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.