Day One of Interleukin-2

 At 7 am we checked in at Providence Portland hospital, got our room, and meet with the team: Two doctors, two nurse practitioners who work directly with the Interleukin protocol, and the two nurses on duty. They again reviewed the agenda and what to expect. We were feeling great! It's so strange to go to the hospital feeling well, knowing that what's coming isn't going to feel good! That's just backward.

Mark got a CT scan, so there is a baseline to compare the tumor's size before and after a round of treatments. The PET scan was a month ago, and we know the tumor has grown because he can feel it now. From there, he was taken to have the intravenous catheter placed in his neck. An 8-inch tube was inserted into his chest, with three lines on the outside for fluids, Interleukin, other medications, blood transfusions, if needed, etc. 

When he returned to the room, we opened a box that had been prepared by our children and grandchildren. A collection of notes, pictures, drawings, etc., were sorted behind tabs to have some for each day we are here. A banner was made for us to drape on our wall. Each day we can add the items for that day. SO FUN! In one envelope, there were 29 hearts -- one for each of our children, their spouses, and our 18 grandchildren, plus the one on the way with a note that said, "Our hearts are with you!" A set of colorful ducks spelled out "We Love You." There were cards included to write notes to the doctors and nurses, a Daily Joy quote book, and many creative fun things to enjoy! It made us laugh and cry - so tender and sweet! What a wonderful family we have!!! 

At 3:00 pm, the first infusion was given. Around 4:30, chills started, followed by back pain, and finally nausea. The nurses piled on warm blankets and gave him Demerol for the pain and meds for nausea. It all helped, although he still hasn't been able to eat anything. Dr. Taylor stopped by and said that those were all normal, and he expects his heart rate to increase and his blood pressure to drop tonight. So far, it is manageable, and they do everything they can to keep him feeling as good as possible. Side effects will ramp up as doses increase, so we may be in for a crazy ride! 

The next dose is scheduled for 11 pm and another at 7 am unless he needs to take a break because of side-effects. That will be the schedule through Friday. We won't post every day but will try to post updates, especially if there are significant changes. 

We love all the love and support.  Today we thought of what a friend, Terry Clark, said after a heart attack. It was something like, "If I'd know all the love and support I'd get, I would have done this a long time ago!"  Not sure we want to go through all this, but it certainly is sweet to feel the love and support of so many!!! Thank-you!

What to Expect

Yesterday was an eventful day!

At 1:00 am, we learned that the tree in our front driveway had fallen onto our house during the storm. The wind gusts had also caused some heavy limbs to fall onto the play structure in our backyard, smashing it up on one side. In the morning, we began making calls to the insurance adjuster and to a tree removal service. Fortunately, by the end of the day, the tree was removed, and we learned there was minimal damage to the house. Whew!

During all of this, we had a phone meeting with Ian, the nurse practitioner who will be administering the Interleukin 2 protocol. Ian explained the process in detail:

• Arrive and check-in on Monday, the 18^th, at 7-7:30 am
• Meet with the team who will be involved in Mark’s care, including the oncologist.
• During the morning, a temporary intravenous tube (central venous catheter) will be inserted into a large vein in the neck, placed by a doctor in diagnostic imaging. The catheter will remain in place for the duration of the hospital stay. IL-2, fluids, blood transfusions, antibiotics, and other medicines can be given through this catheter. (Ian explained that the medicine is too caustic for the arm's blood vessels; thus, a larger vessel in the neck is used.)
• The first IL-2 treatment is usually at 3:00 pm on the day of admission.
• The infusion will last for 20-30 minutes and will be given every 8 hours for up to 14 total doses. An alarm will sound when the infusion is about to start to alert the staff.
•  It is common to withhold some doses of IL-2 because of side effects. Although 14 doses are planned, the average number received is 11-12 during the first cycle.
• Release from the hospital will be at least 12 hours after the last IL-2 dose or longer if needed. (Saturday, the 23rd, if all goes well.)

 Ian then emphasized that side effects are to be expected. In fact, side effects are an indication that the drugs are doing their job of activating the immune system to release T-cells in the bloodstream into the tissue to attack invaders such as cancer. (He said to imagine the bloodstream as a garden hose with lots of tiny holes leaking out the T-cells!)

    High-dose IL-2 generally causes significant side effects in all patients that may be severe:
    ·       fatigue, chills, fever,
    ·       skin reddening and itching with peeling of the top layer of skin, (Itching being most irritating!)
    ·       loss of appetite, heartburn,
    ·       nausea, vomiting, diarrhea,
    ·       fluid retention, weight gain,
    ·       nasal congestion, eye redness, mouth sores,
    ·       sore muscles, sore joints, and headaches. 

     These side effects generally increase in frequency and severity as more IL-2 doses are given and go away quickly after IL-2 is stopped. (Some may last several days to a week.)

 More severe side effects that can occur with IL-2 include:

    ·       lowering of the blood pressure to the point of feeling light-headed, dizzy, or even black-out. Low blood pressure can usually be treated with IV fluids or a medicine called phenylephrine to raise your blood pressure. This medicine requires close heart and blood pressure monitoring that is generally provided on the oncology unit but rarely may have to be provided in the ICU. Although blood pressure might be normal at rest in bed, it tends to drop when getting up or to go to the bathroom. If blood pressure drops when out of bed, you could pass out, fall, and injure yourself. For your safety, a nurse or other staff member will assist with ALL out of bed activity, including use of the restroom.

     ·       Fluid retention in the lungs can result in cough, shortness of breath, and wheezing. Fluid can also collect around the outside of the lungs in the chest cavity.

     ·       Changes in thinking and perception can occur and range from mild confusion to complete disorientation (delirium, hallucinations), belligerence, or coma. (Ian said not to be surprised if Mark saw bunnies hopping over his bed!)

     ·       A temporary decrease of liver function resulting in jaundice, and liver cell damage.

     ·       Decreased ability of the blood to clot can result from liver damage.

     ·       Changes in other blood tests such as magnesium, calcium, phosphorus, sodium, potassium, uric acid, protein, albumin, and glucose commonly occur.

     ·       A small percentage of patients have experienced serious infections requiring IV antibiotics. The risk of infection is greatly reduced by giving antibiotics throughout the treatment cycle.

     ·       The ability to produce red blood cells and platelets, both of which may occasionally lead to blood counts low enough to require a transfusion(s).

 Other rare side effects that have occurred with the use of IL-2 include:

·       stroke,

·       gangrene (infected and dead skin and tissue),

·       fluid around the heart, fluid in the abdomen,

·       a clot around the IV catheter through which the IL-2 is given, and a blood clot in a vein that reduces blood flow to the area below the clot.

·       inflammation of normal organs due to autoimmune diseases such as joint (arthritis) and thyroid conditions (overactive or under-active thyroid). The symptoms of thyroid conditions may include heart pounding and feeling very tired or anxious.

·       Small white patches on the skin called vitiligo, which is usually harmless but is a permanent change. Vitiligo has only been seen in patients with melanoma.

·       In rare instances, this treatment can cause death.

 Despite the potentially severe side effects of IL-2 treatment, thousands of patients have been treated with high-dose IL-2 since its approval. The doctors will manage IL-2 side effects with medication or by skipping or stopping IL-2 dosing, if necessary. Each patient will receive the maximum safe number of IL-2 doses based on their individual side effects.

 After that thrilling phone conversation, we were content to get back to the business of tree removal!

 I had already felt that this treatment would be much harder than others have been, so I was not surprised by some of the side effects, but wow, it seems pretty intense! While Mark is not excited about going through it, he is not afraid and continues to be at peace. I think it’s been good to have plenty of other things to keep us occupied!  We did manage to get in a movie last night and ate a pint of Graeter’s ice cream the night before!! 😀

We will keep you updated on his response to the IL2 treatment. How we appreciate your love and support! 

Stress Test Success

(I had to change the name of this post to something besides, "He Passed with Flying Colors." Bret, Mark's business partner, told me that he about had a heart attack when he saw the first two words of the title! 😁)

This morning Mark had two stress tests -- one for his heart and one for his lungs. As he looked around the room at the others going through the same procedures, most much older, he felt quite confident. A few hours later, it was confirmed that he had passed.

Ian, who is working with Dr. Taylor for the Interleukin 2 protocol, emailed that the doctor had seen the results and we have a green light to proceed. Mark was rereading Ian's initial email before setting up the stress tests, "I've placed orders for you to have an exercise treadmill test and a lung function test. These tests are designed to stress out your cardiovascular system BEFORE we give you IL2 because the drug most certainly will." Oh boy!!

Next Wednesday morning, the 13th, Ian will go through all the details of what to expect. He also indicated, "there is an extra week in there between cycles 1 and 2. This has to do with Covid and managing available bed space throughout the hospital. In non-Covid times it's not uncommon for patients to have three weeks between cycles. I can assure you there is no clinical consequence related to this additional week. The additional week of recovery may actually benefit you, although in reviewing your stress test, I'll say I'm quite impressed with your stamina. I didn't last nine minutes during my stress test!"

In reading through the last post, we realized that it sounded much more positive than we initially felt. It was like a punch in the gut when we got the news. My chest was so tight that I felt like I could hardly breathe. It took some time to wrap our heads around it. Recently, I have noticed that my eye twitches often. I assume it's an indication that my body is a bit more stressed than I realized, although, for the most part, we are calm.

After hearing the news, I commented to Mark that we should spend the next few weeks watching movies and eating our favorite ice cream! A few days later, a package showed up on our front porch--6 pints of Graeter's ice cream, including my favorite, Double Chocolate Chip! We've been too busy to watch any movies, maybe next week! Mark has been occupied this week with preparations for Stake Conference, which is this coming weekend.

These challenges cause us to feel more deeply the pain that others are going through--like the young man we know who is experiencing very painful effects of cancer, and his family who feel helpless and want so desperately to take away his pain, and the cancer! Our hearts hurt for them and many others who are experiencing heart-wrenching trials. 

The day after Christmas, my sister-in-law had a brain bleed that the doctors found was caused by lung cancer that had metastasized to the brain and liver. (She never smoked a day in her life.) The prognosis was not good, but they thought she had weeks or even months to live. She went home on New Year's Eve, and on New Year's Day, she passed away peacefully surrounded by her children and grandchildren. She was so dear to all she had so diligently served, and she will be missed terribly,  especially by her family. The consolation is that my brother who died of Parkinson's 17 1/2 years ago,  is thrilled to be with her again!

The anguish of losing those dear to us indicates the love we have for them, so we mourn, as we should. I don't want to think of what it would be like to live without the love of my life, but it does cause me to feel empathy for those who are currently dealing with loss. Nevertheless, it is part of this life experience, so we mourn with those that mourn. But, we can also rejoice with those that rejoice!

On a bright note, the Graeter's ice cream is incredible!!! But, what we had to go through to get it!😅

Off to the Races (Treatments) Again

Mark had another PET scan this past Monday and learned the results on Wednesday at his appointment with Dr. Taylor. With Covid precautions, I can’t go to the appointments, so Mark patched me in via phone. He could tell from the doctor’s countenance that something was amiss. Dr. Taylor pulled up the images manifesting a golf-sized tumor in Mark’s liver. There was only one, but it indicates that the cancer has found a pathway around the medications, and other tumors will likely start growing. We have known all along that the current therapy is only a stall, so it was just a matter of time. Fortunately, this round provided 10 months with an excellent quality of life. Tafinlar and Mekinist were started on the 21st of February 2020. Despite all the craziness with a pandemic, natural disasters, and political unrest, we have had a wonderful year. Covid-19 allowed us to have more time together at home, and every day was a blessing! 

Dr. Taylor went over several treatment options:

1. Remove the tumor in the liver. The liver grows back quickly, so that wouldn’t be a problem, but the surgery is not easy, and other tumors will likely start growing soon. Why go through the surgery if it's not going to make a difference?

2. Radiate the tumor. The same problem exists-- the problem is likely more systemic, which would require therapy for the entire body.

3. Go back to Keytruda. It worked well before with minor side effects, but a tumor grew several months after the round of infusions, so it is not durable, but could be used again for a stall.

4. Clinical Trials – None currently have proven positive outcomes.

5. Interleukin 2. This therapy has been around for over 20 years. We have not used it because it is so hard on the body, but it does have a chance of complete response. The window of opportunity of using this treatment is closing, as Mark needs to be in good general health. It is typically not used in patients over age 65 or 70. Mark will soon be 69. Interleukin 2 involves one week in the hospital with daily infusions. Multiple side effects must be monitored. Two weeks at home and another week of infusions in the hospital. If scans reveal shrinkage or at least no growth, he can go to round two, which would be the same procedure. Three rounds are the maximum dosage, as long as there are positive results, and he can handle the side effects.

Our current best option is Interleukin-2. The snag is that Mark must pass the stress tests. His lungs seem to be in good shape, but he continues to have irregular heartbeats. If his heart is not strong enough, that will nix the deal. The stress tests will be scheduled soon. He will stop the current medications about a week before the tests. Dr. Taylor believes he has a better chance of passing the tests if he is off the current medications. They could be affecting his heart.

About 25% of patients receiving IL-2 have a positive response, meaning that the tumor either stops growing or shrinks. Somewhere between 5-8% have a durable response, a prolonged response beyond what is ordinarily seen with treatment, perhaps extending life for a year or so. A complete response can only be determined if the patient has no evidence of cancer for an extended period of time and lives years beyond what is expected. When Mark was first diagnosed with cancer almost 9 years ago, he had about a 3% chance of survival, so we’re okay with small percentages!

While it is always hard to get negative news, we knew it would eventually come. Now, we will get on with the next treatment hoping that it gives us more time together. If Mark passes the stress tests, he will begin the first set of infusions on January 18, 2021. The typical hospital stay is 6 days (and I can stay with him – YEA!)

Our ultimate hope is in our Savior. Recently, President Nelson said, "The question for each of us ... is the same. Are you willing to let God prevail in your life? Are you willing to have your will swallowed up in His?'

Recently, we came across a poem that was helpful to us years ago when we lost a business, resulting in severe financial challenges: (There are various renditions, but this is one we first heard.)

My life is but a weaving, between my God and me.
I let Him choose the colors. He worketh steadily.
Ofttimes He worketh sorrow, and I within my heart.
Forget He sees the pattern, while I see only part.

The dark threads are as needful in the weaver’s skillful hand
As the threads of gold and silver in the pattern, He had planned.
Not till the loom is silent, and the shuttles cease to fly,
Shall God unroll the canvas and explain the reasons why.

Elder Neal A. Maxwell said, “Now, as you and I look at our lives . . . , we sometimes do not understand that through which we are passing, but, being submissive, we can trust Him.
“The day will come when the tapestry of your life will be unfolded, and you will see divine design all through it, and praise God for the experience and the tutoring which, in His goodness, He has given you” (“Willing to Submit.” [address given at BYU—Hawaii devotional, 9 Feb. 1988], 8).

That said, it is NOT easy to go through these challenges. Tears and heartache are real. Talking about it now, when Mark feels great, is vastly different than when he is weak and sick. During those times, we will lean on the kind, loving support of family and friends. The love of others and the peace that comes from our Savior bring sweetness in the midst of pain.

Also, we recently have had some special feelings that give us much hope. They have led us to "fear not" but to have faith. We are truly grateful for your faith, hope, and prayers.