Pregnant Old Man

I felt great for a week!! This was because for a few weeks I wasn't on any drugs at all. So after they worked their way out of my system, I did feel pretty normal for about a week. Then, unfortunately/fortunately, my friends from UPS delivered a new drug right to my door! Luckily this drug is not $4,500 per month like Gleevec was, instead it is $7,600 per month! Its called Tasigna (Nilotinib) and it is 50 times more agressive than Gleevec. Just two days before I went to see Dr. IKnowEverythingAboutCML over at the Moffitt Cancer Center, he was up at a yearly conference mingling with other players in the CML world. He put me on this newer drug based on some research just revealed at that conference, which proves that it works better on high risk CML patients like myself. I have been on it for a week now and feel like a pregnant, old man. I feel like I have perma shin splints/growing pains in all of my bones from the waist down and sometimes in my arms and scull. Random everday smells make me sick, I have serious hot flashes, headaches, lots of muscle pain, and at times I get this odd sensations where I can feel the blood pumping through my body. I just hope I can get to feeling better soon so I can get back to work! I love to get things done and pull off a sweet tile masterpeice! There are moments of feeling descent (like right now) and I use distraction to keep my mind off of it. Pray this drug will be the miracle we are looking for! Here's the study.

What is CML?
Many have asked what CML is exaclty and so I shall now lay before you "B Russ's definitive guide to CML". First, let us take a look at the development of blood as it happens in our bodies. Our bone marrow produces stem cells all the time. These stem cells divide, grow, and develop into the various components that make up our blood. The stems cells first turn into either a Myeloid or Lymphoid stem cell. We will focus on the Myeloid side since I have Chronic Myeloid Leukemia (still so strange and surreal to think that I have that). Stop a review the image for a moment before reading on.

Now, somewhere along the line, for reasons that remain a mystery, one of these stem cells went retarded as I put it (but to be correct I want you all to know that I have great love for the mentally challenged). By retarded, I mean that the DNA inside the cell mutated (thus making me one of the X-Men). The mutation is a distinctive translocation between Chromosomes 9 and 22 as illustrated to the left. This translocation produces the Philadelphia (Ph) Chromosome which in turn produces a protein called brc-abl. The Bcr-Abl protein acts like a switch that keeps my white-blood cell production in the “on” position. It tells the retarded cells to multiply like rabbits! So my bone marrow keeps making damaged white blood cells that, over time, crowd out healthy red blood cells and platelets, and would eventually make me dead if not stopped. Its me or them.

Enter Tasigna! Tasigna basically plugs the receptor site on the retarded white blood cells where the brc-abl protein would normally dock. When the brc-abl protein can't connect with the cell, the cell never gets the go ahead to divide and replicate. It eventually dies and the good ones take my body back. There you have it!

Bone Marrow Transplant
I have had a lot of questions about bone marrow transplants (BMT). A BMT is the only known "cure" for CML but there is a fair chance the trasplant would kill me. They say I am a good candidate and I would most likely do really well with one. But why try something that could kill me when managing the disease with these new drugs would allow me to eventually lead a long healthy life with little to no risk of killing me in the process? So right now there are no plans for a BMT. However, the option will always be there, but right now we are planning and hoping we never have to ride that pony. After a few years on Tasigna, give or take, there will be no evidence of cancer in my body but they have found that it will almost always reappear if the medication is stopped. So, technically I will always have CML but it will be controlled.

Some Good News
I just got back from the doctor and they stuck needles into me, a female nurse saw my butt again, I was shirtless, and got a little EKG action going on, etc. My blood looked pretty normal though and that is good cuz this is the first blood check since starting Tasigna. My blood counts being normal and me feeling like crap means it is probably working the way it aught to! I had to get the EKG because Tasigna has caused a heart condition called Prolonged QT in a minute number of people. Prolonged QT causes your heart to stop suddenly and CPR doesn't restart it. My awesome little nephew Luke actually died from it when he was 2 years old. Amanda and I have naturally been a little concerned about the possibility of me having the same condition but the EKG showed no signs of the condition and we are grateful!

Spread The Word
I have run into a few people lately who didn't know anything about me having cancer and a ton who knew but weren't aware of this blog. Please take a moment & put a link to this blog out on your facebook or tweet or whatever you do so anyone interested can check in if they want to know whats going on.

Thank You's Are In Disorder
It looks like we are finally on the way to recovery. I say we because everyone is loved by somebody, and illness affects all those who have any love for the person afflicted. There is still a long road to travel but the number of ways cancer has been a blessing to our family are too great to number allready, and we have yet to see what the future holds as hindsight reveals even more!

The love, help, prayers, and giving that have been poured upon us over the past few months is nothing short of humbly overwhelming! We have been doing our best to keep track of all that has been done for us and by whom it was done. We want to send out thank you's but wonder if we will ever be able to get to everyone! We know those who have donated or given in so many other ways didn't do it for praise or a thank you. But we, nonetheless, feel to express gratitude to at least the same degree as you felt to give. Thank you all from the bottom, top, right, left, and center of our hearts!

Love,
Bryan, Amanda, Makayla, Gavyn, Bryton, & Cayd

PS - I'll post an update in a couple of weeks.