Look who is famous now...

I accidentally tripped across this video after watching a video about caregiving. My friend Hans is the star, talking about the point when he and Cynthia really felt in control of his CML and decided they were ready to move on with life again.

http://www.patientpower.info/video/a-clinical-trial-and-a-growing-family 

A second video was just posted and shared on Facebook about Hans.  Check out the revised version if you only have time for one:

http://www.patientpower.info/player/national-cml-society/#

Hans is such an inspiration and does lots of work on behalf of e CML Society, but I don't know how much of it he shares with others. I consider myself lucky to count him among my friends.

It's good to see that all of this research into CML drugs IS making a difference!  The drug that Hans is on is the Ariad drug that Tyler took last fall.  While it didn't make the right connections for Tyler, we were both so thankful that it did get Hans on the right path.

Globe trotting

We flew to Houston on Tuesday morning and the flight went better than Tyler thought it would. We were both very thankful that he didn't have much pain in his ears from the cabin pressure. He was worn out from all of the hiking he had to do in the airport (as well as the early alarm clock) and laid low for the rest of Tuesday.

We met with the doctors on Wednesday morning (starting at 7am CST!) and learned that Tyler's platelets were back down at 1. He's waiting to get a transfusion now, but the doctors are pretty much done with us. They offered him the choice of continuing on the ponatanib and Ty chose to continue for now. There really aren't any other good options, so we are kind of stuck with it.

It's a relief to know that Tyler will have a drug to take for at least another month, but the ponatnib really isn't maintaining ENOUGH control over the disease to be a final answer. Our doctor in Seattle thinks that Tyler's CML may be multilingual -- meaning that it communicates along more than one pathway in the DNA. They are researching other pathways, but that research isn't far enough along yet to be of great help. I hope that some new clinical trials open up soon though!


Tyler has gotten progressively worse with each hospitalization and is finding it very difficult to regain his strength after his most recent inpatient stay.

Christmas in Houston

We heard from the Houston folks this week and they have (ever so kindly) invited us to join them in Houston later this month.  I think we'll be crazy flying around the country the week of the Christmas, but it is definitely worth it for Tyler's health.

His immune system has still not recovered, which should have happened by now if the medicine was working.  I am nervous that they will take him off the Ponatnib at this next visit, but we may not know until after the doctors review Tyler's health and his lab results.  Our doctor (Dr. Oehler) is attending a Hematology conference next week, so we hope to hear more from her on exciting new therapies that Tyler can try.

With his current poor health, he is not in great shape for anything else treatment wise.  Our focus is on getting him to eat more and exercise more over the next few weeks so that we can give him as many options as possible.  He continues to get transfusions of platelets every other day, but is getting through those okay.

Home again!

Just a quick note to share that Tyler and I finally go to come home from the hospital today!  He is still dealing with most of the same issues, but the doctors finally said that they weren't doing anything in the hospital that we couldn't do at home.  I am really looking forward to sleeping in my own bed tonight!

He will have follow up visits every other day at SCCA, so they will keep a close eye on him.  We also need to connect with our team down in Houston to see what to do.  Today is Tyler's last dose of ponatnib, so we really need to get back down there and get him another month of medicine.  Because the medicine must be closely controlled through the clinical trial, Tyler has to get down to Houston to get refills.  At this point, I think they might be the only ones that have the trial going right now.

My Fantasy Guy

Tyler showed a definite upswing in energy this evening.  He slept much of the day and felt lousy through the afternoon, but around dinner time he actually felt like a little bit of the congestion was clearing up.  I was certain that he was feeling a little better when he made several Fantasy Football moves after he had dinner.  My darling husband is the king of all things related to statistics, so he is a huge fan of Fantasy Sports.

I don't know if the improvement was due to the extra sleep, some stronger antibiotics, or something else (all of you?!?).  I can only hope that he is now on the right path.

He is scheduled to fly back to Houston next week to wrap up the end of his 2nd month on the Ariad drug.  With his illness, we are uncertain if he will be able to make the trip.  Here's hoping a quick recovery is headed Tyler's way.

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!

Tyler

Ty-Fighters vs. Stormtroopers

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

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'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!

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)!

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.  ;)

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

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!

Sprouting

Tyler is once again sprouting hair!  It's just in time for the weather to start turning colder, so I am happy that he will have the little extra bit of insulation.  It seems strange that he has had facial hair throughout, but the chemo does make him lose the hair on top of his head...

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.

Time is Running Out!

We got a call from Dr Oehler, way after business hours, the other night.  She tells us that Tyler's latest blood test did show signs of circulating blasts.  This means that time is running out for Tasigna, as it is starting to have trouble controlling the leukemia again.  His other counts were okay, but we don't know how long it will be before the leukemic cells start to get out of control again.

He may not be able to wait until the Ariad trial opens up in Houston.  He'll be getting blood counts at least weekly for the next little bit, as Dr Oehler keeps a very close eye on his status.

Test Results In

Tyler got a call from the doctor today and found out that his last blood test results showed an increase in leukemic cells.  While there are no blasts, his PCR went from .01 to 3.0.  (I think, although I got this second hand....)  This is definitely a bad sign, as it indicates that the disease is starting to get out of control again.

The doctor listed Tyler's options for him, although they haven't really changed.  The Ariad trial probably won't open up in Seattle or Portland until October/November, which might be too long to wait.  There might be a spot on the hedgehog trial in October.  In addition, Tyler is still a candidate for a cord blood transplant. 

Of these options, he still prefers the Ariad trial.  Because of the delay in getting things here, we might have to look around the country to see if we can find a spot on the trial somewhere else.

Tyler is, understandably, bummed about the test results.  He has just started to feel good after the shingles outbreak, so the news is coming at a tough time.  So... We are now scouting the country for new trials that Tyler would be eligible for.  He'll have another more in depth blood test in the next week to get more details about what is going on inside him.

Decisions to Make

At our Thursday clinic, Dr Oehler was full of new ideas on how to treat Tyler's disease.  As this was one of the things we have been praying for, I am happy to share the blessing with you.  She recently traveled to Barcelona to speak at the European Hematology Association conference, so she was able to talk about Tyler's condition with leading experts from around the world.

One of the contacts she made was with the folks from Ariad.  It sounds like the next phase of the trial will be up and running in both Portland AND Seattle this fall.  If Tyler's health holds until then, we think he will be a good candidate for the trial at that time.

She also indicated that Pfizer was willing to offer Tyler a spot on a trial that they are sponsoring.  We had some concerns about this path because, while the drug looks like an interesting possibility, Tyler would be the 7th human to take it.  As they are currently testing for toxicity in humans, they are starting at very low doses and working their way up gradually.  With his disease being so nasty when he stops taking his nilotnib, I get nervous about the idea of Tyler stopping that drug for any period of time.  The discussion about this possibility did help me to understand a lot more about how drugs work their way into our pharmacy.  We'll have to talk about that more in a future post.

A final option that we discussed was the possibility of a cord blood transplant.  We had considered a 2nd transplant (with Tyler's mother as donor this time), but have had concerns about whether the disease would again evade the graft.  In addition, they estimated that the chance of success (defined as eradication of the disease) was only 10%.  Since we know that the transplant presents several risks and lifestyle adjustments, we have been weighing that option against our desire for good quality of life.

The doctors are suggesting that a cord blood transplant might have a better chance at success, as they can actually choose blood with mismatched HLA markers and try to get a stronger graft versus host response.  Also, many people have donated the cord blood from their child's birth to the registry and we have access to those within a short window of time.

We have decided not to move on any of these options right now, but are biding our time until the fall.  Hopefully, Tyler can enjoy most of the of summer and have good health until then.

Outperforming Expectations

Last week, at Tyler's clinic visit our doctor said that Tyler is outperforming every expectation she had of him!  He was in the running for a spot on the Ariad trial, but was beat out by one of the other candidates.  Our doctor says that if the Ariad folks could just see Tyler, they wouldn't be so concerned about his recent health challenges being a risk on the trial.  With that in mind, Tyler is going to Portland today with Hans and I have offered to fly him to Massachusetts to meet with the drug company directly.  ;)

Actually, we are pleased to say that he has actually been able to start golfing on short courses again.  He's pretty worn out after all of the walking to and from the cart, but is improving with the ability to exercise again.  He's got good color back in his face and his normal vigor is apparent when you spend time with him.

His blood counts continue to improve and he is beginning to branch out and eat a larger variety foods.  I have even started up with the "honey do" list again.  :)

Thank you for your continued encouragement.  Many people have e-mailed us to celebrate the recent good news and we sincerely appreciate all of your encouragement in both the good times and the dark times.  Our current prayers are targeted at finding a treatment option that Tyler can qualify for that will make a difference in his long term survival!  We are 3 years into our battle and I am amazed to see how much we have been through so far.  We absolutely could not have made it this far without the outstanding support we receive from coworkers, friends, and family.

We hope to see some of you soon!