Clinical Trial ALPN-202

Dr. Taylor is so much like Dr. Urba in his knowledge of cutting-edge research and his encouragement. Dr. Urba often told us that Mark could be the one to hit the home run. Even if the odds are low, Mark has often beat them with flying colors. 

We just finished our conversation with Dr. Taylor, so I will attempt to explain what we learned before we forget the details.

• The clinical trial that Dr. Taylor hoped for is available!. 
• Initially, he was told that Mark was not a candidate because he has had an adverse reaction to one of the immunotherapy drugs. The combination of  Ipilimumab/Nivolumab in the fall of 2019 wiped out his one remaining adrenal gland, causing adrenal insufficiency.  
• Dr. Taylor explained Mark's situation to the drug company that is responsible for the clinical trial. With Mark's excellent health, other than cancer, he received the green light. Besides, what do we have to lose?
• This clinical trial is "hot off the press," so there's no data on how effective it is, except for expert scientific data. However, Dr. Taylor is a research scientist and an oncologist in the field of melanoma, so he understands the science behind this trial. 
• It uses the CD-28 marker to turn on the switch to fire up the T-cells. This is a different approach than previous immunotherapy methods.
• Side-effects are the same as other immunotherapy drugs. The activated T-calls can attack organs like the kidney, liver, and lungs. The good news is that they can't affect the adrenals because they are already gone! 
• Current patients have had rashes and flu-like symptoms a week after the initial dose, but those symptoms have dissipated relatively quickly.
• The first dose will be administered in 2-3 weeks, so Dr. Taylor has prescribed other medications to manage the pain.
• The third-generation targeted therapy is also available, but it can't be used during the trial. If he started it right away, the trial would be postponed.  It will still be an option if the trial is ineffective or side effects prohibit its use.
• The TIL therapy that harvests T-Cells from the tumor is still in the research phase and has not been FDA approved. However, Dr. Taylor is hopeful that approval will come within the year, so it could be an option in the future. 

We asked the question, "How long would Mark have if none of these work? Weeks, months, or years?” Dr. Taylor quickly responded that it was more than weeks, but it would not be years. His best guess was 6-8 months, but of course, he is hopeful that something will at least slow down the growth and potentially do more than that. That is our hope, as well. 

Now, we'll move forward with Clinical Trial ALPN-202!!

We truly appreciate your love and concern! 

Definitely Not Better

Monday's PET scan results indicate that Keytruda, the immunotherapy infusion, is not working. The SBRT radiation obliterated the two tumors that Mark previously had, but now there's a new crop. We haven't seen the images, but the report indicates multiple lesions in the liver, a cluster in the lymph nodes at the base of the spine (which is likely the reason for the recently increased pain in the lower back), one in the hip, and a small nodule in his lungs. This is definitely not better! We read the report Monday evening and shared it with our children. While sleep was sparse, we continued cousin camp with three grandsons - ages 9-11. Distractions are helpful, and grandchildren are good for that. 

Tuesday, Mark talked with Dr. Taylor on the phone, and while he admitted that this is not good news, he was still optimistic. 

• There is a clinical trial that may be available with a different immunotherapy drug. So he is looking into that possibility and will let us know today or tomorrow after talking to Dr. Urba and others. 
• The targeted therapy that Mark has used multiple times - first Zelboraf, next the combination of Tafinlar and Mekinist --has a third-generation BRAF inhabitor, that may be more effective. These medications do not eradicate cancer but can shrink tumors, sometimes causing them to go away completely, which happened the first several times Mark used it.  Recently, though, they have not been as effective, as the last two tumors grew while he was on Tafinlar and Mekinist. Perhaps, this third-generation drug will have better results.
• Another option involves surgery to remove a tumor and find the T-cells that are already present. They are the immune system's warriors. They would be reproduced and reintroduced into the body. This is similar to the T-cell harvest, but these T-cells are already fighting, so they don't have to try and find the needle in the haystack.

We are amazed that there are any other options, but research continues, and Providence Portland is on the cutting edge with melanoma therapies. 

Mark's pain continues to increase, and pain meds are less effective, so we are anxious for something to shrink the tumors ASAP! 

Your faith and prayers have worked miracles. Now is a new opportunity for another miracle. Thank you for your love, faith, and prayers. Heaven is listening.

All Better Now?

...Well, as long as I stay on the Hydrocodone, it generally is. The pain is manageable, I can only sleep in one position, but that one works. The pain around the stent has subsided, the other, which we think is radiation pain, is about the same, but moves and changes up—it is the weirdest pain. 

This week has been amazing. We are preparing to have 150-200 single adults from our church - area-wide, age 31-45ish, in our backyard for a Saturday evening fun-filled event and dinner. As a result, I have had several projects on my to-do list for months, with no energy to do them. Then, out of the blue, this week I have had plenty of energy, and with the pain meds, I have been good to go. 

You know how typically, when you start a project,  you think it will go a certain way, and then stuff happens, and it takes longer and is harder than you thought? Well, this week was just the opposite. Ideas came and things worked out and everything was easier and more fun than we thought. It was awesome! I think we had help from heaven. Between my dramatic increase in enegry, things just working out, and people showing up to help, it has all come together. I think all of your good thoughts and prayers have brought about a miracle. So, here I am the day before the event, all is ready, and I have time to write this blog post!

Thank you all! We love you and wish the very best for you!

Next steps: PET scan on the 16th, Doctor appintment on the 19th, Keytruda infusions every three weeks, and the next stent removal or exchange on the 20th of September!