Mark Nordeen

First post: Jun 8, 2018 Latest post: Aug 11, 2019
Welcome to our CaringBridge website. THERE IS NO NEED TO DONATE MONEY. We are using Caring Bridge to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. If you click on FOLLOW on the button in the upper left corner you will be notified of when an update is posted. 

Mark was diagnosed with kidney cancer December 2013. He progressed to stage 4 (incurable) in 2014. We have done clinical trials,  surgeries, radiation, immunotherapy and ‘chemotherapy’  to prolong his life. 
I will post updates in the Caring Bridge Journal section and on Facebook. 

History in detail if you’re a person who likes details, or a fellow RCC warrior who will find the details helpful...

Thanksgiving 2013 Mark peed blood. Dr  @ Allina diagnosed likely UTI and told him not to worry. This was the start of Elise's advocacy =pushed for urology consult and CT. Dr Curt Behrens @ Suburban Radiology called to go over the scan results with Elise which showed large left renal mass. We were shocked. Mark felt otherwise healthy.  (Dr Behrens has continued to read every one of Mark’s scans. Consistency of radiology has been beneficial)

In 2008 Mark had (his second 😜) vasectomy and at that time was noted to have a varicocele that did not remitt when he was laying back on the table. This is pathonomonic for a renal mass causing obstruction, unfortunatly neither Elise or the doctor doing the vasectomy knew that at the time. Mark then had a 2 month period of fevers,weight loss, night sweats, fatigue going into 2009. In retrospect that was the start of his kidney cancer...

12/12/2013 NEPHRECTOMY Dr Streitz. Diagnosis left nephrectomy for 10 cm RCC- clear cell stage 3/grade 3=NED

2/2014 Started clinical trial of adjuvant Axitinib w/ Dr Stuart Bloom @ MN Oncology. Later learned Mark was in the placebo arm

3/2014 Scan suspicious for abd lymph node met. CT guided biopsy showed no RCC

6/2014 Scans show PROGRESSION-right adrenal mass (CT guided biopsy showed RCC)

7/2014 Surgery to take out right adrenal gland. Dr Cassandra Anderson @ Abbott. Afterward he felt great, back to work teaching GED students, working out, traveling, hiking

10/2014 Scans show extensive PROGRESSION-new lung met, 17mmx20mm pancreatic mass that enhanced on PET, cyst/spot on remaining kidney. Mark’s cancer is now considered incurable.Elise starts researching options

11/2014-1 (tel:11/2014-1) (tel:11/2014-1 (tel:11/2014-1))/2015 Intense, toxic therapy High Dose IL-2 @ Univ of MN under Dr Jha. Completed 4 one week cycles for total of 41 doses (11,11,11,8)

3/2015 CT follow up shows PROGRESSION LUL nodule resolved, RUL nodule 2mm growth, pancreas 2mm growth, 2 new presumed mets on remaining kidney (But we discovered previous follow up CTs were not done via 'renal mass protocol' not multiphasic, did not have arterial phase, which is where kidney mets best show up.) We're pretty devastated. Though we know it was a tiny chance that IL-2 would work, it was so tough to get through we were really hoping for a response.

3/2015 Consult @ John Hopkins w/ Dr Hans Hammers

4/2015 Started clinical trial Bevacizumab/ Avastin +MK-3475 (now Pembrolizumab/ Keytruda) flying or driving to Chicago every 3 weeks @ Univ of Illinois w/ Dr Arkadiusz Dudek through 3/2016

5/2015 Scans show STABILITY resolution of smaller lung mets, shrinkage of kidney and pancreas mets, over all 48% tumor mass shrinkage. Partial responder with stability for now. Side effects= fatigue, muscle skeletal pains, nose bleeding=not too bad

4/2016 Clinical trial opened site at University of Minnesota. Seeing Dr Jha. So nice not having to fly or drive to Chicago every 3 weeks!

5/2016 Suspicious mouth lesion biopsy- hyperkeratosis NO RCC.

5/2016 Severe debilitating acute arthritis, arthralgias, myalgias--but recovered w/o steroids. Elected to continue treatment with immunotherapy and the severity didn’t recurr, though arthritis persisted for the duration of treatment.

7/2016 Scans showing STABILITY at almost 50% reduction from tumor mass at start of Avastin + Keytruda clinical trial. Mets in lungs, pancreas and remaining kidney. Side effects increasing:Fatigue requiring daily naps and 10 hrs sleep per night to function-Ritalin helps. Also arthritis causing limp, discomfort sitting-acetaminophen helps

11/2016 PROGRESSION of 2 lesions in kidney and mets on uncinate & tail of pancreas~22% increase in the 6 weeks since last scan...End of clinical trial, we had a good run of 19 months of stability with a good quality of life

12/2016 Consult Dr Hans Hammers @ UTSW

1/2017 Head MRI PROGRESSION rapid presentation of skull metastasis 2.6 cm lytic area-radiation to met 3Gy x10  by Dr Cho @ U of MN (in retrospect wish I’d have known to push for higher fractionation, at least 5 Gy or above)

1/2017 Cryo ablation to kidney mets in remaining kidney by Dr Kyle Anderson @ University of MN

3/2017 Start Cabozantinib, only got 13 days. Had to stop due to severe erythema multiforme rash (could progress to life threatening)

4/2017 scan shows RESPONSE 50% decrease in tumor mass after just getting 13 days on Cabo!

4/2017 started Axitinib titrated up to 10 mg twice daily= severe GI side effects, dehydration, rapid weight loss. After 5 day break to restart and tolerating 7 mg twice daily

8/2017 Head MRI showed PROGRESSION new skull-dura met and progression of previous to 5.5 cm. Considered radiation resistant? Xgeva started q 6 wk (stopped Dec 2017)

8/2017 Tolerating Axitinib 7mg AM 10 mg PM. Side effects=diarrhea, nausea, vomiting, fatigue. Mark has lost 30 lbs. We're having lots of pizza and icecream to try to keep weight on him. He works hard to adjust to another “new normal” and stay positive

12/2017 Scans show PROGRESSION Axitinib failing. Growth in met within skull lung, pancreas & kidney sites

1/2018 consults w/Dr Hammers, Dr Nedzi @ UTSW and in St Paul,MN Dr Dudek. Plan to emulate the RADVAX clinical trial underway that has prelimarily shown hopeful results. Will require multiple trips and time in Texas

2/2018 Prolonged stay in Texas. Rad Onc Dr Lucien Nedzi-radiation to met inside skull & skull met previously treated. (10 Gy x 5 fractions)Dr Dudek @Regions in St Paul MN for Ipilumab/Nivolamab infusions. He tolerated all 4 Ipi doses.

3/2018 Extensive PROGRESSION new lung,liver, abdominal lymph and muscle metastasis. Head MRI shows progression and brain bleed. Mark currently has poor quality of life. Mostly resting. Sleep difficult due to increased intracranial pressure. Pain meds wearing off before he can have next one. Consult Paliative Care. I’m not sure at this point he’ll make it to June. He strongly wants to do whatever we can to prolong his life, including taking risk of serious side effects.

4/2018 START Levantinib continue Nivo every 4 wks. Within 10 days I could tell it was working as Mark's need for pain meds decreased, he was able to sleep comfortably and gained energy

5/2018 CT shows RESPONSE reduction in all mets; Unfortunately MRI shows new PROGRESSION brain metasisis and another subdural hemorrhage

6/2018 Head MRI shows stability of all 4 metastatic sites, no new brain bleeding. Mark's quality of life is good. Side effects=fatigue (needs to nap every afternoon and go to bed by 7:30) and mouth sores.

9/2018 PROGRESSION—MRI shows 2 new left brain mets w/ growth of previous one (But not the mets on the right that were radiated UTSW last January those are stable for 9 months) CT body mostly stable, new mets in lungs and remaining ureter

9/2018 UTSW Dr Lucien Nedzi-Gamma Knife neurosurgery on the 3 left cerebral cortex lesions, plus 2 new ones found that emerged (?)in the 17 days since last MRI.  Dr Hans Hammers conferring with our local oncologist Dr Dudek for our next plan as current therapy seems to be failing. Right now holding Nivo to minimize potential autoimmune side effects. (He feels it isn’t helping anyhow and will stay in a patient’s body for up to 5 months after last dose.  Next scans early December, barring any emerging symptoms. We have another 12 weeks to live our life.

9/2018 Gross hematuria-MRI shows remaining kidney with 5+ cm met and several more in upper pole. STOP Nivo immunotherapy

11/2018 PROGRESSION—Scans show new mets on his liver, lungs, soft tissues, lymph nodes, starting to block remaining ureter and 15 new metastatic spots throughout his brain 

12/2018 START Everolimus + Levantinib =progressively poorer quality of life. Side effects: mouth & tongue sores, fatigue, diarrhea, vomiting, weight loss=10 lbs in 4 weeks

1/2019 PROGRESSION-CT shows multiple new bony mets in  spine, pelvis, femur and liver growth of other metastasis . Head MRI shows growth of the 15 new mets seen 6 weeks ago. BUT, all sites that were previously radiated are STABLE

1/10/2019 Palliative Care-in retrospect should have consulted them sooner

1/2019  Steriod + start Cabozantinib

3/2019 scan show PROGRESSION in some sites and STABILITY in others 

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

To interact with Mark’s website, sign in or register today.

By registering with CaringBridge, you will join over 300,000 people a day who are supporting friends and family members.

Sign In Or Register