Home and Doing Amazingly Well

Every day we have seen marked improvement! Side effects are primarily mild fatigue, dizziness, nauseousness, muscle weakness, itchiness from skin dryness, headache, a new cough, and VERY vivid dreams. Ian explained that the dreams are a result of neurotoxicity. They don't try to do that to patients, but it sometimes happens. Mark's is actually mild, as some patients get very belligerent--pull out cords, try to leave the hospital, have a total personality change, etc. Yikes, I hope that doesn't happen next time! 

Because of scheduling conflicts, we get to go back in two weeks instead of three, on February 8th. Oh boy! Actually, that's the standard regiment. After the second round, a CT scan will be taken a few weeks later. If the tumor has shrunk or at least hasn't grown, he will be eligible for the 2nd cycle of two times in the hospital with  2-3 weeks in between. 

So far, it has not been as difficult as we had anticipated (well, except for a couple of times in the hospital!) Your prayers, love, and support are making a difference! Thank you so very much!!

Going Home - YEA!!!

What a difference from yesterday morning to this morning! Mark is back to his humorous and happy self. He still gets nauseous and will stay on some medication for that, and he gets fatigued easily. But, he is eating again, and all his systems are back in working order. The only issue today is that his platelets are deficient. Normal is between 150-450, and he was down to 30, so he got one bag of platelets to put him up to 50. Actually, the only reason he is getting platelets is that the central line IV is being removed from his neck, and they don't want him to bleed! Once removed, the nurse will hold pressure on the spot for 5 minutes, then Mark will need to lie flat for half an hour. 

It's done. I watched the nurse pull out the 8-inch line. The tiny blue tip goes right to the heart. Amazing! (I got a picture of the IV line if you wanna see it!)

So here's the good thing about having low platelets:

Research shows that there are three indicators that IL-2 will more likely work to shrink tumors:

1. Low blood pressure during the treatment, with the need for phenylephrine. Check - that happened.
2. Low co2 (carbon dioxide). Low is below 20, and they don't like to go below that. Mark's got to 21, so close to the low level without going below. Check.
3. Low platelets. Check - that happened. (BTW, our son Eric has given 86 units of platelets over the last 5 years!)

So, Mark's response indicates that he is more likely to respond positively to this treatment. Of course, no one really knows, but those indicators seem to be present for those patients who have had a durable response.

We should be leaving in less than an hour. Mark will not be able to drive for three days; he needs to rest, not lift anything heavy, do not get a neck massage (someone did that and got a blood clot), or do anything that could cause bleeding where the IV was removed from his neck. Otherwise, he should be back to normal in less than a week. Skin issues could still be a problem, but much of the redness has gone away, so he may not have the rash.

ROUND 1 is DONE! We're excited to go home!! I thought I'd get this posted before we leave, as I may have less time later. Thanks again for all the support, love, and prayers! 

With love and much appreciation to you all!!! 

Day 5 of Interleukin 2

This morning Mark was still suffering from the side effects of the two infusions yesterday--it seems like he's a one-a-day guy. His reaction was severe enough that no infusions were given today. Ian told me that along with the side effects he's already had, Mark now has neurotoxicity. Some of the toxins break through the brain barrier, causing agitation and confusion. That's when hallucinations often happen, but he still didn't see any bunnies! 

The nausea was so bad earlier today that he couldn't even tolerate a sip of water. Getting pills down was impossible. The normal nausea meds weren't working, so he was given Ativan. It caused him to sleep most of the day, but considering how miserable he was, that was a good thing! This afternoon, he ate some ice cream, and this evening he even ate part of his dinner, so that's huge progress. We're moving in the right direction, still hoping to go home tomorrow.

Dr. Taylor is actually surprised that Mark got 5 doses due to his adrenal insufficiency. The nurse explained that this treatment is like putting logs on a fire. It takes several to get it going, but once it's going, it only takes a log or two to keep it going. Because he doesn't produce cortisol, it didn't take as much to activate his immune system. Next time, his body will know what to do, so he will likely have even fewer doses. 

I may have mentioned before--Dr. Urba and Dr. Curti were both involved in the research and development of IL-2, and Dr. Urba ministered the first dose here some 25 or so years ago. They are experts! Dr. Taylor is learning from Dr. Curti. Our nurse today (and Tuesday) has been working with IL-2 patients for about 10 years. She is amazing--competent and kind! 

This is the ONLY hospital where IL-2 patients stay in regular rooms even when they develop severe side-effects. such as Mark had when his blood pressure dropped so low. Typically, when that happens, the patient is sent to the ICU for intravenous phenylephrine (NeoSynephrine). Here, the cancer unit nurses are trained to administer it, so going to the ICU was not necessary. We are so fortunate to live close to this Cancer Center. People come from all over the world to be treated here. 

How we appreciate the love and support that we have received from so many. Your prayers are making a difference! Our wall is getting full of notes, photos, artworks, etc., from our family--just a little room left for tomorrow! 

Day Four of Interleukin 2

 Good news--we both slept better last night. Without the blood pressure cuff, he was only awakened every two hours instead of every 15 minutes! Our daughter dropped off a mattress pad for the fold-out chair and a noise machine. Between the two of those, for me, it felt like heaven! 

With his blood pressure back to normal, he was given the 7 am infusion. Side effects weren't quite as bad this time. He didn't even get the severe shakes. Medicine helped nausea, although it never goes away completely. So...around 4 pm, he got another dose of Interleukin 2. This time it really whomped on him. He shook violently, but it's still amazing to me how fast the Demerol calms him down. It leaves him worn out. Then the vomiting and diarrhea started. Medicines helped, but he feels awful. For the past hour or so, he has been able to sleep, which is a blessing. When he wakes up, he's groggy and always nauseous. His skin is getting redder, and he looks puffy everywhere because of water retention. It's a lot to go through. Of course, it's definitely worth it if it helps the tumor go away! This time we were anxious because we didn't know what to expect. Next time, we will know, and it could be harder for him to know what he has to endure. We hear that each time could get a little worse. He's a trooper, though, and will get through this! 

Only one more day of infusions, and hopefully, we can go home on Saturday. Some of the side effects go away quickly. Others linger, and he will be exhausted, but it will be nice to have a three-week break!  

On a rather humorous note, one of the side effects that must be rather common is hallucinations. Ian mentioned that I shouldn't be alarmed if Mark saw bunnies hopping over the bed. Mark was rather taken back by this and wondered, "Bunnies, why bunnies?" When the doctors, Ian, Roxanne, and the nurses were here yesterday morning, they asked if he had seen any bunnies. Mark asked, "Why bunnies?" Dr. Taylor explained that people saw different things. Some saw floating flowers and clouds, while others saw scary spiders or bugs. So why did Ian say bunnies? Evidently, two of his recent patients mentioned bunnies! That doesn't sound so bad, but for Mark, it's not so pleasant. For years he had nightmares about bunnies. When he was young, he raised rabbits--lots of rabbits. He and his dad had built a condo of cages for them. One day he cleaned them up to show some guests who were visiting that evening. When he took the folks out to see the rabbits, to his shock and disgust, there were lots of new-born bunnies on the wire, getting smashed by the rabbits. Somehow, he had missed keeping track of the day the mothers were to give birth. Typically, he put the mothers in hutches with straw, and they made a soft nest with hair plucked from their chests. Several mothers had given birth to bunches of bunnies that evening, on the wire. It was a grotesque scene, and Mark had the awful task of cleaning up the mess. For years he had nightmares of bunnies bouncing on the ceiling, asking him why he killed them! So, he doesn't really want bunnies jumping over his bed! So far, none have!!

Day Three of Interleukin 2

After posting last night, Mark's blood pressure dropped to 70/46. Three bags of intravenous water (bolus) did not bring it up enough, so he has been on Phenylephrine since last night. A blood pressure cuff was placed on his arm, which tightens every 15 minutes. That made for a less than restful night's sleep. Besides that, all vitals are taken every two hours. Sleep and hospitals do not go together! 

Because of the blood pressure issue, no infusions have been given today. He has had 3 so far, which Dr. Taylor is actually pleased with. 

Today he has been able to eat a little more and was perky for a little while, although it didn't last for very long--just long enough to open today's cards and notes from our family. Nausea still comes and goes, as well as other flu-like symptoms--achy, weak, feverish, and digestive tract issues. Besides the red glow on his skin, he is now looking a little yellow from jaundice. Tonight he is feeling quite sick but hoping to sleep as the cuff came off at 10:30 pm. 

I'm so thankful I can be with him! It breaks my heart for those who cannot be with loved ones. 

Day Two of Interleukin-2

I thought I might not write everyday, but it's a good history for us, so here's what happened today.

Written at 11:00 am:

Mark's response to the first dose of Interleukin-2 yesterday was enough that the 11 pm dose was not given. Dr. Taylor explained this morning that he expected this outcome because Mark does not produce cortisol (side effects of the treatment over a year ago that affected his pituatory gland), resulting in a stronger immune response. Besides the nausea and rigors (extreme chills and shakes), his heart rate increased and his blood pressure (top number) dropped to around 88. Below 85, intervention is needed to keep it from going any lower. He didn't need that, but they determined that another round of IL-2 would not be wise until his blood pressure was higher. If a dose it dropped, they prefer the one at 11 pm. Patients fare better during the day, and if there is a major problem, there are less doctors and nurses available at night. Another problem is that his creatinine levels ramped up in his kidneys, so that is being monitored, as well. 

He was finally able to rest through the night, except for routine check-ups every couple of hours. This morning he was stable enough for his 2nd dose which was given at 7 a.m. He hadn't eaten anything yesterday after the IL-2. This morning he was able to eat 4 small bites of breakfast before side effects kicked in. Almost exactly an hour and a half afterwards, he developed rigors again. This time warm blankets did little to help, so a dose of 25 mg of Demerol was given through the IV which went straight to his blood stream, calming him in seconds. That was amazing! 

We were concerned that with missed doses he may not get the immune response needed to fight the cancer, but that is not the case. Because Mark's immune system is responding so dramatically, he may not need as many doses to do the job. Some folks need more doses to create an immune response. So, while 14 doses is the maximum. no one gets that many, and it is possible to get as few as three in one round, and still have a positive outcome. It is likely that his body will react even more quickly the next time we come to the hospital for IL-2. The T-cells know what they are supposed to do so they jump into action as soon as they get the message to go. 

The doctors and nurses are spectacular! Each nurse has been competent and kind. Most have worked with IL patients for years so they know what to expect and how to alleviate side-effects quickly. 

Written at 7:00 pm:

There was a pow-wow this afternoon with a team of doctors to determine if Mark should have the next dose. The decision was YES, so the 3 pm infusion was given. Just like clock work, an hour and a half later, the shakes began. So...the magic number is an hour an a half--we can count on it. Nurses hurried in with warm blankets and Demerol. Within seconds the shakes stopped again. A mild headache has continued, and he is nauseaus. No dinner, for sure, but he is drinking a little. Oh, and his skin is getting red like he has been out in the sun, and he is running a low grade fever. His blood pressure is right at 85 so he got a bolus (literally a bag of water given intravaneously) to help raise his blood pressure. It brought it up to 88. He can get three bolus before medication is required. 

Mark doesn't feel great, and he sleeps most of the time, but it has been better so far, than we thought it might be. We don't find out until 9:30 what the doctors will determine for the 11 pm dose, but we feel quite confident that it won't be happening which will make for a better night's sleep! 

Oh, there's one more thing I forgot to write about yesterday. When we picked up the Daily Joy book that was in our special box, we opened to the page with the ribbon bookmark. Rachel assured us that she had not placed it there. This is what we read:

DOUBT NOT, FEAR NOT

"Look unto me in every thought; doubt not, fear not." (Doctrine and Covenants 6:36)

"Our focus must be riveted on the Savior and His gospel. It is mentally rigorous to strive to look unto Him in every thought. But when we do, our doubts and fears flee . . . Faith in Jesus Christ propels us to do things we otherwise would not do. Faith that motivates us to action gives us more access to His power." 

Our theme has always been "Fear Not, I am with Thee, " so we felt that it was there just for us. 

With love and appreciation,

Ane & Mark

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!😅