Wednesday, October 7, 2009

Road Trip

I was fortunate yesterday to be able to spend a full day with Hans, as we traveled down to Portland to ask some important questions about his CML. We were able to catch up quite a bit, and rehash good times and bad times. Hans and I have known each other for the better part of 10 years now, and been through quite a bit......especially recently. We met through soccer years ago, and have shared many good times. I think most everyone that visits this site probably knows by now, that Hans was diagnosed with CML last fall when I was at the beginning of my transplant preparation.

When Mandy told me that Hans had CML, I was completely dumbfounded......and it felt like a train had just driven through me! I instantly and for quite a long time thought about everything Mandy and I had gone through about hearing the news at my diagnosis, as well as thinking about everything Hans, Cynthia and his family must be feeling upon hearing that news. It was really quite devastating, especially considering I was in pretty bad shape psychologically at the time anyway. It was so strange that now along with our friend Darren Rozendaal who had gone through a transplant about 5 years ago now, we now have 3 guys from the same soccer team facing the challenge of cancer at such a young age. It seemed and still does seem unreal to me!

Back to the road trip...........Hans had scheduled a visit with a doctor in Portland who is the author of a clinical trial with a 3rd generation CML drug that is currently being tested in approximately 40 patients with some very good signs. He wanted to discuss the trial with this doctor and not only see if he would be a good candidate, but get some thoughts on his journey with cancer so far. Hans is very much ahead of the game when it comes to this battle, as he has done an amazing job researching, tapping into others experiences, joining CML groups online, and anything he can to be at the forefront of the battle against CML. I was so impressed with his questions, his candor, and his preparation for the meeting with this doctor. I'm not sure why, because I should expect it from him. His reasons for checking on this are that he has not shown a cytogenetic response to Gleevec or Sprycel, and must now consider his next direction.

We really do hate that we have this in common, but there is nothing we can do about that but fight on together with our family and friends. I think in some ways it has made the challenge of fighting cancer easier to deal with, but in other ways it has made it more difficult. Sometimes too much information can weigh heavily on the mind. I know what he, Cynthia, and his family are going through right now and it is very unpleasant to deal with. We discussed yesterday that everyone in one way or another has, is having, or will have to deal with something similar or much worse in their lifetime. With that in mind we choose to move forward and deal with each challenge as it comes.

I am very confident that Hans will recover from CML, and join Darren and I and countless others as "Survivors". I would like to ask everyone that reads this post to send positive thoughts to Hans and his family as they deal with these challenges.

Next week I will be going to my one month check-up for signs of GVHD at SCCA. At that time they will probably determine if the GVHD is progressing and whether or not we need to treat it with immunosuppressants. Prednizone was mentioned as a drug I may be taking, and I will have an update next week after I find out the next steps. It is good in many ways that I have some GVHD, because it means that my father's bone marrow is prepared to battle anything foreign to it.....not only my body, but any Leukemic cells that may try to come back. It is a fine line treating GVHD, because you dont want to treat it so strongly that your immune system becomes too weak again but you must treat it some to prevent it from getting out of hand and damaging organs, eyes, and other important body parts.

I also had a visit with my oncologist at Puget Sound Cancer Care (so nice being back with them)........and my blood results(white blood cell count, red blood cell count, and platelets) look chemistry panel, Potassium, Magnesium, etc.... all look great. Some other things that have been slightly out of whack are normalizing, and overall things are looking really good. The amount of medicine I have to take has been getting less and less, and I've been feeling good overall for awhile now. My visits to the doctor are approximately every 2-3 weeks now, and I will be having my one year checkup (post transplant)at SCCA in mid-January. At that time they will do a full inspection, and I believe a bone marrow aspiration to see if Im still 100% my donors bone marrow and cancer free. They did do a couple of these post transplant already, and I am at this point "cancer free", and 100% my father's bone marrow! I know I am repeating myself, but it is still very exciting! Next I am looking forward to becoming a contributing citizen again, and returning to work hopefully a couple months from now. Fingers crossed!

Sorry to be so long winded, but yesterday really rekindled many thoughts past and present!



  1. You left out rocking to Queen going north on I-5....

    Just want to add that the drug in question is made by Ariad, and is in phase I trial. I know a lot of people read Tyler's blog, and would benefit from knowing about that there are other options.

    Party on Wayne !

  2. so glad to hear that you are doing better, tyler! fingers crossed that you have good news at your upcoming appts. i don't comment very often, but i do read the blog.

    cancer has touched our family again too. on labor day wknd, my dad was diagnosed with renal cell carcinoma when he went to the ER with weakness and abd. swelling. he is on treatment now, but it will be several weeks before we know if it is working. if it doesn't the prognosis is not good. please keep him in your thoughts prayers, and i will contiunue to do the same with you.

    take care, thinking of you.
    -suz weldon