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May 12-18

This Week

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Me, “What do you want the title of this update to be?” Danny (giggling), “There’s definitely shrinkage!” 

Me, "Do you want me to mention how you're feeling?"  Danny, "Just tell them I am fine.  I feel the same as before". 

Ready or not, we headed to Houston Wednesday after work for several appointments on Thursday and round 2 of Lutathera on Friday.   We started early Thursday morning.  Labs at 7:15, CT at 7:55, then doctor.  The morning flew by and we were late to the doctor’s appointment which would probably mean a longer wait…until we found out that our doctor was not even in the clinic today, he was only coming in to see Danny! 

Doc gave us CT scan results first.  

  • Compared to 2/16/24 , interval DECREASE in the size of metastatic lymph nodes! 
  • NO definite evidence of new metastatic  disease identified. 

What a relief!  You could feel the demeanor of the room change! Dr. Habra was so talkative and it even seemed like he wanted to hang out and visit!  He spent a long time with us talking about a plan and answering all of our questions.  Highlights of what we learned:

  1. Danny’s rare of the rare is even more rare for them because they have not seen metastasis go straight to lymph nodes.  It typically goes to bones or a major organ and his has not (thank God).
  2. Prior to this week there was significant concern on their behalf because it was growing so rapidly in both location and size.
  3. There is no known other case in which someone has been treated with the same two treatments that he is currently getting (daily pill and targeted radiation treatments).  Doc said that he wanted to attack it aggressively as fast as possible. 

Whew!   We left there feeling thankful for not knowing any of that before getting the fabulous news that his treatment is working!  

What’s next:

  • Since treatment is showing such improvement they are  NOT WORRIED about getting insurance approval for treatments 3 and 4 which are already scheduled for June and August.
  • We can plan to continue the daily oral medication (Lenvima) for at least another year.
  • Doctor wants to see him in September to reevaluate and plan our next steps. 
  • Immunotherapy is a possibility in the future.

Friday's treatment went well.  The nuclear medicine doctor was intrigued with Danny's case and had clearly done some research before we arrived.  He started the conversation with saying how rare this cancer is then added that  MD Anderson typically only sees approximately 4 similar cases each year and that his colleague on the east coast said their facility has about 2 cases each year.   He too was highly impressed with the results of the first Lutathera treatment.  Round two went as smoothly as the first!

Last but not least, we want to say THANK YOU to every single person who has reached out to us, prayed for us, and offered support in all the ways!  We feel the love and could not do this without our support system. 

"Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you." — Matthew 7:7

Keep on keeping on!!!  Much love and hugs to all!

 

 

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