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

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.  ;)

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.

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!

Breaking through the Glass Ceiling

Tyler's blood counts on Saturday morning proved that he has broken through his glass ceiling.  His total white blood cell count (WBC) was 1.0 and over half of those were neutrophils (ANC)!  With a ANC of more than 500, Tyler is less at risk for major infections.  He gets to drop two of his antibiotics, so he has fewer pills to take.

There isn't too much change other than that, but we are celebrating by taking a 3 day weekend!

Climbing the Hill

Great news from today's doctor appointment!  Tyler's neutrophil count is up to 420!  Once he gets over 500 neutrophils, he will get to cut down on some medications and eliminate some of his current activity restrictions.

He is feeling pretty good and starting to add more foods into his diet.  His doctor says that Tyler can try to start getting some exercise, so he'll be working on that too.

Nothing if not Confused

This morning our nurses came in to introduce themselves and we learned that Tyler would have an ICU nurse, her ICU nurse trainer, and a dialysis nurse. The dialysis nurse told us that they had Tyler scheduled for 8 hours of dialysis today (up from the 4 hours we were told yesterday). I asked what his phosphorus number was today. Apparently Tyler was at 9 yesterday and the normal range is more like 3-4 or so. But today he was at 8.3 with his 6am lab draw.

Despite that, they had planned to continue with the dialysis this morning, although at a reduced rate because of his low blood pressure (which accounted for the longer time involved). But his pressure is improved and the doctors thought that they might be able to bump up the rate a little bit if he stayed where he was.

However, just a few minutes ago, our nurse popped her head in to say that they were delaying the dialysis until after Ty's noon lab results are in. It sounds like the doctors hadn't seen the 6am result when they talked to us. Since he dropped from 9 to 8.3 between midnight and 6am, they want to see what his kidneys can do on their own in the next few hours.

Tyler is doing his part to clear out all of that cell waste, so hopefully it is enough! I'm glad we are waiting for now. I don't want him to have to do more blood filtering out of that giant tube in his neck!

A Higher Level of Service

The staff at UWMC finally made the decision to move Tyler into the ICU unit. While he is fairly stable right now, his blood pressure is very low and he is running a fever. In order to provide more observation and a higher level of care, they have moved us into an ICU room.

They also want to run the dialysis process for him at least once tomorrow to help his body clear out the excess phosphorus that has built up from the cells dying off. His kidneys have not failed, but they are certainly impaired right now. We are hopeful that his numbers will have improved in tomorrow morning's labs and we can prove to them that his body can do the cleaning on its own. They assured us that this isn't a permanent diagnosis at this point, just a way to help his kidneys through a rough patch. I guess it is a bit like hiring a temp kidney to take on the extra workload.

His latest white blood cell count was 4, so he's definitely dropped way down in that area. We expect to see further drops with the next couple of lab tests. So far no sign of nausea from the chemo, but it is only a matter of time. Last time if was a salad that did him in and he couldn't eat it for months. I think I'll steer him away from salads for now....

Improving

Tyler made it through the night with flying colors. His white blood cell count is down to 18 (from 104 yesterday morning) after taking hydrea and getting the pheresis last night. We haven't seen his blast count yet from the 6am labs, but I'm hoping that it might be down too.

They ran the pheresis machine from about 1-4 am, so we were pretty tuckered out after that. We'll likely try to sleep as much as we can today to make up for it. It's always tough to sleep in the hospital, with frequent interruptions for tests and observations, but they know we had a rough night so will hopefully do what they can to group things together today.

He's still bleeding from the insertion of the neck catheter, but it does look like it has slowed a little bit. Hopefully they feel safe in giving Tyler some platelets today to encourage it to clot.

His kidneys have held up so far, although I think they are more worried about how they will behave with the chemo killing everything off.

They started the chemo this morning. He's getting fludarabine, cytarabine, and a third drug we haven't seen before. I can't find the name of it right now...

He feels and looks much better this morning with a little bit more energy and alertness, so that is reassuring too. The doctor told me yesterday that Tyler is an amazingly tough guy. He always looks much better than he should when they get these shocking test results. I don't think he intentionally tries to hide anything, just that his body doesn't feel as sick as some people would in these situations. I suspect it is due to the all of the good clean living he's had -- working hard and playing soccer led to a strong, strong body. In fact, I always laugh when we read the notes from SCCA after we have a big visit with them. They describe Tyler as a "well formed adult male". I keep warning him about getting a big head from the fact that all of the doctors at SCCA think he's hot!

Thanks for the many prayers and the encouragement to get through yesterday's day of rough news and last night's treatments. I hope that we can continue to improve today and get out of the woods soon. We really don't want to move to the ICU unit if we can avoid it (although we have nothing against the 8th floor nurses if any of them are checking this). :)

Prayers urgently needed

At our appointment this morning, the blood test showed that Tyler's blast count had climbed really high. His white blood cell count was 104.73, when normal is supposed to be 4-10. Of the white blood cells found, over 90% of them were blasts.

They are immediately initiating several different chemo attacks to kill off the blasts in his blood, but there is a risk that he might have to go into the ICU here if his body can't handle the high cell turnover.

They are also cautioning us about the possibility of the blasts sticking in his lungs and causing breathing problems (which they might already be doing based on his shortness of breath) or blasts sticking in his brain and causing difficulty in processing thoughts (which we haven't seen yet).

Please pray that Tyler responds quickly to the treatment, but doesn't get moved to the ICU because of complications.

I will try to update more when we see how he is responding.

Mandy

Quick Improvements

We were pleased to hear, after Tyler's Saturday blood draw, that his blasts are already down to 50% less than what they were on Friday.  We think this is probably due to changing his medicine from Interferon to Tasigna on Thursday night.

Let's hope this is a sign of things to come!!!

Stubborn Little Suckers!

Tyler had just begun his first day at his old job, in preparation to return to work in January, when he got a call from Dr McGee.  The doctor told Tyler that he needed to come in for an appointment the following day to talk about a recent lab test.  Tyler called back to their office a few times trying to get more information, but no one could tell him anything futher.

Let me just step aside from my story for a minute to share a little fact that you could probably figure out.  It was extremely difficult to wait for 24 hours, wondering what the new information would be?  It ruined Tyler's first day with his work crew and our evening, as we worried about what exactly the bad news would be.  If you are a doctor or know a doctor, please tell them that bad news over the phone is infinitely better than bad news after a 24 hour wait.

After sharing our thoughts on that subject with our own doctor, we discovered that he was concerned about Tyler's latest BCR-ABL test results.  They showed a tiny bit of leukemia cells floating around in Tyler's system.  We had actually seen a test result from October that showed the same amount, but Dr McGee had indicated that a subsequent test showed no signs of leukemia so the October test was probably a fluke.

The amount of Leukemia shown as a ratio on this test was .02, which isn't uncommon for post transplant patients. In fact this ratio is in a range that shows that the chance of relapse is very unlikely. We want the ratio to be 0 however (negative), so we have discussed the possibility of another procedure. The goal is 100% remission.  On December 3rd at Puget Sound Cancer Care the test came back 0 (neg), and the same test done again on December 6th at SCCA came back as .02 again. The range for "very unlikely to relapse" is 0-0.10.

Dr McGee is referring Tyler back to SCCA for testing and possible treatment.  Most likely, Tyler would get a Donor Lymphomcyte Infusion.  This is like a booster shot of white blood cells from his father, that should stimulate the marrow to attack the leukemia cells that are floating around in there.  The goal of this treatment is to get Tyler back into full remission, but would likely cause a recurrence and possibly an increase in Tyler's Graft vs Host (GVHD) symptoms, but would also increase the Graft vs. Leukemia effect (beneficial). I know this all sounds very complicated, but we are working through this and finding out about the procedure.

Tyler would NOT have to endure the chemotherapy and radiation again with this treatment though.  It would be very similar to getting a blood transfusion, although his Dad's blood would be collected and boiled down to just the white blood cell part.

We have not yet committed to this treatment, but expect to learn more about it during Tyler's one year follow up appointment in a month.

Test Results and Health Update

Tyler and I realized that we haven't posted any of his recent test results. They are looking really good, so we have just been filing them away. But, in case you are a numbers geek like we are, here are the results from June 9th.

WBC: 5.7 (normal 4.8-10.8)
HCT: 32.2 (normal 40-50)
PLT: 103 (normal 150-400)

Dr. McGee has been very pleased with Tyler's continued boringness, so we hope to continue that. We wonder about some redness and dryness that he has been experiencing in his eyes, but this seems to be very mild (if it is indeed GVHD). Hopefully he does not experience any further signs and does not have to slow down his taper of the tacrolimus (immunosuppressant).

On the upside, Tyler is feeling GOOD! He's slowly resuming normal activities and I am so very thankful to see him thriving again. Thanks for continuing to walk this journey with us.

Memorial Day Weekend

As a sign of how much better he feels, Tyler is on a small road trip this weekend. He headed over the Sequim to spend the long weekend (with an extra day on each side) with his Mom and her husband, and just get away from home for a few days. I wasn't able to join them, as I had to work both Friday and Tuesday, but will take advantage of the opportunity to go visit my sister and baby niece.

Although it has been a few weeks since we last posted, life has been moving along well for both of us. I've been working full time, playing a little bit of soccer, and enjoying the sight of a happy husband. Tyler has been eating nonstop, knocking a few golf balls around, and getting stronger with increased activity and physical therapy.

Appointments with Dr. McGee have been good, as Tyler's blood counts continue to stay in normal ranges. Tyler is headed to the doctor about once a week initially, but will be dropping down after a month or so of good blood tests.

Tyler still is not showing signs of GVHD, and is continuing to decrease the amount of Tacrolimus that he takes each day. He's currently at 3.5mg per day, which is down from a regular dose of 5.0mg per day back in April. He actually was much higher when he was first released from his final hospital stay (in January), but the level of Tacrolimus in his blood was tested twice a week for the first 100 days and his dosing adjusted accordingly. I'm hopeful that he will continue to be strong and healthy as the drug is lowered further.

He is also continuing to take Tasigna, the leukemia attacker that he was on before the transplant. They estimate that Tyler will continue on this drug for at least 1 year to reduce the risk of a relapse. At the 1 year mark, they will let us know about continuing with the Tasigna or not. I kind of hope that he gets to stop that drug as well, but also don't want to risk a recurrence of the leukemia.

If things continue to go well, then Tyler may be able to resume his regular activities gradually between the 6 month to 1 year mark. We had purchased season tickets to the Sounders last spring, and Tyler has been unable to attend any of the games because of the risk of infection in large crowds and the fact that we stand for the entire game in most of the stadium. He's currently in training for the standing thing, but we are going to evaluate whether or not he can go to the June soccer games.

No News is Good News

Sorry for my slowness in posting, but we've had lots to keep up with recently.

First, some good news that is completely unrelated to CML... My sister, Bonnie, gave birth to a beautiful little girl named Rachel. Bonnie and Joe (her husband) are going to be outstanding parents, so I am excited to see them blessed with a cherished daughter.

Secondly, I'm pleased to report that Tyler's counts have improved. His potassium is back down into normal ranges (4.6 with a normal range of 3.7-5.0), so we are allowed to have mid range potassium foods again. When we got the first list of High, Medium, and Low Potassium food choices, the only protein options on the low potassium list were eggs and pecans. That doesn't really give us many options for healthy or interesting meals.

They have since expanded the list a little bit and, with the addition of the medium postassium proteins, I'm able to start cooking again. I must admit that this probably makes me more happy than Tyler, as I'm a little more passionate about food than he is.

Test Results from Monday:

WBC: 5.68 (3.7-10.0)
HCT: 28% (38-50)
PLT: 74 (150-400)

Bonus Visits -- Not On Our List

We have been scheduled for a few bonus doctor's visits this weekend, as they don't really like some of Tyler's counts right now. His potassium has climbed again, as well as his creatinine. These are both signs that his kidneys are not able to eliminate all of the waste from his body. They are restricting his diet again and have sent us an IV bag to infuse each day for the next several days.

On the side of fun, we watched the Seattle Sounders soccer team defeat Toronto after getting home from the lab draw today. It's fun to have a Seattle team to cheer for, especially in the sport that we love so much! With only a month left in the post translant period at SCCA, I am starting to dream of life after cancer. Not that it will ever disappear from our lives entirely, but we hope that it once again fades into the background of our lives.

At the 100 day mark, provided Tyler has no major complications, we will be referred back to Dr. McGee (our original oncologist). We love the staff there and have missed the consistency of our care with them. Additional milestone will occur at 6 months and 12 months, but I am just trying to focus on getting to the 100 day point for now.

We hope to report that Tyler is feeling better soon and ask that any prayers being said on his behalf would include his overworked kidneys.

Day 58 - Slow Down and Look Around You

Thursday was another lab and clinic day for us. We had realized the day before the Tyler would get flushed when we delivered his IV of magnesium. When we mentioned it to the nurse, she realized that we were pumping it in to fast. When we got home, I was finally able to decipher the label that said how fast to administer the magnesium, but it certainly wasn't clearly labeled for a layperson. Instead of 100 ml/hr, we not have the pump set at 60 ml/hr.

Test results:

WBC: 6.75
HCT: 31
ANC: 4.72
PLT: 80

Next week, Tyler has his next-to-last lumbar puncture, so we are hoping for a repeat of his last poke. I'd say the odds are against us, but one can always dream!

Giving Good Blood

I gave blood at my office's blood drive today. My blood just about stopped several times today, but eventually I made it to the bare minimum for a donation. I felt kind of bad for my blood tech though, as she was really working to get those last few drops. She did joke that I must have an abundance of platelets, as I started clotting immediately after she removed the needle. I was the 2nd person to start donating this morning and the 7th one to finish. I envy those of you with nice big veins!

I encourage you to find a blood drive in your area and donate your own pint of blood. While it isn't my favorite experience (this isn't usual from all of the people I've talked to), it is something concrete that I can do to help Tyler and others like him.

Speaking of my handsome husband... Tyler was feeling great after Monday's lab draw. His counts looked fantastic and he felt good. In fact, he felt SO good that he talked his dad into golfing in the rain. Or, as Scott shared with me, Tyler kept trying to convince him that the rain was letting up.

WBC: 7.23 (normal 4.3-10.0)
HCT: 31% (normal 38-50)
PLT: 97 (normal 150-400)
ANC: 5.13 (normal 1.80-7.00)
Potassium: 4.5 (normal 3.7-5.2)

He's been on IV Magnesium or Magnesium supplements in pill form for several weeks now, but that number was in the low range of normal as well.

He's able to eat more at each meal than he was just a month ago, so he's building strength again. The first time that Scott, Gump, and Tyler went golfing (post transplant), Tyler had to rest often along the way and was wiped out for the rest of the day. This time, he didn't have to sit down and rest during the outing and still felt good that night.

On Sunday, he had his first driving experience in about 6 months as he drove us to dinner that night. Although it felt strange to him on the way to the restaurant, I think he settled back to normal by the time we headed home.