Last Day of IL-2

Because Mark did so well, he got THREE doses of Interleukin-2!!! Dr. Taylor expected only one, so he was thrilled. But no more--this aspect of the treatment is over. Yea!!! The rigors were the most challenging part for Mark. The first time was the worst, and yesterday's was pretty bad. Dr. Taylor and Roxanne were here yesterday during this episode, so they saw how awful it was for him. He told us that we'd see how his labs were, and if it looked good, he could have one more, but he would leave the decision up to us (Mark--I'm not making that call!) This morning they came in, and Mark was willing to go through it one more time. Dr. Taylor had already told us that three doses would be the limit. 

The nurses were ready with warm blankets and Demerol but were out of the room when the rigors started. As soon as Mark exhibited the first signs of chilling, I found them, and they came running. Perhaps because they were on it so fast, it was not nearly as bad as the prior two! That was such a tender mercy, as he was really dreading it. Now, he is sleeping peacefully with between 15-20 blankets piled on top of him. 

He is now receiving daily shots of Filgrastim to treat neutropenia (low white blood cells) caused by the chemo. "It is a synthetic form of a substance that is naturally produced in your body called a colony-stimulating factor. Filgrastim helps the bone marrow to make new white blood cells." It has a long list of side effects, as well, but it's essential to get his immune system up and running smoothly again. Claratin, the allergy medicine, is actually used with it, as it combats some of the side effects. 

Dr. Taylor said that his white blood count is still going down and should hit the lowest level in a day or two, and then it will start shooting back up. When it's back to a safe level, he can be discharged, which could be as early as the middle of next week, but more likely the end of the week. 

Now some explanation as I understand it about T-cell therapy. There are different kinds.

• TIL (tumor-infiltrating lymphocyte)  therapy is a treatment in which "tumor-infiltrating lymphocytes (a type of immune cell that can recognize and kill cancer cells) are removed from a patient's tumor and grown in large numbers in a laboratory. These lymphocytes are then given back to the patient by infusion to help the immune system kill the cancer cells."  This treatment has been around a long time and has had many positive results. The problem is that many T-cells in the tumor are grown along with the specific ones that actually recognize and kill cancer, so the percentage of actual cancer-seeking warriors is low.
• CAR-T is "A type of treatment in which a patient's T cells are changed in the laboratory so they will attack cancer cells. First, T-cells are taken from a patient's blood. Then the gene for a special receptor that binds to a certain protein on the patient's cancer cells is added to the T-cells in the laboratory. The special receptor is called a chimeric antigen receptor (CAR). Large numbers of the CAR-T cells are grown in the laboratory and given to the patient by infusion." This has had great success with blood-type cancers but does not do so well with solid tumors. The T-cells seem to be killed by the cancer cells when they enter the tumor.
• ACT (adoptive cell transfer) is a therapy in which T-cells are taken from the patient's own blood, grown in large numbers in the lab, and infused into the patient’s body.
• Dr. Tran is doing ACT therapy, except he finds the exact cells that recognize cancer by putting small amounts of cells into Petri dishes and using proteins that mimic cancer as bait to see if the cells attack. This is very time-consuming, and often the cancer fighters are never found. Only two of these cells were found in the blood taken from Mark's body, and those two were not exactly the same. Those specific cells were cloned, resulting in 12.78 billion cells, but only about 7.5 billion will actually attack cancer. The others just tag along. They didn't develop into warriors. 
• This is a trial therapy--it has not been approved for general use. However, Dr. Tran has been working on this treatment for years and is eager to see positive results and have it approved to benefit more patients. 

If you were confused about how this therapy is different from other T-cell treatments, hopefully, this explanation helped a bit. It's all very scientific and definitely cutting-edge research. 

Since Mark got fewer drugs today, he is awake and feeling quite good, other than weak. If there are no more snags, he should be on the road to recovery! It could be months before we know if this treatment is working. If it's not, we'll probably know sooner, although he is still taking the Braftovi and Mektovi along with this since his tumors were growing too fast for this to work without them. He will have to go off of the targeted drugs at some future date to see if this treatment has been successful. Dr. Taylot said that we should definitely write a book about all of his cancer treatments and successes! 

Thank you so much for your unending love and support!

Before IL-2 (look at all those bags!)

About an hour after IL-2 

The Big Day is Here

This is the day we’ve been waiting for—12.78 billion cloned T-cells were infused into Mark’s body, about half of which recognize cancer (that’s different than what we previously thought)! It felt like a party when the team arrived with the small blue cooler containing those precious cells (Mark calls them the cancer-seeking Mandalorian warriors)!! Dr. Urba waved from the hall. Dr. Taylor, our oncologist and research doctor, Dr. Eric Tran, who has been cloning the T-cells,  Kim, the clinical research nurse, and Roxanne, the nurse practitioner over advanced treatments, came in together at 2 pm. This procedure is a big deal! 

While Dr. Tran explained the process, the bag was hung, and the flow began. I caught some of Eric Tran’s remarks on video. (Links below) While Mark is the 7th to receive this particular type of T-cell therapy from Dr. Tran at this hospital, three of them were a different process. The two others using this process were not melanoma patients, so Mark is actually the first in his class! While various forms of T-cell therapy have been around for a long time and have become mainstream, only a few hospitals in the country use this particular cutting-edge therapy, so again, how fortunate we are to be here! 

The T-cell infusion was event-free; only some mild chills and fatigue followed. At 4:40 pm, the IL-2 was given, and for the first hour, it seemed that nothing was going to happen. Then, at 5:45, the rigors started, and they were the most intense he had ever had. He shook to the core for at least 20 minutes. It took 3 doses of Demerol to calm him down, which knocked him out for an hour or so. He’s been in and out since then. His blood pressure has dropped and although it is not to a dangerous level, it will need to be checked every two hours throughout the night. Depending on how his body responds, he could have another dose tomorrow, but this could be the only one. Mark is being well cared for—fantastic doctors and nurses. I’m so thankful that I can be here to care for him, as well. The love and support we have felt today, from you and heaven, has been tremendous! 

        (L-R: Dr. Matthew Taylor, Dr. Eric Tran, Roxanne Payne, Dr. Walter Urba, Kim Sutcliffe)

https://photos.app.goo.gl/1bXtU2roFCwGtPY17 

https://photos.app.goo.gl/xqrTPH8o9m6UQXXn8

https://photos.app.goo.gl/J9HnV46cUZdZEnv99

 

Update Thursday, October 28, 9 am:

Mark’s blood pressure was good through the night, and other indicators were positive, so another dose of IL-2 was given this morning at 7 am. An hour later, the dreaded rigors kicked in. He had 3 doses of Demerol, 1 Dilaudid, and some Zofran for nausea, so he was out for a while. His fever went up to almost 102 but has dropped. Currently, his blood pressure is 90/54, which is expected. He is groggy and fades in and out. Even when he is only partially coherent, he thanks every nurse and doctor who comes in. 

This morning I read this verse in Doctrine and Covenants 124:15, and felt that Mark’s name could be substituted for the one in the text, “And again, verily I say unto you, blessed is my servant [Mark Hornibrook]; for I, the Lord, love him because of the integrity of his heart, and because he loveth that which is right before me, saith the Lord.”  When I read it to Mark, he said, with tears in his eyes, “I do love him!”

Chemo is Starting!

Late last night, Mark started feeling much, much better!!! Dr. Leidner is quite sure that he was low on cortisol. It's amazing how the body knows just how much to produce when it's under stress. Since he doesn't produce any, it's always a guess as to how much he needs--and it was much more than expected. High doses were given yesterday, along with lots of fluid. Today is night and day different from yesterday!! Infections, also, seem to be under control. so, CHEMO IS STARTING NOW!!!😃

As long as he doesn't have an allergic reaction, the next few days should be fairly boring. He will be tired, but the tough side effects won't start right away. We've been through training about what to expect, and how to take steps to stay as healthy as possible. I won't go into all of that, at least not now. 

After yesterday's blog, we wanted to get the good news out as soon as possible! With so many prayers in his behalf, it is having impact!! Maybe this isn't an appropriate analogy, but...it's kinda like, "The squeaky wheel gets the grease!" 😅

A Narrow Window

Yesterday afternoon, Mark was able to stand long enough for a shower. He and the male nurse noticed red, raised bumps on his abdomen. The rash quickly spread to his face, arms, chest, and legs. It was itchy and uncomfortable. He likely had an allergic reaction to the antibiotic for sepsis, so it was discontinued and another started. Poor guy can't get a break---everyday it's something else! Benadryl helped with the itching, and he slept quite well. Around midnight he was moved to a larger room with a beautiful view--that was a plus! (Of course, he didn't see the view until this morning.) I might even stay the night here, especially since the C-diff seems to be under control. 

When I arrived at the hospital this morning, the cancer doctors were examining Mark. One is filling in for Dr. Taylor, and he works closely with Dr. Eric Tran on T-cell therapy. He was forthright in telling us that Mark is NOT in great shape to undergo the T-cell treatment. His infections could become acute once chemo takes his immune system down, and his body may be too weak to fight. If it is started, he will remain in a tenuous position for several weeks. Unfortunately, today is not going very well--he is extremely weak, mostly sleeping, often dizzy, and occasionally nauseous. His blood pressure is lower than normal, but thankfully, he isn't running a fever or having chills. 

The doctors will be here again in the morning to make the decision whether to start chemo. The current plan is for only two days of chemo, two days of rest, and the infusion of T-cells on Wednesday, followed by IL-2. The infusion cannot be delayed any longer as the cloned cells start dying. This is our only window of opportunity to use the needle-in-a-haystack cells that have been multiplied many times over. But, is his body strong enough?  Again, supplicating heaven in his behalf would be greatly appreciated! With sincere gratitude!! 

Sepsis Again!

Yesterday morning, because Mark was so chipper, Dr. Taylor was confident that chemo could start on Wednesday, so the pic-line was placed. Unfortunately, Mark felt weak and sick as the day progressed, but we weren't too concerned since he is still healing from the C-diff.

This morning, he started running a high fever and had chills. More labs were done, and the conclusion was sepsis again! This requires a different antibiotic which he is now on. Of course, chemo will have to wait. Wiping out his immune system with sepsis in his body could kill him--the doctor was quite blunt about that. The cancer cells will continue to be cloned, and it seems another few days before the infusion won't be a problem. These infections are definitely the concern now. He cannot have the T-call therapy unless they are under control. 

Of course, having the sepsis manifest itself before the chemo was started is another tender mercy! All of your prayers are having a positive impact, for which we are most grateful. Continued prayers are appreciated. We're at a critical junction, but God-willing Mark can pull through again! 

Two Days Late, but Just in Time

Although Mark is feeling much better than yesterday, he still is dealing with the effects of C-diff. Saturday night was the worst--he hardly slept because of constant diarrhea. By Sunday morning, he was exhausted. He has not slept for more than 2-3 hours at a time for weeks/months. Before coming to the hospital, it was maybe one hour between nature calls. Last night, he finally slept for almost five hours straight! What a difference it made! That is a difficult feat in a hospital. It took several nurses actively running interference to keep intruders out. They managed to get his blood drawn after 6 am, instead of 3-5 am, which is the best sleeping time. (The blood-suckers come in, switch the bright lights on, and stick him with a needle--definitely disruptive to sleep!) The nurses on this floor are very sensitive to their patients getting sleep so they can heal. Some cancer patients are here for months, so they need rest. The nurse yesterday was sure that Mark had been suffering from sleep deprivation, along with the infection. 

This morning, Dr.Taylor met with Dr. Tran, who is growing the cancer-fighting cells, and the infectious disease specialist, focusing on fighting the infection. Together they came up with a plan. Chemo will be delayed for two days to give Mark's body time to heal. The pic-line will go in tomorrow, and chemo will be administered Wednesday through Saturday. That still gives enough time for his body to be ready for the infusion on the scheduled date, Monday, the 25th. This is the best possible scenario. Starting chemo now could aggravate the infection, but delaying the infusion would risk losing some of those valuable warriors. We appreciate our doctors working together to come up with the best option.

He has been here for 4 nights, so he only has about 16 to go! It already seems like a long time--just getting used to our new normal. We're certainly grateful for the fantastic nurses and doctors. We're in good hands, along with the very Best hands!

Another Ambulance Ride

On Monday, Mark felt good, still weak, but more energy, so we were looking forward to a fun week together before the Clone Wars began. Unfortunately, that didn't last long before he started running a low-grade fever, had severe chills, and was lethargic. While we hoped these were side effects of the cancer meds, they matched his symptoms before the last infection which went into sepsis shock. But, that didn't make sense because his labs continued to improve. Wednesday, when he went to his doctor appointment, we learned that his bilirubin count continued to move toward normal, indicating no blockage. So, what was going on?!!. 

Thursday morning, Mark awoke feeling even more exhausted than the day before. He managed a brief shower but started feeling faint. I helped him to the chair in the dressing room before he passed out for a few seconds. It wasn't long, but enough to remind me of the last episode. When he came to, he wanted to lie on the floor. He was so weak and pale!  Once he was situated, I grabbed my phone and called 911. They arrived at 8:15 am, and it didn't take long for them to determine that he needed to be transported to the Emergency Department, and Providence Portland was open.

I had a feeling that he would be staying, so I took time to pack. When I arrived, the decision had been made that he would be admitted. So he was in a holding area until a room became available. Finally, around 6 pm, he was taken to our favorite 7th floor, the cancer wing. That's where he would need to be on Monday, anyway. He continued being extremely weak, nauseous, chilled, and feverish. 

Friday morning, after more tests, the culprit was found. He has C-diff (Clostridium Difficile), a highly contagious bacteria in his stool caused by the antibiotic used to correct the last infection. It wiped out the good flora in his gut allowing this bacteria to grow. So he is on a different antibiotic, and today he is awake, eating, moving around, and feeling so much better. We're grateful for antibiotics, but they certainly can cause other problems! 

Dr. Taylor visited today and feels confident that the T-cell therapy can begin this coming Monday, the 18th. Another doctor would rather wait a few more days, but it all depends on the severity of his case and how Mark responds to the antibiotics. He will definitely be staying here until the Clone Wars begin. 

I got a room at the Providence Guesthouse, about two minutes away. It's nice to have a place for my belongings and especially to get a good night's sleep! Besides, I don't want to be anywhere near his bathroom! 

 So, once again, "Life is what happens when we're planning to do something else!" We've learned to roll with it, and it's incredible how so many things actually do work out--many tender mercies along the way. We feel so very blessed!!

What to Expect

This past Thursday, October 7, Dr. Taylor called with the news that FDA approval had been given! That was fast!! He met with other doctors in the department who work with T-cell therapy, and without expressing his bias, he explained Mark's situation to see what they would do. Each recommended starting as soon as possible. So, with their expert advice and our personal feelings, Mark will enter the hospital on Monday, October 18.

He will be at Providence Portland hospital, back to our beloved 7th floor. He has one week to gain weight and regain some strength. He is currently up about eight pounds! 

Kim, the nurse overseeing the procedure, called on Friday to review what we need to know with this treatment. (Most of this we already knew and shared in the last post. It's what happens after discharge that was surprising.)

• The first week Mark will receive chemotherapy to basically destroy his immune system! 
• The following Monday, October 25, the cloned warriors will be introduced into his body.
• IL-2 will be administered to help boost his immune system to produce more cancer-fighting cells. 
• Currently, his discharge is scheduled for November 3. but that will depend on how he is doing.
• For the following three weeks, he will need to go to the cancer clinic every day (including weekends) for about three weeks to get a shot and see if he needs blood transfusions and/or platelets. She assured us that some would be required. If so, he'll be at the clinic for 4-6 hours that day. 

The biggest concern will be infection! His immune system will be its weakest when he is discharged, so we must be extra vigilant that he is not in contact with anything that might compromise his weakened state. Already, we are taking extra precautions to isolate ourselves so as not to catch a cold, flu, Covid, or anything else. If he got sick this week, he might not be able to proceed with the treatment, and the cells would be refrozen, which would cause some loss. Of course, he could also get sick from the normal bacteria in and on his own body. Actually, today he has been chilled and is running a low-grade fever. It could be an infection, but we're hoping it's from the cancer meds. (Prayers, please!)

Currently, Providence Main is allowing one visitor, but that depends on the Covid caseload. I was only allowed into the ER at St. Vincent because of their Covid numbers.  Kim is hopeful that I can stay with Mark as it is helpful for both him and the nurses. I certainly want to be with him! 

We may be more sensitive to potential infection than others might be. Our son, Tyler's best friend in high school, an All-American football player who would soon be graduating, got a sore on his leg that wouldn't go away. He was diagnosed with an aggressive form of cancer, but he was young and strong, so his treatment was aggressive. The tumor was irradicated, but an infection took his life.

While we would love to be close to our family and friends, please understand why we are hesitant and cautious. We certainly don't want to offend anyone and we will definitely miss the hugs! However, this is just for a time, and we hope that Mark will be feeling fantastic by the festive Christmas season! 

Today we have had tender feelings as Mark was released from the Lake Oswego Stake Presidency in the Church of Jesus Christ of Latter-day Saints. He has served for 12 1/2 years, and it has been a sweet experience. He has loved the people he served with and those he served. What a joy it is to serve others.

Thank you for your faith and prayers, it appears again, that this will be a crunch time. Mark will need all the help he can get, to make it through and destroy the cancer.

Let the Clone Wars Begin

Mark was discharged yesterday morning. It will take time for him to regain strength and gain some weight, but there's a much better chance of that happening here, at home. His potassium is still low, so we're focusing on foods high in potassium and lots of high-calorie foods. That's a shift in thinking! 

Dr. Taylor called this afternoon after meeting with Eric, who is in charge of the T-call therapy. He expects to get the okay from the FDA possibly as soon as this Friday. If so, they can take his cancer-fighting cells out of the freezer and start cloning them. It takes two weeks to clone the 3 billion warrior cells to inject into Mark's body. Before that procedure, he needs to be in the hospital for a week for chemotherapy to eliminate cells that fight against the warrior T-cells. That could mean going into the hospital as soon as October 18th (Happy 89th  Birthday, Mark's mom)! That's only two weeks away!!

Can he handle this arduous procedure with his body still so weak? That is definitely a concern, but if the current meds stop working, the tumors could grow quickly. The tumor near the bile duct doesn't have to grow much to cause blockage again. This may be the window of opportunity needed to use the T-cell therapy.  So, sooner may be better. We'll talk to the doctor Thursday to make the call whether to start October 18th or wait a week or two. Of course, the FDA approval has to come in this Friday for that to happen. The needle-in-the-haystack cells that have been frozen will need to be thawed before cloning them. If they have been thawed, and we decide it's too soon to begin the process, the cells can be refrozen, but some will be lost in the process. We don't want to lose any of those precious cancer-fighting cells. Please pray that we will be guided to know the right timing for this procedure. It's still amazing that those cells were found and that the FDA has responded so rapidly.  It won't be an easy procedure — two weeks in the hospital with chemo and more IL-2, but it is the only treatment available that has the potential to be durable.

It is delightful to have him home and to be together again. Our children joined us last night to celebrate another victory and express gratitude for the miracle of once again having his life spared! We laughed, cried, expressed our love for one another and our faith in the Lord Jesus Christ. It was a sweet, tender evening together.

Mark is glad to be back among the living and the sane! He doesn't remember much of what happened, even before the emergency, when he was high on painkillers that caused some hallucinations. We've kept a list of some of the funny things he said and did. Sharing those will be entertaining. 

What amazing and loving support we feel from you all!!! Thank you! Love, Mark, and Ane

Scan Results and More

Mark went off of the vasopressors last night. With some effort on my part, we got approval for him to start the cancer medications again. He needs them to keep tumors from growing! 

The MRI was not conclusive enough, so this morning a Hepatobiliary scan showed no obstruction in the biliary duct. That was also verified by labs that have shown a rapid fall in the bilirubin levels. So likely, the cholangitis inflammation caused the blockage, and the antibiotics cleared the pathway. However, a tumor had been pressing on the duct, which likely caused the cholangitis in the first place. The cancer meds may have shrunk the tumor enough to clear the duct, but the infection had already caused inflammation. 

The scan revealed that Mark also has a diseased gallbladder (Acalculous Cholecystitis) caused by medications, quick weight loss, and diminished liver function from extensive metastases. The team is currently deciding the next steps to take to resolve this issue. 

In the meantime, Mark is feeling much better. He was moved to a regular hospital room and continues to get excellent care.

Dr.Taylor got a response from the FDA today asking for clarification regarding the request for Mark to have the T-call transplant. He wrote the response this afternoon and should hear back from the FDA in a couple of weeks. If approval is granted, it only takes weeks, not months, to grow the warrior cells. Therefore, Mark could have this procedure much sooner than expected. Dr. Taylor is thrilled that the tumors are shrinking so quickly but is concerned about the longevity of the current medications The T-Cell transplant will be hard on his body, but it still has the possibility of eradicating cancer. So, we need to focus on getting Mark's strength back.

 Miracles keep happening, and we are so grateful!!! When I explained to Dr. Taylor all of the details about the emergency, he said Mark was minutes from death. He was emphatic that our son and Mark's sister saved his life!