A Very Close Call

 Monday afternoon, September 27, Mark was awake, ate well, watched a movie, and was better than he had been in weeks. Tuesday morning, he was dizzy, nauseous, and vomiting.  Around 10 am, he passed out on his way to the bathroom. Fortunately, his sister helped block his fall. He came to enough for our son to help him into a chair, but soon he was totally unresponsive, his pupils were large and staring straight ahead, and his jaw was slack. It was awful for our son, who thought he was watching his father die. By the time the EMT arrived, Mark's blood pressure was around 60/40. He was strapped onto a stretcher and taken to the ambulance. Neither Meridian Park, the closest hospital, nor Providence Portland, where we typically go, were accepting patients into ER, as they were totally full. St. Vincent was the next option, and fortunately, they were open. We all thought that this was the end. If EMT had not arrived promptly, it could have been. 

Labs were done that indicated infection in his body, which had gone into sepsis shock. Other signs indicated cholangitis, an infection in the biliary tree caused by a partial blockage. That would account for his jaundice, nausea, vomiting, and pain in his upper abdomen. An MRI was ordered, which needed to be done yesterday, but the overwhelmed staff could not get him in until this morning. The MRI is essential to determine if an ERCP can be done to clear the blockage, He is still on vasopressors to keep his blood pressure from dropping, but it's now a low dose. He must be weaned off of them before he can leave the ICU. 

Visitors are not permitted in the hospital, but thankfully his mind is clear so he can communicate with us via phone, and he actually sounds quite good. The MRI is being done now, so we just wait to hear what will happen next. Please, please keep those amazing, beautiful prayers going. We believe he will pull through again, which is incredible. Yesterday, my prayer was to keep him alive until I could be with him in the ER. I was amazed that he was responsive when I arrived and so very thankful. Your love and support have sustained us! Thank-you!!!

Braftivo & Mektivo

 Mark started the new targeted therapy medications last Wednesday evening. Thursday morning, he had his last dose of Hydrocodone and Haldol. He has been pain-free since then! The Fentanyl patch is on, but it was due for a change on Friday. Dr. A had us leave it on since it will gradually wear off. Mark has been able to lie on his right side and on his back, something he hasn't done for months! Obviously, tumors are already shrinking!! 

Mark has always responded quickly to these targeted medications! While they are not a cure, they have shrunk and caused tumors to disappear. Our hope is that they will shrink the tumors which have caused a total blockage on the left side of the liver. We assume that is what is currently causing jaundice. Another blood draw will be done later this week. 

Since he started these meds, Mark has been even more exhausted and weak than before. Fatigue is the first listed side effect. In the past, fatigue was most significant while the tumors were shrinking. A lot is going on inside his body, so rest is probably the best thing. 

There are serious side effects that can happen with these medications, but he has handled the past targeted therapies with minimum adverse reactions, so we're counting on the same results. 

As described below, these drugs could keep the tumors from growing for a median of 14 months. That is definitely long enough for the T-Cell therapy to be administered after the cancer cells have been cloned. 

A week ago, I wondered if it was time for Hospice, but now, we have hope that it is not the end! Once again, we are amazed and grateful!! (We are preparing for the worst and hoping for the best!)

This is what I found online to describe these medications:

BRAFTOVI (braf-TOE-vee) + MEKTOVI (mek-TOE-vee) is a targeted oral combination therapy used to treat people with melanoma that has spread to other parts of the body (metastatic) or cannot be removed by surgery (unresectable) and has a certain type* of abnormal BRAF gene. (Mark has this mutation.)

BRAFTOVI + MEKTOVI is not chemotherapy or immunotherapy. BRAFTOVI and MEKTOVI are two targeted therapies that, when taken together, can be used to treat this specific type of melanoma.

BRAFTOVI + MEKTOVI is a kinase (KIGH-nase) inhibitor combination. By targeting the signaling pathway at different points, BRAFTOVI + MEKTOVI helps to inhibit increased activity that causes melanoma cells to grow out of control.

BRAFTOVI + MEKTOVI helped people live 2x longer without their cancer worsening

In the trial, patients (192 total) receiving BRAFTOVI + MEKTOVI lived without their cancer worsening for a median of 14.9 months vs 7.3 months for patients who were taking vemurafenib, another targeted treatment, alone.

BRAFTOVI + MEKTOVI has been shown to be more effective at helping tumors shrink or even disappear

In the same clinical trial, the overall response rate showed that 63% of patients taking BRAFTOVI + MEKTOVI saw their tumors shrink or disappear, compared with only 40% taking vemurafenib alone. (vemurafenib = Zelboraf, which was the 1st generation targeted therapy that Mark was given when first diagnosed in 2012.)

The Family Photo

 This past week has been full of ups and downs. Some days Mark seems to be making good progress, and other days, he does nothing but sleep. Managing pain has also been challenging. Last week, a blood test showed that the bilirubin count had gone down, but unfortunately, the one yesterday revealed that it was back up. 

After an hour on the phone with the specialty pharmacy, the 3rd generation targeted drugs, Braftovi and Mektovi, shipped, so we should have them tomorrow. In the past, these types of medicines have worked quickly to shrink tumors, so we have hope that will happen again. 

We had planned to get a family photo in early September since our last one was at our 40th wedding anniversary celebration in 2018. Since then, three additional grandsons have joined our family. But, as often happens, conflicts got in the way, so the photo session was canceled. This past Friday, the 17th, I had a distinct impression that we needed to have our family photo taken soon. I immediately contacted one of our children.  After looking at the weather forecast, we realized that the best option would be to get together that very day. Really? That certainly didn't seem very likely! Gathering our 5 children, spouses, and 19 grandchildren at the last minute with no conflicts seemed impossible. Nevertheless, phone calls were made, and to our amazement, everyone could come around 5:30 pm. The photographer we had planned to use was also available. It was a treat to have Mark's mother, stepdad, and two sisters with us, as well.

That was all fantastic, but we had another problem--Mark was so weak and exhausted that he had hardly been out of bed all day. But, after a special prayer, he joined us while the group photos were taken. He had a big smile and no pain the entire time, and although his color was a bit yellow, he looked fabulous! We got the digital images a few days later and were absolutely amazed at how well they turned out! It certainly felt like another sweet miracle. 

How we love this beautiful family!

Liver Obstruction

 We left the hospital around 7 pm from the stent replacement last Friday, the 10th. Mark slept almost constantly for two days after the procedure. From the report, I learned that the reason for the blockage was a new tumor. Nothing is stopping their rapid growth. By Sunday night, he was feeling a bit better, and his mind was clearing. Around 1 am, he became restless, so I gave him the proscribed Ativan to help him calm down. Shortly after that, he became agitated and extremely confused. Neither of us slept the rest of the night. In the morning, the pain management doctor asked about his symptoms which included dizziness, double vision, headache, nausea, vomiting, and hallucinations. She was concerned about a stroke, but he didn't have any of the other typical signs. Nonetheless, she encouraged us to go to the nearest ER, so Monday, the 13th, we spent the day at Meridian Park Hospital. 

The CT of the brain was clear, but his liver enzymes were elevated, which was not a good sign, especially since the stents had been placed. After the CT of his abdomen, we went home. Since Mark is so weak and unsteady, he could easily fall. When he is confused, he gets out of bed to do projects that his mind has conjured up. Our children made arrangements to be with me 24/7 to monitor him at all times. 

Tuesday morning, we learned that the cluster of growing tumors has caused blockage on the left side of his liver. Unfortunately, there's nothing that can be done except shrink the tumors. We had Tafinlar on hand that we have started. Yesterday his urine was lighter, indicating that the bilirubin count is decreasing. Maybe the tumors will shrink enough to allow drainage. Today we got word that the new generation targeted therapy drugs have been approved and will be mailed to us. They may work even better than the last ones.

Mark continues to have extreme fatigue. He can get up for short stents, but he has no stamina. An intermittent low-grade fever could be a side effect of the Tafinlar. Hopefully, it isn't from infection. Pancreatitis is always a concern after an ERCP, but he hasn't had the pain typically associated with it. Tomorrow's lab work will give us more insight into what is happening. 

Our pain management doctor has worked with many cancer patients. She said, as did Dr. Taylor that this can go either direction. He could bounce back with the targeted therapy, allowing him to possibly have the T-cell transplant, although that would be months away, as FDA approval is required for each individual case. Once they get the okay to proceed, it takes several months to clone enough warrior cells, and the procedure to put them back into the body is tougher than any other treatment he has had thus far. The clinical trial is no longer an option since we're using the targeted therapy. His body has been fighting cancer for 10 years, and it is getting more aggressive. His body may simply shut down, even if the blockage drains. She explained that cancer doesn't often progress along a typical timeline, as do some diseases. He could feel fine one day and be gone the next. It's good for us to know that so we are prepared. Our children and grandchildren are coming to visit a few at a time. There have been many sweet moments. It's not all sadness here. We laugh and enjoy our time with him and each other. 

How we appreciate all the loving support, we have and are currently receiving. We have no idea what tomorrow will bring, but today is a beautiful day. 

Another Stent Replacement

 We arrived at Providence Portland Main Medical Center at 9:15 am. The receptionist expected that I should pick him up around 1:30 pm. They were about an hour late getting started. In the past, his bile duct procedures were longer than normal so I wasn’t surprised when I learned that he didn’t get to recovery until 2:30 pm. When the nurse called and told me that he had to meet certain requirements to be released, one of which was to have no nausea, I though, “You may have him there for a week!” It’s getting close to 5 pm, and I just got a call that he’s still nauseous so the nurse will give him more anti-nausea medicine. An email notified me that there was a new report in his My Chart. It indicates that 2 stents were placed. YEA! Both times before, Dr. Razzak has wanted to place two, but hasn’t been able to do so. This should help the bile to drain more quickly, and bring his bilirubin count down, so he can start the ALPN-202 infusions.

Wednesday afternoon, we met with the pain management doctor. She reviewed what he has been taking for pain, and it has definitely been too much. She adjusted the dosage of some, took some away, and introduced others. One of the new medications will hopefully help with nerve pain. She explained that all of his tumors are pressing on nerves —even those in the liver are pushing on the lining which is where the nerves are. The cluster at the bast of his spine are creating the most pain. The obstructed bile duct has been another source of pain, but we have learned what he can and can’t eat—absolute NO beef and very little fat of any kind, as well as no sugar or processed foods. I’d lose weight, too, if I stuck to such a healthy diet.

Wednesday night, he started exhibiting some signs of confusion, agitation, and imbalance. He was up most of the night. Since I got very little sleep, our kids were quick to set up a schedule to help out. They’ve been wonderful! Yesterday afternoon through this morning one of them has been with us, and will continue tonight. Not only can I get rest and a few things done, they have added some much needed humor! 

Well, it’s now 5:30 pm, and I’m still waiting. I could have gone home, but last time I dropped him off, his liver biopsy was cancelled, so I was glad I had been close by.  I’ll post this now, and update it later with more info.

The current plan is for him to leave around 7 pm.  Sounds like he’s still very sleepy, a bit wobbly, and has some confusion, but is improving. (If I don’t post now, it may not happen.) 

A Firm Foundation

Our theme song throughout much of our married life has been "How Firm a Foundation." A few of the words of this hymn were put into Mark's mind when he would have anxiety over our struggling business years ago, "Fear not, I am with thee." Since the beginning of this melanoma journey, those same words have often given us comfort. At church meetings, this hymn would be sung at times that we needed it most. 

The words of the verse that have been most meaningful to us are:

Fear not, I am with thee; oh, be not dismayed,

For I am thy God and will still give thee aid.

I'll strengthen thee, help thee, and cause thee to stand,

Upheld by my righteous, omnipotent hand.

We have felt his hand in our lives on so many occasions. While some situations have tested our strength and resilience, we have never felt alone. He has always been there to give us aid, and he has literally caused Mark to stand when we wondered if he would ever stand again. Also, we have felt tremendous loving support from our dear family and friends. 

Today, as we were listening to a gospel study class, this hymn was referred to in how the trials we endure actually help us build a firm foundation. That gave us a new perspective. When we reread the entire hymn, this verses stood out to us:

When through fiery trials thy pathway shall lie,

My grace, all sufficient, shall be they supply.

The flame shall not hurt thee; I only design

Thy dross to consume and thy gold to refine. 

A dear friend shared a scripture at church today that reminds us that these experiences (she prefers "experiences" to 'trials')  are for our good. "...peace be unto thy soul; ... thine afflictions shall be but a small moment; and then, if thou endure it well, God shall exalt thee on high."

When we're in the midst of these fiery trials, it can burn, but this perspective gives us courage and hope. As we look back on our lives, we are grateful for many of those difficult experiences that tutored us and allowed for amazing miracles in our lives. 

Oh What a Night

 Yesterday afternoon, Tara called with some snags to starting the clinical trial. Mark's bilirubin count was slightly elevated, just barely above the allowed amount for the trial. Since there is Tylenol in the Hydrocodone, she and Dr. Taylor concluded that going off of it for a day might drop the level enough to allow us to move forward. Without it, Mark would need to increase the Hydromorphone (Dilaudid) dosage to control the pain. ALSO, the required tissue from a tumor in his body was at an off-site facility that would take a week to locate and retrieve. Tara was able to schedule a liver biopsy today after the morning MRI. If this worked out, the infusion could begin, as scheduled, on Tuesday, the 7th. 

Mark's last dose of Hydrocodone was at 3:00 pm yesterday, so he took a double dose of Dilaudid at 5:00 and 8:00 pm. His Fentanyl patch needed to be changed at 10:00 pm. By midnight, Mark was extremely confused and agitated. He could not think or communicate clearly and was frustrated that he couldn't figure out what was happening. After checking the severe side effects of Dilaudid and Fentanyl, I felt confidant that he had too much of one or both of these narcotics in his system.

Of course, I couldn't sleep in case his breathing became shallow, so at 1:00 am. I decided it was time to call  911. (This wasn't their first time here--they remembered the fall of 2019 when Yervoy attacked his pituitary gland, causing adrenal insufficiency.) This team of four agreed that he likely had too much medication in his system. Fortunately, his vitals were good, so he wasn't in imminent danger. After they left, hiccups started and lasted for 2-3 hours straight, paused for a bit, and started again. He actually slept through some of it--I can't imagine how. I certainly didn't, but I also couldn't leave the room because I didn't know what he might do. I hid all of his medications in case he thought he needed to take more. My other concern was that he would have to be still for the MRI in a few hours, which would be impossible with these constant hiccups. Maybe it wouldn't be a problem, but I was concerned and feeling sick with the lack of sleep. Finally, after some sincere seeking for heaven's help, we both dozed for a while. 

By morning, Mark had improved somewhat, although he was extremely nauseous. We headed to the Providence Imaging Center in Tannesborne for the MRI. He had hiccups on the way but never had them while he was there! On our way to Providence Main, they started up again. That was a sweet, tender mercy, as the MRI is essential to the trial. Later in the day, we learned that his brain was clear. What a relief!! A tumor in the brain could also cause confusion.

After getting him through admitting at noon, I had to leave the building due to Covid mandates. The estimated total time for the liver biopsy was 6 hours. I could have gone home but didn't want to be far away if anything happened. Knowing I'd have a long wait, I had put the foam pad, sheets, and pillow in the back of the Y, so I parked, crawled in the back, and slept! Around 2 pm, Mark called. Tara explained that he would not have the liver biopsy. Another blood draw today revealed that his bilirubin count had increased significantly, so now we had another problem. The CT scan showed some possible blockage in the bile duct. His scheduled stent replacement was for September 20, but it has been moved to Friday, the 10th. We are concerned that a week is a long time to wait. The last time he had a blockage, the pain was intense, and we ended up with two emergency room visits. If it's a partial blockage, it may not be a problem.

The good news is that the liver biopsy won't be necessary, as there will be ample time to retrieve the tissue from the offsite facility. It was taken from a tumor in Mark's adrenal gland that was removed in September of 2016. 

Of course, this will push back the first clinical trial infusion by at least a week, so the tumors will keep growing. 

Mark has been sleeping since we got home around 3:00 pm this afternoon, with no hiccups--YEA!! 

I'm reminded of a few of our favorite sayings, "Life is what happens when you're planning to do something else!" and "Blessed are the flexible, for they shall not be bent out of shape." 😄 Somehow, this will all work out. 

Fantastic News

The past week has been tough!! Mark's pain has increased in intensity almost every day. The cluster of tumors at the base of the spine hurt his back, cancer in his hip has now grown enough that it causes pain, and the tumors in the liver are pushing on the lining where the nerves are, so the pain in his side gets quite intense. Last Sunday was the worst, so we texted Dr. Taylor. Quickly, he gave us advice on how to manage the pain with the meds we already had. Mark wears a Fentanyl patch, takes Hydrocodone every 4 hours and Dilaudid every 3 hours. His pain rarely goes away completely, but it definitely helps. When I asked him if he has times with absolutely no pain, he said it happens occasionally, and when it does, it's worth celebrating! Next Wednesday, he will meet with a Palliative Care specialist to help manage the pain until the tumors shrink.

Today we met with Tara, who will oversee the clinical trial ALPN-202. We signed the papers and will actually get paid a small amount to participate in the study. She also gave us our schedule. The CT scan was done this afternoon, and the MRI will be this Friday. The first infusion is next Tuesday, the 7th, which is sooner than we had anticipated! He'll be at the clinic for at least six hours, and I can't go in with him (darn Covid!). (I still have to drive--he can't, with all these drugs!)  It takes about an hour and a half to administer the medication, but he will have blood pressure checks after two hours and again after four hours. Then, it's lab work multiple times a week for the first week and exams and lab work weekly. After that, infusions will be every three weeks, for as long as it is working and he can handle it. We are thrilled to have this clinical trial available at Providence Portland at the exact time we need it! It is amazing!!

Dr. Taylor came in afterward and was eager to share with us more good news. The needle in the haystack was found!! This is INCREDIBLE!!! Dr. Taylor found out yesterday afternoon. The scientist found the T-Cells they were looking for a few days ago, but they retested to verify the results were correct before contacting Dr. Taylor. As soon as he heard, Dr. Taylor hurried over to share the news with Dr. Urba. They discussed the best strategy. While Mark is on the clinical trial, the T-Cells will be cloned, so there are billions of these fighters. The process will take several months, so it's a good thing there is something in the meantime. Also, the cells can be stored until needed. We didn't have much hope for this treatment because it is so rare to find the kind of T-cells that actually recognize and destroy the cancerous cells, but miracle of miracles, they were found!!! If the clinical trial doesn't work, it's on to the Clone Wars! 

Today we are much more hopeful! I'll admit that during this past week, I've wondered if we were getting close to the end, and we still could be, but more options are now available! Hallelujah!!!