Yesterday was a very good day for us! We were finally accepted into the Phase II trial in Houston. They were able to accept my liver function test from Seattle, and so we're off and running with a new drug to fight against my cancer. At the Bush International airport I took my first dose yesterday as we continued our whirlwind adventure from Seattle to Houston, and then home a day early re-directed from Houston to Chicago and finally home late last night around midnight. Mandy is a rock-star!! I cant imagine having a better caregiver. Not to take anything away from all my other caregivers which are all fantastic and always willing to be there for me, but she is so positive and so giving of herself. I always feel like we can accomplish anything when we are together!
Alright so you probably noticed my strange title for this entry. My geeky 80's side is coming out here, but I started thinking about the next phase of our battle. I know the tiefighters from Star Wars were actually flown by the stormtroopers, but in my battle the good side stole a Ty Fighter from the troopers and is turning against them. This new drug represents the Ty-Fighters battling against the evil empire (bad white blood cells-stormtroopers). Thus the geeky title.......well anyway it made sense in my head! As I write this the Ty-fighters have been attacking the evil empire for 2 days now and I can already feel the number of stormtroopers dwindling.
My energy is good. My appetite has continued improving since my hospital stay in May, and I have gained all my weight back that I lost that month (10 pounds). My brother gave me a new nickname (Belt Loop), because I had to punch a new hole in my belt a couple months ago. I would like to gain another 10 pounds, but hopefully with mostly muscle weight. I have to remind myself constantly to drink fluids, and it is very important to drink a glass of water with the drug. I have to have a two hour window on each side of taking the drug (4 hours without food), which is causing Mandy some nervous stress as she believes in 6 small meals a day. I think we can figure this out though. Im really excited to have this new ammunition by my side, and look forward to heading the right direction.
Thank you everyone that was able to attend the Light the Night walk, and we were proud to represent a very strong Team Firefly this year!! I will continue to let you all know how things are going and thank you for such Strong support!!
Tyler
Thursday, September 30, 2010
Ty-Fighters vs. Stormtroopers
Tuesday, September 28, 2010
Light the Night 2010
The 2010 Light the Night walk was AMAZING! The weather was the best we've seen in our 4 years of participating with it being mild enough to be in a t-shirt the whole time. We walked in honor of a great many people who have battled blood cancers: Tyler, Hans, Darren, Cathy, Jim, and Rose.
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| Team Firefly 2010 |
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| Team Tent |
I apologize that I didn't get more pictures of individuals, but I think I will have to designate a team photographer at next year's walk. There are too many things to do and too many people to talk to at the walk!
If at first you don't succeed, try, try again
We got the news today that the crew at MD Anderson got permission to take Tyler's blood result from Monday, so (we think) he starts on the Ponatinib TOMORROW! We are so excited about this news and hope that his disease responds to this drug for the long term. Thanks for the many prayers being said on his behalf (and to LeAnn for changing the prayer from ALT going up to going down)!
I guess everything won't be settled in my mind until he actually takes the first dose, but this is a definite answer for us!
Monday, September 27, 2010
Monday's Blood Test
Tyler's ALT was down to 141 today, so staying off the medications over the weekend definitely helped that out. Unfortunately, his WBC climbed from 1.6 (well below the normal range) to 11.77 (just above the upper range of normal) which is a huge sign of why we need to get on a drug soon. Without a tyrosine kinase inhibitor like Tasigna (or Sprycel or Gleevec), the disease starts to get out of control fairly quickly.
Wish us luck in our appeals to Houston this week!
Thursday, September 23, 2010
Home Sweet Home!
It's a true pleasure to be home after several days away!
Just a quick update on Tyler's health... While he didn't meet the trial qualification this week, we plan to try again next week. We just need to get him a little bit lower, so the doctors are holding much of his medication over the weekend. He will get a blood test next week and then we'll talk with Houston again (assuming his ALT gets under 140) and see when they can schedule us back in.
On another front, our team (Team Firefly) is currently leading the Seattle area for fundraising. I'm so excited! We are getting very close to our goal for this year ($10,000) and just need to pull in a few more dollars from our team. I'm still a few hundred dollars short of my personal goal, so I will be hosting another fundraising event just after the walk. It's not too late to join us, if you are free this Saturday! We'll begin gathering at Greenlake about 5-5:30 pm or so. Everyone on the team who raises (or donates to themselves) $100 gets a t-shirt and balloon. You are still welcome to join us, even without hitting that mark, but getting just a few friends or coworkers to donate $10-25 can get you there pretty quickly.
Kicked out of Houston
After we had posted the previous message, we got a call from our PA telling us that the lab had run the wrong test on Tyler's blood this morning. So we headed back upstairs for another blood draw and then decided to have some lunch and chill out in one of the common areas.
When the PA called back again, it was with the news that his ALT had climbed again, this time to 164. He started 2 medications while here and one of them is likely the cause of the climb, so we are holding his medications over the weekend in the hopes that his liver can settle down a bit. We'll test again next week and probably come back again as soon as the numbers are good.
We're flying out as soon as we can today, although a little bit behind schedule. We hope to see as many friends and family as we can at the Light the Night walk on Saturday.
The Waiting Game
Anyone who has dealt with a serious medical issue knows that the majority of the stress is actually caused by the waiting times. The medical issue is a pain for certain, but when you are actively fighting, then you can accept it more.
We are in another waiting period. Tyler gave blood this morning about 9am Texas time and we are just waiting to hear what the results are. I really hope that he continued his downward trend.
I was reading up on ALT last night and learned that a study somewhere asked people to eat fast food twice per day for a month and not exercise. ALT levels apparently climbed within the week and climbed even higher over the month. All of sudden, I am starting to feel a little better about guilt tripping my husband into eating leftovers more often than he ran out for fast food at lunch time. :) Admittedly, this is only one study and seemed to indicate that obesity is a problem (more than fast food specifically) because the fatty deposits on the liver can impede the liver's ability to work efficiently. I just thought it was interesting....
We hope to get results sometime within the next hour and will certainly share what we know when we know it. Thanks for the many prayers headed our way. We hope that TODAY is the day for Tyler to begin on Ponatinib (the new name for the Ariad drug)!
Wednesday, September 22, 2010
Further Away
After wandering the halls of MD Anderson all day today, the afternoon blood test showed that Tyler is even further away from our goal number. He was at 144 this morning, but had risen to 150 at the 2pm blood draw. Hopefully the news is better in the morning...
So close, yet so far away!
We just met with Dr Cortes and his team again. They are ready to proceed with Tyler going on the trial, EXCEPT for his liver function tests. He is just above the acceptable range on his Alanine Aminotransferase (ALT) numbers. He can only be 2.5 times higher than normal, which is 140. On Monday, Tyler was at 163. On Tuesday, he had dropped to 157. Today's test was 144 -- just 5 points away from what we need. The doctors are confident that Tyler can hit the mark, especially with the downward trend he is on. We've asked them to test again this afternoon (scheduled for about 3 hours from now) and hope that he qualifies then. If so, he gets his first dose TODAY!
If not, we will test again in the morning and hope that he hits the mark by then. We were scheduled to fly out tomorrow morning but, if he misses this afternoon's test, we might have to reschedule. We are so close and really want to hit this mark. Everyone who follows our blog closely knows that Tyler has been wanting to get on this trial since last January, but has always been just outside the qualifications for it. Please send a prayer up in his name that the 2pm or morning blood draw will be the one that works.
By the way... the doctors have prescribed a couple of days of steroids for Tyler, to help his liver process whatever junk it is trying to wade through. If you plan to golf with him in the next month, consider yourself warned that he might be playing a little better than normal. I won't be surprised if his drives suddenly start getting him a little closer to the pin. ;)
Tuesday, September 21, 2010
Learning the Ropes
Day 2 went a little bit smoother for us, just because we had some ideas on where to go when. We met Alexa, the PA who works with Dr Cortes and she was really great. We also met with the study nurse and signed the consent form to allow Tyler into the Protocol.
A lot of the day was spent sitting in various waiting rooms, but we were together and got all of the tests done somehow. They have been saying that Tyler's liver function is a little bit abnormal and maybe could keep him from the trial. In fact, they retested his blood today to see if anything had improved. It seems like he is doing well on most other fronts.Because we got done with all of our appointments about 3:30pm, we decided to go out to dinner. We ate at a very tasty Mexican cafe and devoured about a bowl full of guacamole! There is definitely some tasty food around here...
Monday, September 20, 2010
Rookies Again
Today we were reintroduced to the frustrations of learning the ways of a new facility, and dealing with the initial process of getting established at that facility. We had a very long day and it didnt seem we accomplished as much as we had hoped to. Sometimes expectations aren't met, but I think we have definitely crossed the first hurdle of our new learning curve. Dr. Cortes seemed to be very nice and we look forward to our next meeting to hopefully begin the phase II trial. I had a couple blood draws, a bone marrow, and meeting with the doctor. Tomorrow brings a couple more appointments, and we will hopefully have an answer to whether we are in the trial by the end of the week. The facility is very clean and organized even though our flow through the day was a bit disjointed.
The bone marrow was done without sedation, but actually wasnt too bad. They also took part of my bone for biospy. The doctor, upon hearing we were planning on flying home Thursday, seemed to indicate that he hoped to get me started on the trial by the end of this week. He hoped we could stay a couple extra days if need be to get started. If I am accepted into the trial, we will need to be here on the start day, day 15, and day 28. We hope to transfer to Seattle when the trial starts there, and that didn't seem like it would be an issue when we brought it up. The Seattle trial opens up in about 4 weeks possibily. We are a bit tired from the flight and long day, and are excited to have a relaxing evening. We get to sleep in a lil tomorrow, and don't need to be at the hospital until 9ish.
By the way its 88 degrees here, but no sun and its been raining since we got here and its supposed to rain all week. Apparently thats normal for this time of year in Houston so close to the Gulf.
Tyler
Wednesday, September 15, 2010
Packing it On
Tyler has decided that he needs to gain another 30 pounds. I think he wants to get back to his "fighting weight" from his pre-transplant days, but he still looks pretty good to me. What do you think?
Tyler actually tells me that his dad and brother have started to call him "Belt Loop" because he had to add an extra notch in the belt to be able to hold his pants up. He's lean, but not mean!
Thankfully, his appetite is back to normal and he is eating a wide variety of foods again. A lingering side effect from his many challenges with mucositis is that he strongly prefers moist foods. I think his saliva production still isn't back to normal, despite the appetizing cooking being produced in our kitchen. Thankfully, Tyler and Gump have dubbed me the Soup Nazi as a tribute to the many different soups we eat at our house.
Tuesday, September 14, 2010
Changing plans again
Tyler's blood counts have been dropping a bit over the last little bit. On Thursday of last week, his platelet count had dropped to 22K, with the normal range being 150-400K. Because of that low number, the doctors wanted Tyler to come in on Monday and get his blood checked again. Thankfully, his platelets held over the weekend.
His white blood cell count, however, dropped to 2.6 and his neutrophil count dropped to 900. Neutrophils are the kind of white blood cells that are devoted to fighting off infections within your body. We will have to be extra careful over the next few weeks to keep Tyler from being exposed to germs, at least until his neutrophil count begins to climb again.
Just before we had dinner, Dr Oehler called us to ask if Tyler would be willing to go to Houston next week. Even though we thought the SCCA trial for Ariad would be up and running pretty quickly, it appears the trial has just passed the review board in Houston and Dr Cortes is willing to meet with Tyler about joining the trial. We aren't guaranteed a spot, but are hoping that Tyler's marrow, spinal fluid, and liver functions are all looking good enough to let us take part in this trial.
Wish us luck with the interview next week!
Monday, September 13, 2010
Light the Night with Team Firefly
Thanks again for your continued support!
Sunday, September 5, 2010
Sprouting
In any case, I hadn't posted a picture in a long time so I thought I would share his handsome face with friends and family again. :)
We are still enjoying the good news from last week and hope that his blood test results will continue to stay positive. If he can just coast long enough for the Ariad trial to open up (and convince them to take him on), then we have a shot at a new drug.
As Ariad has shown successful results for many patients who have disease that was resistant to the other drugs or just never reached a long term remission. The press release referenced above says:
"A complete hematologic response (CHR) was observed in 85 percent (22 of 26) of chronic phase CML patients evaluable for hematologic response (16 patients entered the study with a baseline CHR). A major hematologic response was observed in five of twelve (42 percent) evaluable patients with accelerated phase, blast phase or Ph+ ALL. "- June 7, 2010 press release on AP24534
I'm hoping that Tyler finally ends up on the good side of those percentages. Too many times we have had doctors say to us "99% of the time, THIS happens" only to find out that Tyler is again in the 1% where it doesn't work. Either they are fudging the numbers or his body delights in misbehaving for doctors. I swear that Tyler is a model patient, following all of his medication schedules and telling the doctors (and nurses) anything they want to know.
Thursday, September 2, 2010
Enjoy Walking?
Not sure if everyone has been invited, but Mandy and I hope that everyone knows they're welcome to join us for the Light The Night walk at Greenlake again this year. Be a member of Team Firefly and walk with us if you so desire. We would love donations, but more than that we would just enjoy having people join us for the walk (donations or not). I believe all the details are on the right side of the website.
Tyler
Traded to Houston?
Hey all! Im hoping this message finds everyone doing well. So as Mandy probably mentioned recently, I had some of the blast cells show up again in my blood results about 3 weeks ago. My doctor was prepared to manage this with an additional chemo pill called Hydroxurea. She was on vacation recently, but with strict instructions to contact her if my blasts were increasing. Apparently the last two tests since the bad one have been fairly normal other than my red blood cell count and platelets decreasing a bit. Also three weeks ago my liver function test was a bit high and concerning.
Well I just got off the phone with Dr. Oehler this morning, and she informed me that she could not find any blasts in the blood from this Monday's blood test, and that my liver function had improved to non-concerning levels. She also told me she had approval for a new drug called Busatinib from the company, but would need to go through FDA approval and SCCA ethics committee approval. That may be about 3 weeks away. At the same time it looks like the race is on between an Ariad trial opening up in Houston and Seattle. The one in Houston will probably open up first, but the one in Seattle may not be too far behind. When we had talked with Dr. Oehler a few weeks back it appeared likely that upon acceptance I may be headed down to Houston for awhile, and then brought back up to Seattle when the trial opens here. At the time it seemed likely there would be about a 6-8 week difference, but now it may be less.
So essentially we are in a holding pattern based on drug approval, trial approval, and of course my blood results going forward. I am encouraged that my Nilotinib has held me up this long, and that I feel relatively okay. Ive been able to get out occassionally for golf and Ive also been able to attend a couple Sounders games. As usual I continue to play what my father calls (little boys games)........keep in mind he participates in these also..........fantasy golf, baseball, football. In Yahoo fantasy golf, there are approximately 120,000 to 150,000 people involved competing in various leagues. There is one section where you can see how you compare to all users, and I recently cracked the top 50 and sat at 26th place overall for all users. I am now back down to 64th with 3 weeks left, so wish me luck. I know I know its just fantasy sports, but how often can you say you were in the top 50 in the world at something?? Okay enough bragging!
The next couple weeks will probably find us steering the ship towards our next course of action with my Leukemia. I continue to remain positive that eventually we will find ourselves headed in the right direction, and maybe just maybe get to a place where it could appear further in the rearview mirror.
Take care everyone and have a great Labor Day!
Tyler
