Time Line

Timeline of Events

2012 

Feb 17 – X-ray followed by CT Scan – Learned of 3 dots in the lungs

Feb 18 – Our family doctor said it was most likely Metastatic Melanoma

Feb 21 – Learned of tumor in the liver from nurse scheduling the biopsy

Feb 24 – Biopsy of the liver – Learned the tumor was the size of a lime

Feb 27 – PET scan

Feb 28 – Mark to the emergency room because of 'glob' seen in the heart. Learned results of the PET scan: "...avid metastatic disease in the lungs, the right ventricle of the heart, liver, omentum, paraspinal muscles, and soft tissues of the right hip and both thighs."

Mar 1 – Echocardiogram & Appointment with Dr. Urba. He told us that there was a new drug on the market that had the potential to shrink the tumors and increase life expectancy on an average of 4-6 months but could be longer. Mark had to have a BRAF mutation for the drug to work, so lab work was sent in. About half of patients with metastatic melanoma have this mutation. He also told us that Mark could have six months to a year without the medication, although much later, he confessed that he really didn't think he could live longer than about 3 months without the meds. At the time, he didn't want to discourage us because he hoped the drug would work, so he was giving us more of a time frame if Mark had a positive response to the drug. 

Mar 9 -- Brain and heart MRI. The brain is tumor-free! 

Mar 15 – We went to Ecuador to tell Rachel about the cancer. We had to keep it all very quiet for a month as we didn't want her to find out until we could be with her. However, before we boarded the plane, we found out Mark has the BRAF mutation, which allowed him to use the new drug, Zelboraf (vemurafenib). About half of those who take this drug have a positive response.

Mar 16 – Told Rachel about the cancer

Mar 24 – Mark started taking Zelboraf.

Apr 1^st -- One week of Zelboraf, and the cough was gone!

Apr 14 -- The EKG showed that the tumor in his heart had shrunk to 35% of its original size. 

Apr 21-May 1 -- Precoa trip to Maui. 

Apr 24 -- Heart went into A-Fib and spent the night in the Maui Memorial Medical Center. 

May 2 – Found out that Mark had Pericarditis.

May 4-20 – Trip to Israel  (Plane ride there was miserable for Mark.)

May 7 – The worst day yet – Mark was very sick and couldn't even take the meds that he had to have. Dr. Farley changed the pill regiment. The next day was SO much better! The rest of the trip was good even though he was often tired and couldn't do much walking. 

May 21 – X-Ray showed that masses in the lungs have nearly resolved. Heart still irregular, but not as fast – 100 BPM

Aug 2 – Echocardiogram

Aug 6 – Results show the large tumor in the heart is GONE! Dr. Urba reduced the dosage of Zelboraf by 25 % to help with adverse side effects.

Aug 29 – Appointment with Dr. Zemsky, an electro-physiologist, informed us that Mark's heart is in A-Flutter, not A-Fib. A Catheter Ablation may be able to cure the problem.

Sep 9 – Both PET and MRI indicate no cancerous tumors are evident!

Sep 14 – Catheter Ablation was successful -  normal heartbeat!

Oct 24 – Off all heart medications

Dec 29 - Rachel married Tighe Racicot. She got to dance with her father! (a dream come true)

2013 

Jan 22 – Stopped the Zelboraf 

Jan 25 – PET scan

Jan 30 – Results of PET showed no tumors.

Mar 4 – Appointment with Dr. Urba – Discussed what to do next. He made it clear that we are treading new ground. Zelboraf typically shrinks tumors - doesn't get rid of them. 

Mar 15 – Chest X-ray showed no tumor growth. Side effects of Zelboraf subsiding.

May 6 - Met with Dr. Urba - Made the decision to wait to start any new treatments.

Jul 1 -  Another clean chest x-ray! Off Zelboraf for 5 months. No indication of any tumor activity. Mark feels GREAT!!! His hair is coming back in wavy and thicker. Also, he is gaining weight and looking much younger than he did 6 months ago. Dr. Urba used the word remission for the 1st time. We made the decision to do nothing medically unless something changes. Life feels back to normal!

Jul 6 -- Celebrated our 35th wedding anniversary. (last year wondered if he'd make it this long)

Jul 13 -- Mark told his story at the American Cancer Society Relay for Life held at the Lake Oswego High School football field.

Aug 3-12 -- Our trip to Ireland

Oct 2 -- Met with Dr. Urba. With Mark feeling so good, there is no reason to start any new treatments. Dr. Urba expects it to come back, but when he can't even guess. Mark is an anomaly. We will meet again in 3-4 months unless Mark notices any changes.

 2014

 

Jan 6 – Appointment with Dr. Urba.  Mark seems healthy, but we requested a chest x-ray to be sure and got it on the way home. Later in the day, we got an e-mail from Dr. Urba, "FYI-Test Good"! It has been almost a full year of no Zelboraf, and there are no recurring tumors!! 

Mar 28 - PET scan (because of discomfort in his abdomen that has gradually gotten worse)
Mar 31 - Met with Dr. Urba.  Found out results of PET. One large tumor in the left adrenal gland and seven small ones in soft tissue throughout the body.

Apr 9 - Started new meds - BRAF and MEC inhibitors combined. Recent studies have shown a more positive response with a longer duration when used together. Hopeful!

May 14 - We spoke at the Creating Hope for Cancer Patients sponsored by the Providence Cancer Research Center.

July 6 - Results of an Ultrasound done on July 3rd: FINDINGS: No obvious mass is present in the left upper quadrant. The adrenal gland or mass is not seen. IMPRESSION: Neither the adrenal gland nor mass is identified on ultrasound in the left upper quadrant. Suggestive that the mass is smaller, but repeat CT or PET/CT scan would much better evaluate.

Aug 8 - PET Scan  
Aug 17 - Results: "FDG-avid left adrenal mass, and subcutaneous nodule in the right hip
region are essentially resolved. Other areas of increased FDG uptake
are also resolved. In comparison to the prior studies, this PET/CT study shows improvement
of disease, with no new FDG-avid lesions, and resolution of numerous old
FDG-avid lesions."

Aug 28 - Dr. Urba confirmed what we understood from the PET report - all of the tumors are gone!!! His recommendation is for Mark to stay on the meds for 3 more months and text again.

Dec 8 - PET results are clear again! Going off all medications.

2015

Jan 30 - Heart started racing.

Feb 11 - Met with Dr. Zemsky and determined it was atrial fibrillation. Went on heart medications.

Feb 24 - Heart went back to a normal rhythm.

Apr 24 - PET scan is done due to pain in the abdomen.

Apr 25 - Dr. Urba called with results:  Two small tumors - one in the soft tissue of his thigh and the other on his left adrenal in his abdomen. Started the same medications again, Tafinlar and Mekinist. 

June 30 - PET scan showed NO TUMORS!

Nov 17 - All continues to be well. Staying on medications with only minor side effects.

2016

Aug 19 - PET scan is done due to pain in the abdomen.

Aug 22 - Results show one large tumor in the adrenal gland. This is the first time there has been tumor activity while on the medications, indicating that the cancer is finding a way around the meds.  

Sep 16 - Tumor in left adrenal gland removed surgically by Dr. Diego Muilenburg.

Dec 7 - PET scan. Dr. Urba called with the news that there are numerous tumors.

Dec 9 - Met with Dr. Urba and saw the scans with around 20 tumors from the face to the shins, some in soft tissue and others in bone. None in critical organs.

Dec 14 - MRI indicated no tumor activity in the brain. Dr. Diego removed one of the tumors on the chest for biopsy to help determine the subsequent treatment. 

Dec 28 - Happy 65th Birthday! Pain medications such as Oxycodone help relieve the hip and abdomen pain caused by tumors pressing on nerves in bones in the hip and spine. Biopsy showed high levels of PD-L1, which means Ketruda has a better chance of delivering positive results.

Dec 29- Met with the radiologist to do mapping for radiation to relieve pain in the hip and spine.

Dec 30 - First treatment of radiation causing initial increased pain and nausea.

2017

Jan 6  - 2nd treatment of radiation and 1st infusion using Ketruda and the clinical trial drug Galectin which in the lab has indicated a boost in positive results used along with Ketruda.

Jan 28 - 2nd infusion of Ketruda and Galectin. Pain is not as acute.

Feb 6 - Noticeable decrease in size of surface tumors! 

Feb 17 - 3rd Infusion.  

Mar 14 - 4th Infusion and feeling fine!

Mar 31 - CT Scan

Apr 3 - 5th Infusion and last with Galectin.   Results of CT:  All tumors in soft tissue are basically gone. There is a mass in the area where the tumor in the adrenal gland was removed. It is about the same size as in the last scan, so while it hasn't shrunk, it hasn't grown. Lesions in the bone are harder to tell with a CT, but they obviously have shrunk since the pain has continued to decrease. Only a PET scan can indicate if there are still live cancer cells in the bones. 

Side effects are minimal - just some skin rashes on his face and ears. Increased energy levels indicate that fatigue is related more to tumor activity than as a side effect of the Ketruda.  AMAZING!!!  

Apr 28 - 6th Infusion, this time using only Ketruda. 

Jul 7 – PET scan showed NO active tumor activity!! (Infusions continued every 3 weeks)

Dec 22 – Another PET showed the same – No evidence of cancer!

Dec 26 – 17^th and LAST infusion of Ketruda.

2018

Feb 12 – Appointment with Dr. Urba. No CT is needed. All looks great!

Jul 9 – Met with Dr. Urba. He doesn't think a CT or MRI is needed. No concerns.

Dec 1-15 – Mild pain in the lower abdomen – left side

Dec 17 – MRI/CT shows NO cancer activity!

Dec 30 – Pain has subsided. Perhaps a muscle, maybe anxiety over the upcoming scan. Either way, we are delighted!

2019

Jan-Feb -- Pain in the abdomen continued to come and go. While it has not been severe, it does seem to be more constant.

Mar 5 -- Ultrasound showed no evidence of a hernia. 

Mar 15 -- Upper GI showed no evidence of an ulcer.

Mar 18 -- CT Scan followed by appointment with Dr. Urba.  Results indicated multiple tumors in the liver, some an inch in diameter. In addition, another tumor found on the pancreas is likely causing the pain. 

Mar 21 -- Pain no longer controlled with OTC pain killers. Vicodin helped significantly. Because of the intense pain, Dr. Urba thought it best to start the targeted medications, Tafinlar and Mekinist, to shrink the tumors as soon as possible.  

Mar 23 -- Drugs were delivered, and Mark took his first dose of Tafinlar
Mar 24 -- Tafinlar & Mekinist were taken (Mekinist is only once a day). Already, Mark is having some relief and discontinued the Vicodin.
Mar 26 -- The pain is mild, so no pain medications are needed.  

April - August -- Life is GOOD!!!

Sep 18 -- PET Scan
Sep 30 -- Met with Dr. Urba, who showed us the scan results indicating that all tumors had resolved. Of course, there are likely cancerous cells present as these drugs (Tafinlar & Mekinist)  do not eradicate cancer, but they are great at reducing the size and prolonging life. 
Also, this was the first combined immunotherapy infusion:  Nivolumab (Opdivo) and  Ipilimumab (Yervoy).

Oct 21 -- 2nd infusion of Opdivo & Yervoy

Oct 28 -- An MRI showed that Mark has an Enlarged Pituitary Gland, which caused headache, nausea, and dizziness and has resulted in a hormone imbalance.
Oct 30 -- Prednisone has already helped profusely.  

Nov 2 -- To the Emergency Room with elevated heart rate -- a side effect of the Prednisone.
Nov 10 -- Heart rate went back to a normal rhythm, so the cardio-version will not be needed.

Nov 13 -- Met with an endocrinologist who indicated that off-balance thyroid and testosterone hormones should go back to normal, although he could have permanent Adrenal Insufficiency. The combined immunotherapy can permanently zap the signal from the Pituitary Gland for the adrenal gland to produce cortisol.  
Nov 18-20 -- Severe dizziness, nausea, and diarrhea. 
Nov 20 -- Infusion of fluids for dehydration, meds for nausea, and steroids. Did not help much, so we stayed overnight in the hospital for observation.
Nov 21 -- Returned home initially feeling better, but not for long.  
Nov 22 -- Back to the Cancer Clinic for more intravenous fluids and meds.
Nov 23-24 -- A rough weekend.
Nov 25 - 29 -- After a visit to the clinic on the 25th, Mark was admitted to the hospital. It was determined that this was not just coming off of the Prednisone too fast, but also his immune system was attacking his digestive system along with the Pituitary Gland. He is in the top 3-5% for the most severe reaction to the double immunotherapy. He will not be able to use Yervoy again. 

Dec 4 --  A blood draw analysis showed an elevation in liver enzymes. The immunotherapy caused inflammation in the liver, as well.
Dec 9 -- Met with Dr. Urba, who will monitor the gradual transition off of Prednisone. He started at 100 mg/day, which is exceptionally high. The plan is to go down 5 mg/day every 3-5 days. Mark is feeling much better!  

2020

Jan 3 -- Met with an endocrinologist. The nurse taught us how to inject cortisol in case of an emergency.
Jan 8 -- Another infusion of Infliximab was needed for the digestive tract as Mark had increased nausea and diarrhea after going below 50 mg. of Prednisone. Our 18th grandchild was born, Mark Daniel Hornibrook.
Jan 10 --  The Infliximab worked, and he started the gradual taper again. Unfortunately, Prednisone has caused extreme fatigue, which has slowed Mark down considerably. Belly fat and moon face have also been side effects.  
Jan 27 -- A CT Scan revealed no active tumors, but Mark has had some pain in the same area as the last tumor in his abdomen. Dr. Urba doesn't think it is a tumor.

Feb 12 -- The pain has persisted, so a PET scan was done, which exposed a tumor in the left adrenal gland and a small one in the liver. Mark knows his body well! 

Feb. 20 -- We met with Dr. David Taylor, who will be taking over for Dr. Urba, who will be relinquishing all patient care. Dr. Taylor seems like a younger Dr. Urba, and we feel confident in his abilities and comfortable being in his care. 

Feb. 21 -- Mark started taking Mekinist and Tafinlar on the 20th. Within a few hours, the pain was much less intense. Today it was gone! The doctors don't believe that is possible, but it's true! 

Feb 24 -- An infusion of Infliximab was necessary to stop his body from attacking his digestive tract. Mark's body is producing thyroid hormones again, so he went off Levoxyl.

Mar 5 -- We went to an appointment with the heart doctor with hopes of getting off of all three heart medications. Unfortunately, that didn't happen, but the dose of Flecainide was reduced. 

April 29 -- After some blood in Mark's urine, he saw a urologist. A Cystoscopy was done while he was there. A tiny camera was inserted into the bladder that showed no cancer growth. However, the blood thinners could be causing the bleeding.

Mark reduced the amount throughout the month and then got off Prednisone completely. It was replaced with hydrocortisone which mimics the body's production of cortisol. We can't live without cortisol, so Mark will always be on this medication. 

There seem to be side effects of each medication. There is currently some neuropathy in the toes, swelling of the ankles and feet, surface thrombosis, muscle aches and pains, joint stiffness, cracks in the palms of my hands, general fatigue and weakness, lack of stamina, and now kinky hair! Still, those are a small cost for life!!

May 18 -- PET Scan reveals NO active tumors.

May 20 -- Dr. Taylor showed Mark the scans. There is a mass in the adrenal gland area, but it is smaller than before and is not active. Mark will continue with the same medications, Tafinlar and Mekinist. Mark is learning how to monitor how much hydrocortisone his body needs daily. 

Aug 17 -- PET Scan again reveals NO active tumors. Adrenal Insufficiency continues to be monitored with hydrocortisone. 

Dec 14 -- PET Scan

Dec 16 -- We learned the results -- there is a golf-sized tumor in Mark's liver. Dr. Taylor discussed with us possible treatments, and now the best option is to use Interleukin 2. Unfortunately, side effects are harsh, and the % chance of remission is small, but there is some hope. 

Dec 31 -- Mark went off the cancer medications to be ready for a stress test in a week. These meds can cause heart irregularities which he has definitely had.

2021

Jan 7 -- A lung and heart stress test was done to see if Mark's body was strong enough to handle the next treatment protocol. He passed both with flying colors.

Jan 18-23 --Admitted to Providence Portland Hospital in the cancer wing for Mark's first infusion of Interleukin-2. Throughout the week, 5 doses of Interleukin-2 were given.

Feb 8-12 --Round 2 of Interleukin 2. This week he was able to handle only 4 doses.

Mar 11 -- CT Scan showed a definite improvement. The tumor was about the same size as in January. Previously, it had been growing rapidly.

Mar 15-19 -- Round 3 of Interleukin 2. Three doses were administered. 

Apr 5-8 -- Round 4 of Interleukin 2. Mark could only handle 2 doses.

May 6 -- PET Scan reveals two tumors -- one in the liver and a small one near the pancreas. This means there will be no more Interleukin-2. It did not work. 

May 17 -- 1st Keytruda Infusion

May 21 -- T-cell Harvesting

May 24 -- Needle Biopsy of the tumor in the liver

May 27 -- Met with the radiologist to discuss radiation therapy.

Jun  2 -- To ER with pain. Admitted to Provident Portland Main

Jun  3 -- Stent Placement in Bile Duct

Jun  4 -- MRI & CT mapping of the pancreas. Discharged. Back to ER in the evening.

Jun  5 -- Admitted to the hospital with Pancreatitis. 

Jun  7 -- Discharged

Jun  9 -- MRI of the brain and 2nd Keytruda infusion

Jun 10 -- Liver mapping done with contrast, but it didn't turn out.

Jun 11 -- Liver mapping redone, without contrast.

Jun 18 -- 1st SABR Radiation of Pancreas

Jue 21 -- 2nd SABR Radiation of Pancreas

Jun 22 -- 3rd SABR Radiation of Pancreas

Jun 25 -- 4th SABR Radiation of Pancreas. Evidence of shrinkage.

Jun 29 -- 3rd Keytruda Infusion & 1st SABR Radiation of the Liver

Jun 30 -- 5th SABR Radiation of Pancreas

Jul  2 -- 2nd SABR Radiation of Liver

Jul  6 -- 3rd SABR Radiation of Liver

Jul  7 -- 4th SABR Radiation of Liver

Jul 12 -- 5th SABR Radiation of Liver

Jul 29 -- Stent Replacement

Aug 11 -- 4th Keytruda Infusion

Aug 16 — PET scan reveals radiated tumors gone, but more growing: one in hip, cluster at the base of the spine, and multiple in the liver.

Aug 19 —Discussed possible treatments: Clinical trial, 3rd generation targeted therapy, TIL Therapy. 

Sep  1 -- Labs and CT for Clinical Trial. On track for ALPN-202 trial. Found Needle in the Haystack--meaning T-cells from the harvest were found that can fight cancerous cells. 

Sep  3 - MRI & Blood Draw. No liver biopsy, as scheduled. Bilirubin count high. Bile duct blockage Rescheduled stent replacement for September 10th. 

Sep 10–Stent replacement to stop blockage in the bile duct. Two stents were placed.

Sep 13 -- Spent the day at Legacy Meridian Mark ER

Sep 14 -- Learned that s cluster of tumors in the liver is causing the blockage. Bilirubin count is going up. We have Tafinlar on hand, so Dr. Taylor encouraged Mark to take it.

Sep 15 -- Got word that the new generation targeted therapy has been approved.

Sep 17 -- Mark was able to get up long enough for our family photo! 

Sep 21 - Managing pain has been a struggle for the past week. 

Sep 22 -- Mark started the new targeted therapy, Braftovi and Mektovi

Sep 23 -- He had his last dose of pain medication. These meds shrink tumors like nothing else. 

Sep 26 -- He was even more exhausted and weak but thought it was side effects of new meds.

Sep 27 -- Mark was doing better, so Ane took a break, and Julie, Mark's sister, cared for him.

Sep 28 -- Tyler arrived just in time. Mark had passed out in the bathroom. Julie helped him down, so he wasn't hurt. He came to when Tyler got him up but went out again and would not respond. His breathing got very shallow, his eyes were glazed, and he lost bowel control. Julie had called 911. When medics arrived, his blood pressure was 60/40. He was rushed to Providence St. Vincent, the only hospital accepting ambulance patients. Mark was very close to death. I was able to be with him in the ER, but not when he was taken to ICU. He had septic shock from infection.

Oct.1 -- Hepatobiliary scan showed no obstruction in the biliary duct. Cholangitis inflammation caused the blockage. Mark also has Acalculous Cholecystitis (diseased gallbladder). He stabilized and was moved out of ICU to a regular hospital room. 

Oct 5 -- Mark was discharged.

Oct 7 -- FDA approval was given for Mark to receive the T-Cell therapy with his cloned cancer-fighting cells.

Oct 10 -- Mark was released from the Lake Oswego Stake Presidency after serving for over 12 years.

Oct 14 -- Mark passed out for just a bit but was weak and pale. I called 911. Medics took Mark to Providence Portland where he was admitted.

Oct 15 -- Tests indicated C-diff (Clostridium Difficile) caused by the antibiotics destroying the good bacteria. 

Oct 18 -- Chemo was supposed to start today, but he is not well enough, so it will be delayed.

Oct 19 - Fever and chills started again.

Oct 20 -- Sepsis again!

Oct 21 -- Itchy and uncomfortable rash spread all over his body. Likely from the antibiotic to fight sepsis. That one was stopped, and another was started. 

Oct 23 -- Chemo was started today!

Oct 24 -- 2nd Dose of Chemo

Oct 27 -- T-CELL INFUSION!!! Plus, one dose of IL-2. Rigors were awful!

Oct 28 -- 2nd dose of IL-2 Rigors were no fun, but not quite as bad.

Oct 29 -- Last dose of IL-2, and much better than before on all accounts.

Nov 3 -- Another infection

Nov 4 -- Another ERCP to replace the clogged stent

Nov 7 -- When his hair started falling out in clumps, the CNA shaved his head.

Nov 9 -- Home after 26 days in the hospital.

Nov 12 -- Another infection. Another trip to the ER

Nov 16 -- Home again. CT scan results show shrinking tumors! 

Nov 19 -- Back to the hospital with an infection.

Nov 24 -- Home for Thanksgiving, and we are giving thanks!

Dec 1 -- Admitted once again.

Dec 6 -- Mark's 80th day in the hospital in 2021. Discharged.

Dec.15 -- Antibiotics are working.

Dec 25 -- Happy to be home for the holidays.

Dec 28 -- Happy 70th Birthday, dear Mark.

2022

Jan 1 -- Happy New Year's Day and back to the hospital with an infection. C-Diff once again.

Jan 4 -- Discharged

Jan 10 -- 911 call. Ambulance to Milwaukie Hospital because there were no beds available at Providence Portland or St. Vincent.

Jan 13 -- C-Diff and Sepsis. 

Jan 15 -- ERCP was done to replace stents. While the procedure was successful, the surgeon explained that Mark's liver did not look good. 

Jan 18 -- Discharged

Jan 21 -- We signed papers to start Hospice.

Jan 22 -- Equipment was delivered: a hospital bed, walker, and transport chair. Medications were sent to help with nausea, pain, and anxiety.

Jan 23 -- Mark is weak, naps often, has edema, and can't find anything that tastes good. Medications help with nausea and anxiety. CT scan still shows no tumor growth, and his mind is clear. However, while the therapies worked to stop cancer growth, Mark's liver is failing.

Feb 9 -- At 3:00 am, Mark took his last breath, and his spirit left his mortal body. It was a peaceful transition, but oh, how difficult it was for his wife and family. He lived a remarkable life and has left a legacy of love, faith, and craftsmanship. His journey with cancer was 10 years, which is incredible considering his diagnosis in February 2012 was so severe that he should have only lived 3 months. While the challenges have been difficult, there have been so many miracles, and our lives have been filled with joy.