. Especially now that I’m too far away, I hang onto every word to get as full an understanding as possible of where you are, what you’re looking at and how you and Jill are handling it.
I’m relieved that you are responding to the drugs. I’m relieved that you have options beyond a big, bad back surgery. And I’m thrilled that you have a world-class heavy hitting team at home and abroad, keeping such a close watch on your case.
You and Jill are family. I love you both more than I know how to put words to. I’m looking forward to the next time I get to hug your necks, laugh at your stories, and entertain you with mine.
Peace, strength and love to you both!
Callie
Guy Sims says
So glad to read that you will have a plan and options. Continuing to pray for you and Jill.
Pat Page says
Mke and Jill, my prayers continue for you both, and for your doctors. I’d like to sincerely thank you, Mike, for being a determined spirit, as I am, and for continuing to be an informed and proactive patient. Your involvement in your medical treatment decisions encourages me to do the same in my condition. Keeping hope alive and considering individualized treatment means so much to me right now.
Thank you for sharing your true life with us.
With prayers and gratitude,
Pat Page
Kathy Garrison says
Continuing to lift you and Jill up in prayer!
Connie Jackson says
God bless your tenacity, Mike! All of your research must be enlightening, confusing and terrifying at the same time. I so admire all the work you do to keep up with the disease, the treatments, the doctors. And, I’m sure the docs appreciate having a patient who understands so much of what they are saying! It would be Greek to me, but you and Jill keep on learning that new language.
Gene and I are thinking of you both and sending positive energy your way. Godspeed!
Connie
Debra Gottsleben says
Dr. Rhines grew up here in Morristown, NJ. Know his family very well. Praying that all goes well.
MikeV says
Debra, I found him to be an absolute prince! He spent an hour and a quarter with us. Answered all our questions and I could tell he is an incredibly accomplished neurosurgeon. I’m glad he’s on my team.
Debra Gottsleben says
Mike I shared your post with Dr. Rhines’ mom. She was so thrilled to read what you wrote about her son. My thoughts are with you. What a team you have assembled.
Jo Ann Beck says
Continue to pray for you and your family. I’m so impressed your mission to share your set backs and successes and your determination giving hope to others.
Cathy Childree says
Courageous and tenacious can’t even begin to describe you. I understand that Jill is the very best caregiver you could have. I am glad that you continue to fight and have the caring heart that informs others of the options that you have explored. Praying.
Chuck Hasty says
Keep on my friend! Love you both!