Friday, October 29, 2010

cautiously optimistic

Hello ladies and gentleman. Im back in Seattle after another short visit down south in Houston. The trip went pretty well overall with the exception of being a bit worn down from flying. My energy these days is down a bit from being anemic and neutropenic.

Dr. Cortes was quite pleased with my initial response to the Ariad drug. The very fast improvement in my blast count was the main reason for excitement along with very few side effects on the medication. My brother went with me this time and over the last month he has been my main travel caregiver to my every other day blood transfusions. He seems to enjoy hanging out with his big brother and I know I have enjoyed hanging out with him. On wednesday Houston actually set a temperature record for that day at 91 degrees. We werre in the hospital all day so it was nice and cool in there. Wednesday completed my first 28 day cycle on Ponatinib, and we did a few more tests than two weeks ago. We did a regular complete blood count, a research blood draw of about 10 tubes of blood, a physical exam, an EKG, vital signs check, and finally a bone marrow aspiration.

The staff down there is very friendly, and my bone marrow nurses Dee and Tommy were amazing. It was as if I was just having a great conversation with them throughout the procedure, and I hardly noticed the lydocaine injection and bone marrow needle going in. Tommy had to take over for Dee as he was the heavy muscle to get through my stubborn bone in my hip. It all went very well with minimal pain yesterday and today. At the end of wednesday we had to hang out to get a platelet transfusion at the Mays clinic across the street at this enormous facility. The two clinics are both part of M.D. Anderson but are separated by a quarter mile long sky bridge. By the time we were done at 8pm (12 hour day at the hospital)....we had missed the last shuttle back to our hotel, but realized that we could actually walk from the Mays clinic from the parking garage only about a 3 minute walk. It was good to get a little exercise after sitting around all day.

As my good friend Hans has mentioned many times to me, its good to remain cautiosly optimistic about good results....thank you Hans for the reminder! My initial response with my blast count went from 79% on day 1 to 1% on day has now bounced back to 8% over my last 3 blood draws and actually today it went back down a little to 6%. Its easy to get very excited when things go well, but as Ive been reminded too many times things can turn the other way quickly.

The results of my bone marrow will start coming in early next least the preliminary results. These should be a better indicator of how things are really going with the new medication and Im very excited to see how they look. So Im now into cycle 2.....early days, and overall am feeling pretty well despite being low on my counts and needing transfusions constantly. My platelet production isnt working right now so Ive been getting those at least every other day. Also now my red blood cell count has been dropping making me anemic and needing transfusions twice for those. My overall white blood cell count has now dipped below 1000 and my infection fighting neutrophils have bottomed out at around 30 (neutropenic is below 500)

I will be celebrating another birthday on sunday and with my amazing wife by my side Im feeling younger all the time. I know a lot of people are going through some tough times right now with their own issues, but I would like to send out a special best wishes for Carleen with her father and of course Hans and his family.

Go Sounders!

This one is for you Lammy........power to the butt chins!


Tuesday, October 19, 2010

Ty-Fighters Day 22

So far the Ty-fighters seem to be working really well. I've been taking the drug for 3 weeks now and, as expected, my white blood cell count and neutrophils have dropped very low. Being neutropenic gives me less energy, and puts me in a much more precarious position for getting infections, fevers, etc.... So far I have not been sick, but I'm being very careful and doing lots of hand washing, drinking lots of fluids, sleeping, and eating well. I have needed to go to SCCA every other day for blood draws and transfusions. Most of the transfusions have been to give me platelets, but I have also needed some red blood cells a couple times. The reason I believe that the drug is working is because on Day 1 when I started the ponatnib, my blast % was at 79%.....meaning that 79% of the cells they looked at in my blood sample showed disease. Every blood draw since day 1 has shown the blast % to decrease, with my most recent blood draw showing that percentage down to 10. That was on day 20.

Clearly the amount of Ty-fighters have decreased, but the Stormtroopers have decreased far more significantly. Actually, my day 20 blood draw showed a slight increase in white blood cell count and my neutrophils doubled from 30 to 60 which may be a good sign. Any sign of an increase in neutrophils is good and I will know more tomorrow. So now it's off to recruit more Ty-fighters and get some good sleep.

Clear eyes.........Full hearts......Can't Lose!


Monday, October 11, 2010

Ups and Downs

Last week, Tyler had some serious ups and downs.  On Monday night, he woke up about midnight and found, after blowing his nose, that the blood wouldn't stop.  Since his platelets had been low on Friday, we were certain that a low platelet count was the reason that he couldn't clot.  We went to the ER and, after about 4 hours, Tyler got a bag of platelets and finally the bleeding stopped.

The doctors really wanted to observe him for a few hours, to make sure that there were no lingering effects from the blood loss, so he got admitted for the day.  Thankfully, he was able to come home mid afternoon, after another bag of platelets.

He went to SCCA on Wednesday to check his blood counts again and learned that he needed some red  blood cells, so he got more transfusions on Wednesday.  And again on Thursday and Friday...

We were nervous over the weekend, but he made it through safely.  We also got to enjoy the comedy of Jim Gaffigan on Saturday evening, which was a surprise treat for Tyler. (Hot Pockets.....)

He heads to Houston tomorrow for his Day 15 appointment. I am predicting that Tyler will spend about an hour in the waiting room, a half hour with the doctor, and 3 days in Houston overall.  I'm really glad that most of our treatment has been in Seattle!

Monday, October 4, 2010

Day 6

Well, its day 6 or for most everyone else Monday. So far I am feeling pretty good with the therapy. I have had some early morning mild headaches, and some mild muscle pain which was expected. I will be getting my bloodwork looked at this week at SCCA, and they will forward the results to Houston. Next week I will be headed back down to Houston for a day 15 check-up. They will do a physical, bloodwork, and a couple other tests. Day 22 will be back in Seattle for bloodwork, and then Day 28 back in Houston. They will be doing another Bone Marrow Aspiration at that time. That appointment will coincide with Day 1/Cycle 2........and this will repeat every 28 days.

At this time we are hoping to be able to transition to Seattle full time once the trial starts locally. Hopefully my doctors can convince the drug company to allow this. It seems to make sense, but we're unsure of what the rules will allow right now. My energy has been pretty good, my appetite has been great and I'm looking forward to seeing how the results of taking this new drug will play out.

I cant thank all of you enough, that have supported us so loyally all this time! Its very uplifting to know that so many people are there for us! We feel blessed to have such an amazing army of supporters, family, friends, and fellow survivors/caregivers helping us fight this disease every single day!

I will do my honest best to keep all of you updated as much as possible, but also I want you to know that most of the time I want to live my life as normally as possible. Sometimes that means there may be some stretches of silence. I also want to let you all know that if any of you need someone to talk to about issues you may be having dealing with cancer as a survivor, caregiver, or friend of someone you know..........please dont hesitate to reach out to me to talk about it. I wont have all the answers, but I may have some helpful words.

Tyler......(battling CML for 3 years and 8 months now).