We are coming up on the year mark of Nick’s diagnosis so I figured it was time to catch up. Nick was diagnosed on February 9th last year. We can’t believe it has already been a year since that life changing day! I know this day will be very emotional for Nick, so if you feel so inclined to send him a note or shoot him a text, I’m sure that would make him feel very loved. 

The last post I made was in May. At that point, Nick was going to have mutation testing done to see if his cancer had any mutations which would explain why he wasn’t responding as quickly to his TKI. The results showed that he did NOT have any mutations to his cancer, which was great news. 

We were also hoping that our oncologist would be able to suggest a more sensitive PCR test that would give us a more accurate BCR/ABL number. Apparently Methodist could not find us a more sensitive test so it was time to find us a doctor that could. At the end of July, Nick and I went to Rochester to meet with a new oncologist at the Mayo. 

The new oncologist told us that it was very strange that the test being used could not detect higher than 50%. She said that is standard procedure at the Mayo and we would be able to find out his accurate percentage in a couple of days. That helped Nick feel much more at ease. We would now be receiving instruction, testing, and care from Mayo. The doctor also assured Nick that even though he wasn’t hitting the typical numbers and milestone points, he was still on track and they weren’t going to change his medication. 

A couple of days later, we received his first accurate BCR/ABL percentage! His cancer percentage was at 33%. While this is still higher than the “average” 6 month mark, we felt thrilled that we finally had a number we could track. The oncologist at Mayo told Nick they would test again in October and they would just send a package here and he could go to a lab here to get it done! They made it super easy! 

Flash forward to October, Nick had his Bcr/abl tested again. This time it was down to 22%. Amazing! We finally know it is going down! Maybe not as quickly as the average, but all of his blood work is still normal and he’s trending in the right direction! Nick talked with the oncologist and she was still comfortable with his results and didn’t feel a need to change anything. However, she did tell him that she wanted him below 10% at the next test in January. If he didn’t meet that 10% mark, then it would be time to change TKIs. While we were happy to see a lower number, the thought of having to change TKIs made Nick feel concerned. Fortunately, he hasn’t had many side effects from the TKI he’s on, so the thought of switching was nerve wracking. 

Flash forward again to January. Nick had his bcr/abl test done again on January 15th. He got his results 2 days later and it was down to 9.4%! He hit the mark of being under 10%! This was super relieving news as it means he does not yet have to change his TKI. 

Nick will have it tested again mid March and hopefully it will just continue to trend down! 

While many “average” CML patients might see their numbers below 0 at the year mark, if you know Nick, you know he is anything but average! He always does things on his own time and in his own way and this is no different! We know he will eventually get there and we are just happy that he is feeling good and headed in the right direction! 

This past year has been filled with a lot of lows but many highs as well! We are thankful to have a great tribe who was there for us and continues to be there for us as we navigate this journey. This truly has been a trying journey that Nick has had to figure out how to incorporate into his life, but I think as time progresses, it is becoming more just a part of who he is and not WHO he is. 

Thank you for navigating this journey with us and for all the support you’ve given! 

Stay tuned! Major Molecular Response here we come!! 

❤️