I am fully invested in the energy of the people who are launching this initiative to find a cure for renal cell carcinoma. There is an army of us who are suffering from this diagnosis. I’m one of the lucky ones. Seven years of life on a stage IV renal cell carcinoma diagnosis is rare, I know that. Saying it like that seems almost too simple. I’m a seven year survivor, at a great, great price. More money than we could comfortably muster during the Great Recession. Only guts and a love as big as the universe for a great woman can explain why we made it to today.
If you’d like to take a few moments and get a real look into what cancer looks like, I’ll appending my cancer biography onto the end of this short post. If you just can’t help yourself and you give it a read, I hope you’ll come out the other end knowing what I already know: We are a blessed family. I am a blessed man. Much of the good sense we managed to exhibit during the past 7 years has come from the wisdom imparted by some of the people who are launching the KCCure campaign. Support KCCure if you can.
Please pardon the primitiveness of the following document. It was intended to be a 900-square-foot bungalow out in the woods. It has turned into an ugly strip mall, populated by greasy chain restaurants and pawn shops, added on one wing at a time. It may be ugly, but it is ours and we’re glad we’re still here to apologize for it.
Here ya go:
63 years of age
June 11, 2009 radical left nephrectomy + 12 lymph nodes (1 positive for RCC)
August, 2009 ASSURE clinical trial (Sutent/Nexavar/Placebo) Ultimately completed trial.
September, 2010 discovered 2 cm tumor in spine at L-2 and unblinded from trial (Placebo arm, thank God, but I knew that all along)
October 21, 2010 Biopsy of spine determined the lesion is a metastatic RCC.
December 2, 2010 Stereotactic Radiosurgery (SRS) at Emory Atlanta (went for CT simulation on 11/17/2010)
March, 2010: oncologist says that I’m NED.
August, 2011: 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-release morphine and dilaudid for breakthrough pain.
Awake at 4:30 a.m. on Saturday, October 8, 2011 and squatted down to remove power plug from wall socket. Complete loss of strength on right side caused me to fall over to my right.
Got to bed and called my neurosurgeon early Saturday morning. He instructed me to get to 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, strength can be regained in legs with therapy, which I’m doing now.
On Monday, October 10, I was moved by ambulance to the John B. Amos Cancer Center, where I was simulated for stereotactic radiosurgery to attempt to kill the tumor in my back. Got food poisoning from bad hotdog on Monday evening, so we delayed SRS until Thursday, October 20. 16-greys of radiation in a single one-hour treatment.
October 26,2011 started monthly Xgeva injections to prevent further bone mets.
Scans in December, 2011 show NED.
Scans in March, 2012 show NED.
CT scan on June 21, 2012 showed 3.9cm tumor on left adrenal gland and slight enlargement of cyst on right kidney.
Monday, July 16, met with genitourinary medical oncologist Dr. Lance Pagliaro at M. D. Anderson.
Tuesday and Wednesday, July 17 and 18 had bone scan, brain MRI, CT of chest, abdomen and pelvis with no contrast, chest x-ray.
Report at 8:30 am on Friday, July 20 for meeting with interventional radiology to discuss needle biopsy of adrenal tumor, which will be done on Wednesday, July 25.
Wednesday, July 25, 2012 had needle biopsy of left adrenal tumor. Confirmed it was metastatic RCC.
Radiology reports also confirmed likely cyst on bottom pole of remaining right kidney and two “small” nodules on upper pole of right kidney. Since CT was ordered with no contrast, no clear determination could be made about these kidney nodules.
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. 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. Met with Dr. Pippas on Friday, October 26 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, 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, 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 elevated blood pressure.
January 16, 2014 got results of liver panel and we’re in normal range, so stopping Votrient for 14 days and taking Prilosec 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 178 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
Asked that he confer with Dr. Dan George at Duke, a colleague of his and someone who knows my case well, for an opinion. Also called Dena Battle, who knows this disease better than most doctors on the planet to ask her gut reaction to what doctor has advised.
Have been off Votrient for 7 months. Scan on July 22, 2014 shows 2cm met on left adrenal. Same side as nephrectomy.
Hydration/Mucomyst on July 21, morning of July 22 before CT scan with contrast (80% of dose) and afternoon after scan.
Followed up with Dr. Pippas on Wenesday, July 23: 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, FL.
Wednesday, August 6, 2014 met with local surgeon Dr. Andy Roddenberry to discuss adrenalectomy procedure.
Quote from my August 21 blog post: 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.
Dr. Granville Batte called me and suggested we might want to meet with new Interventional Radiologist Dr. Nishant DeQuadros. Granville said there were three IR docs now at Midtown Medical. Set up meet with Dr. DeQuadros on
August 28, 2014 had microwave ablation of adrenal and RCC met. Complications during procedure caused doctors to have to make four passes of microwave heating to complete the procedure. Disruption of adrenal gland and the presence of the RCC metastasis caused 300/200 blood pressure spike. Dr. DeQuadros ran central line to hear from behind me left knee, and, along with Dr. Mark 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 procedure.
One night in intensive care department, cardiac screen to determine whether heart damage might have been caused by blood pressure spike and released on Friday, August 29.
Thursday, September 4 saw cardiologist Dr. Shane Darrah and had stress test. Echocardiagram was done on Monday, September 8. Dr. Darrah determined that no heart damage resulted from blood pressure spike during microwave ablation.
Hydration/Mucomyst on October 1, morning of October 2 before CT scan with contrast (80% of dose) and afternoon after scan.
Fell from sunroom into garage and landed extremely hard on my left hip and shoulder. Didn’t feel like a doctor visit was warranted. I mean, hell, I’ve been through a 6 and a half year war with the demon bitch cancer.
Hydration/Mucomyst on February 11, morning of February 12 before CT scan with contrast (80% of dose) and afternoon after scan.
Followed up with Dr. Pippas on XXX. Perfectly clear scans and back to NED.
Last scans, Tuesday, November 17,2015 were perfectly clear. Still NED!
Last scans, Tuesday, March 22, 2016 were perfectly clear. Still NED!
Monday, April 25, 2016 my life has changed in a great way. We started twice-per-week workouts which include yoga, pilates, cardio and stretching. The yoga and stretching has been powerful in my life. Everything about every day is better with my new found hope that I can become a physically vibrant being again. At this writing, I’ve lost 15 pounds, I have considerably better balance and upper body strength. This is good, as I will be tested in late June, 2016 with an uncharacteristic non-cancer health issue.
Friday, May 13, 2016 has 90mg infusion of Aredia. Dr. Pippas decided I should switch from Xgeva 120mg injections. Started out with Xgeva every month for five years. $3,500+ per month! Then we determined that this drug is sufficiently powerful so that injections every six months will suffice. Then with this May infusion, we’ll be doing infusing Aredia every 90 days. Experienced profound flu-like symptoms. Shaking, fever and generally felt terrible for 24 hours. Will watch these side effects.
Mid-June, 2016 am having serious left hip pain. Went to see my soon-to-be-retiring family practice physician, Dr. Clark Gillett. I have trochanteric bursitis in that left hip. It is painful, but there is another site of pain that feels like it is emanating from pelvis/lower spine. Meeting with Dr. Pippas and consultation with Dr. Granville Batte and Dr. Gillett I have A PET/CT scan with Sodium Fluoride F 18 Injection (18F NaF), a nuclear imaging test that scans the entire skeletal system and produces images of the bones. We all have concerns about RCC bone mets. Have had two major spinal surgeries and two stereotactic radiosurgery blasts because of bone mets.