Introduction

Late February of 2012 Mark was diagnosed with stage 4 Metastatic Melanoma Cancer. This is written for our family and friends who have so caringly expressed a desire to know of the current situation. We so appreciate the love and support that has been shown to us and we lovingly empathize with and pray for many of you that have had or are currently going through trials of your own. In love, hope and faith, Mark and Ane

Sunday, May 30, 2021

Needle Biopsy to SABR

Last Monday, May 24, Mark had a needle biopsy of his liver. Since Mark's pain had increased from tumor growth, we picked up a prescription for Oxycodone. The recommended dose from the doctor was 1-2 tablets every 4 hours, as needed for pain. The pharmacist encouraged us not to use the recommended dose, as that was a maximum amount. Initially, Mark took just one tablet and felt like he was floating on a cloud with absolutely no pain, which was heavenly. But that didn't last long, and soon he was taking 2 tablets every four hours. By the middle of that night, he was in incredible pain, with hours to go before he could take more. By morning, he was feeling desperate, so we called the doctor, who had Mark take three pills in addition to his usual dose. Finally, he slept and was out for most of the day, but at least he wasn't in pain. He has returned to the prescribed dose, and although the pain never goes entirely away, it is manageable. He can only sleep on his left side as the tumor in the liver is on his right side, and the tumor next to the pancreas causes back pain. That's right, the cancer is not in his pancreas but in a lymph node close to the pancreas. Nausea and dizziness come and go, and itching has become incessant (a side effect of Oxycodone.) He has prescription creams that help a little. His digestive system is now affected, so he can't eat much and is losing weight rapidly. Sometimes he feels quite chipper, and we're always thankful for those moments. Distractions seem to keep his mind off of the discomfort. 

Thursday, we met with Dr. Crittenden, the radiologist. She explained why Mark is in such pain. Tumors in the liver are typically not painful. My mother died of liver cancer but was rarely in pain. I had wondered why it was so different for Mark. The nerve endings that transmit pain are in the lining of the liver. Mark's tumor is close to the outside edge of his liver, stretching the lining, causing intense pain. Also, he may have had some bleeding from the biopsy that irritated the lining, causing more pain. 

The radiologist would like to use a newer type of radiation therapy on Mark, although it will take about three weeks to start. Can he wait that long with the increase in pain? If not, he can have the traditional radiation, but we're hoping that's not the case. Here's a brief summary of the new therapy:

"Stereotactic ablative radiotherapy (SABR) is a highly focused radiation treatment that gives an intense dose of radiation concentrated on a tumor, while limiting the dose to the surrounding healthy tissue. Like other forms of radiation, SABR works by damaging the DNA of the targeted cells. Then, the affected cells can't reproduce, which causes tumors to shrink. SABR uses the latest image guidance technologies to ablate tumors with millimeter-scale accuracy."

Dr. Crittenden indicated that this therapy has been highly effective in shrinking and eliminating tumors where there are only a few. The combination of Keytruda and SABR has an even better chance for positive outcomes. We didn't know anything about SABR, so we are amazed and grateful for other available options.

Mapping using CT and MRI scans will be done Thursday, the 3rd. It takes about 2 weeks afterward for the actual radiation to be administered. There will be a total of five or six sessions which will be scheduled at our next appointment.

Mark will have his second Keytuda infusion a week from this Wednesday, and that could potentially shrink these two tumors relieving some of the pain. 

For the first time in many years, we have wondered if this could be the beginning of the end for Mark. When Mark was in such intense pain, I knew that I would be willing to let him go rather than have him suffer so. 

We both have relied on the impressions we had earlier. In early December, before we knew of the return of the cancerous tumors, Mark was pondering how to increase his faith. An impression came that he should not fear. "What should I not fear?" he asked. In his mind, he went through a couple things he could have fears about and was told they were not it. But when he asked if he should not fear cancer, the answer was clear. "So, I need to fear less about the cancer?" he asked. "Yes." That seemed odd because, at the time, there was no need to be concerned. Now, we have definite concerns but know we should not fear. Still, what does that mean? What does the future hold? We don't know. 

I recently came across a journal entry I wrote on January 2 after learning about the tumors and decided to use Interleukin-2. 

Last night I awoke several times with a question on my mind. It seemed to be put there. It was simply, “What do I need to know?” After asking this several times, thoughts came in answer. They were something like this, “There will be some difficult times ahead. You may doubt that Mark will survive, but you must not fear. You will not be given more than you can endure, and you will be given strength beyond your own to be a blessing to you and to Mark when he needs you. You have been given knowledge that will sustain you. Continue to seek for increased knowledge and guidance. Your testimony will be a light for others, particularly in your family, to look to in their times of need.”

We both have had feelings that this is not the end but another opportunity to learn, develop empathy, and increase our faith. Of course, our faith is not dependant on whether he lives or dies. Our faith is rooted in our Savior, Jesus Christ. He knows us. He loves us. He will guide us in whatever we have to endure. These things are easier said than done, especially during pain and suffering. It is real, and it is hard, but we know that we can turn to the Lord, and he will sustain us. We also appreciate the kindness and support that we continually receive. Thank you! 



Friday, May 21, 2021

Creating Hope

Mark had his T-cells harvested today at Providence Portland Cancer Center. I doesn't help him feel better now but gives us hope for the future.


Currently, Mark is in pain all of the time and has nausea most of the time. Medications take the edge off of the pain, although the more potent pain meds seem to bring on more nausea, so he struggles to know what to take. His first Keytruda immunotherapy infusion for this round was last Monday, but it takes time to shrink the tumors. The last time he used Keytruda, he noticed a reduction in the size of the visible tumors under the skin after the 2nd infusion. Radiation can also shrink the tumors, but he doesn't meet with Dr. Crittenden until May 27. That is less than a week away, but it seems like an eternity when he is in constant pain.

Last night we watched the annual Creating Hope event. (We spoke at this event in 2014.) We've included links to video clips from the virtual 2021 event. The first is a Lab Tour with Dr. Walter Urba. He has done so much for the advancement of immunotherapy in cancer treatments, especially for melanoma patients. Without these advancements in immunotherapy, Mark would not be here today! He is now participating in the T-cell research project referred to in this video.

Dr. Walter J. Urba, M.D., Ph.D., has been the cancer program director for 28 years. He and his research team have proven the immune system can fight cancer. Immunotherapy works and is saving more lives than ever before.

The second cip starts with our current oncologist, Dr. Matthew Taylor who is also an incredible doctor and researcher.

One of the purposes of this event is to raise money to keep research going and purchase much-needed equipment. 70% of research funding comes from doners. We appreciate any donation you could make.

We are so grateful for the time, effort, passion, and expertise of the doctors and researchers at Providence Portland Cancer Center.



Creating Hope 2021

Sunday, May 16, 2021

Scheduling Updates

Since Mark isn't having any more Interleukin-2, he can have the Covid-19 vaccination. He had the first one last Thursday and will have the 2nd on June 3rd. Yea!!

Finally, all of the imminent procedures have been scheduled: 

  • Monday, May 17th - 1st Keytruda Infusion 
  • Friday, May 21st - T-cell Harvesting 
  • Monday, May 24th - Needle Biopsy of the tumor in the liver
  • Thursday, May 27 - Appointment with a radiologist to discuss radiation therapy
  • Wednesday, June 9th - MRI of the brain and 2nd Keytruda Infusion
  • Wednesday, June 30th - 3rd Keytruda Infusion and every 21 days from here on -- as long as it keeps the tumors from growing. 
Mark is eager to get going. The tumors are growing, and his pain has continued to increase to the point that over-the-counter meds do very little. Stronger meds have been prescribed--he just doesn't like how they make him feel, but when the pain gets bad enough, he is grateful to have them. Mark keeps doing all he possibly can and does his best to act like he is fine. Sometimes it's hard to hear that he looks so good because he doesn't feel very good. Of course, some days are better than others. 

While many share healing stories from alternative therapies, none have felt suitable for us at this point in time. Early on, we focused on foods, juicing, essential oils, and several other regiments, but none of them seemed to make a major difference in reducing the tumors. The targeted and immunotherapy treatments were excellent and worked incredibly fast. The last few have not been as successful, but we realize that cancer typically gets more aggressive in finding ways around any therapy. We're not giving up hope, and we will shoulder on. Do we sometimes get tired of it all?  Yep, it is emotionally exhausting, and for Mark, it is also physically draining. We are in good spirits most of the time, but please forgive us if you catch us on a not-so-good day. I've pondered why we are sometimes so sad and discouraged when we've been told that we don't need to fear. I believe that we need to feel all these emotions deeply. Otherwise, we couldn't have sincere empathy for others. 

We are well aware that many are going through tremendous challenges, and we want to serve and support them however we can. We don't want to draw attention to ourselves and only write this for those who want to know what is happening. It is humbling to know that many are praying for us and have been for years--no doubt, that's part of the reason Mark is still here, and we are so grateful! We don't know what the future holds, but we are trying to increase our faith and trust that we are in good hands. Thanks again for your loving support.

Friday, May 7, 2021

Good News/Bad News

The good news is that Mark will not have to endure any more of the Interleukin-2 treatments. They were definitely not a cakewalk! 

The bad news is that now there are two active tumors--one in the liver and another in the pancreas. 

We knew something wasn’t right about a week ago when Mark slept for 15 hours and was still fatigued. The pain in his abdomen seemed to be increasing, as well. On Tuesday, Mark called Dr. Taylor, who wanted the PET scan as soon as possible. The scan was yesterday, and this morning we had a virtual appointment with Dr. Taylor. He showed us the scan. The tumor in the pancreas is relatively small, but the one in the liver has grown. No other tumors were evident in the scan, although an MRI will be scheduled to check his brain. 

Dr. Taylor met with Dr. Urba today to discuss the next best treatment options. There is another possible treatment that could have durable results, but it’s a long shot. The first step is to harvest T-cells from Mark’s body. It’s about a 4-hour process of having his blood flow through a machine that will pull out the T-cells and return the rest of the blood to his body. (It’s kind of like giving platelets.) These T-cells will be carefully studied a few at a time in Petri dishes to identify any T-cells that recognize cancer cells. It’s a long, laborious process, but if a T-cell is found that identifies the enemy, it can be reproduced in mass and returned to his body. Mark likes to call this treatment “The Clone Wars.”  The cloned T-cells are sent to battle to destroy the cancerous cells. Unfortunately, finding the correct type of T-cell is like finding a needle in a haystack, but it has great potential to fight cancer if one is found. This is a lengthy process, so something else must be done as soon as possible.

Radiation will be used to shrink the tumors quickly. Along with that, Mark will go back on Ketruda. This immunotherapy treatment worked well before, but it was not durable. Tumors grew after he went off of it. It may be effective again in shrinking or even eliminating the tumors, but we don’t know how long it will be effective. This time he will stay on it as long as it is working. 

There are always clinical trials in process. Fortunately, those done at Providence Portland Cancer Center do NOT use placebos. Dr. Taylor will begin researching any that could potentially be used in Mark’s situation.

Dr. Urba once said that while we may not have a cure, we can keep kicking the can down the road as long as possible. That’s what we’ve done for 9 1/2 years, so we will keep on kicking the can (hopefully not the bucket!!)

While we may make jokes, this has been harder on us than we had expected. Your continued faith, prayers, love, and support are so appreciated.