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In talking with Dr M this morning, we continued to learn more about Tyler's status. The most difficult thing for us to hear, I think, is that his leukemia has progressed to the next stage. The disease is trying to run rampant inside his marrow, so new drugs are needed to fight this resurgence.

We also talked to Dr M about the possibility of a transplant. He clarified that he was anticipating that Tyler would most likely get a Stem Cell transplant, not a bone marrow transplant as I had originally anticipated. Some of the reading today indicated that a Stem Cell transplant is considered to be a cure for CML. It will be interesting to keep reading about the process and learn more.

I have to admit that we are a little more scared today than we were before and will have to change how we plan for our upcoming months. We don't know too much yet, but I'll be reading more over the next few weeks.

Nothing is certain yet, but the doctor says that he will need to keep Ty in the hospital until he is in stable condition, which may be a few more days yet. I'm hoping that he will be able to come home before Christmas, but if not we are taking Christmas to him in the hospital.

Merry Christmas!

A Good Week, but now some concerns...

We had a very good honeymoon and will fill you in more on that front in a later message, but for now I thought it more important to get the news out about Tyler's health. On Monday, December 17th, we had an appointment with Dr. M to get the results of the Bone Marrow extraction from the 12/4 and the Gleevec level test that Novartis (the manufacturer) was offering from Dec 7th.

After being off Gleevec for a full week, we were hoping that Tyler's platelet count had climbed back up into a more comfortable range. Unfortunately, Monday's test showed that he had actually dropped to 21 for his platelets and his White Blood Cell count had climbed to 52000. This is a bad sign and, an in combination with the Gleevec Level in his blood, indicates that his disease is no longer responding to his chemotherapy drug.

The doctor also discovered that Tyler had a temperature of 101-102 and an ear infection and recommended that he check into the hospital that night to get both of those things under control with intravenous antibiotics.

He is switching Tyler's medicine to Sprycel (the next generation of drug after Gleevec) as soon as the hospital pharmacy can get some and we'll hope for a positive response to that. They do say that Tyler will most likely need a transplant now to fight his disease. We hope to learn more over the next few days.

He doesn't feel really sick, so he is resting fairly comfortably in a private room. I think his biggest challenge will be boredom, so I'm taking a stack of movies to him tonight. Frequent score updates will be helpful for any NFL games being played this week (although I'm hoping he will be out in time to watch them).

Thank you for the prayers being said on his behalf and for the calls and e-mails sharing love and support. He is currently at Steven's Hospital, in Edmonds, in Room 802 if you want to call or come by. Visiting hours are 2pm - 7pm and we expect to be at the hospital for a few days this week, if you decide you want to visit.

Thanks!

Mandy

Wow! We've had more than our share of trials recently. It all began on Halloween (Tyler's birthday) and we've been battling different issues since then.

Probably one of the most challenging is the fact that our mini has been totaled (from a minor collision) due to some damage of the engine block. Tyler was hit by a lady entering a road from a parking lot on Halloween evening. He was completely stopped and she just never saw him there. He's been fighting with the insurance company this week to get fair compensation from them for our vehicle.

So... We are in the market for a vehicle. Ideally, it will be something that is reliable and handles well in the snow. Other than that, we are somewhat flexible.

The other challenge that we are currently facing is a slight blip in Tyler's health. We went in to Dr. M's office on Tuesday for a bone marrow aspiration. This was pretty much a 3 month follow up from his last bone marrow test to see how his body has been responding to the Gleevec. His blood test that day revealed a low platelet count, which is one of the danger signs for Ty. He's been hovering in the upper 100's (175-190 range) for several months, but this test showed him down at 106. The normal range is 150-400 for platelets.

I asked the doctor if we needed to be worried about anything for our upcoming trip and he immediately got worried. We have decided that the mere thought of a week away with me stresses Tyler out completely, so his body's response is just his way of trying to avoid a honeymoon.**

Thankfully the doctor got the hint that we were going on our honeymoon regardless and came up with some alternate strategies. Tyler went in for another blood test this morning to see if Tuesday's test was in error. Unfortunately, today's test showed that his platelets dropped down to 86 and his white blood cell count had climbed from 7400 to 12400. Target range for his white blood cells is 4800-10800.

The doctor has taken him off Gleevec for the duration of our trip, but we DO get to head out of town. We could use some prayers that his platelet count climbs back up and he responds well to the Gleevec when he goes back on next week. We don't tell you this to worry you while we are out of town and unavailable; just a message to keep all of you up to date on our crazy life.

On the upside, we are flying to Miami TOMORROW to begin our long awaited honeymoon. We'll be cruising on the Carnival Valor to Belize, Cozumel, Grand Cayman Island, and Honduras. It's going to be so very great for us to get away and spend some quality time together over the next week. We'll take a bunch of pictures of the beautiful places we see and share some of them online when we return.

Much love to you!

Mandy

**Tyler's theory is that the stress of talking to Farmer's Insurance Agents has caused the unusual spike in his WBC and drop in platelets. Also, the bone marrow extraction involves a needle penetrating his sternum, so he thinks that wound may cause some of the white blood cell spikes.

Back from the Land of Margaritas

We enjoyed a warm weekend in Puerto Vallarta with our soccer team this past weekend. It was so great to get out of the rain and the cold and get a little bit of sunshine! Our team won the Coed Division of the Vallarta Classic, so we'll also have a our names on a trophy to commemorate the success.

This was our fourth year (out of the last 5) and it was great to get back down to the BuenaVentura with some of our favorite people! The pool bar was as much fun as ever, although I think we played more cards there than ever before. Our hotel was under construction, so some of our regular areas weren't available.

I hope to post some PG rated photos in the next week or two, but I don't know that I took that many photos on our camera this year.

So.. We've had some blog confusion on our end. Tyler wrote up a great (I assume) post about getting the test results, but it didn't get posted for all to read. Sorry for making you wait. Thankfully, my sister called and reminded me that I was letting you all down. I guess Tyler and I need to come up with something more interesting to talk about, so we aren't always waiting for doctor's visits or test results. Perhaps we could post our fantasy results each week! ;)

Anyways, the doctor's visit for the bone marrow results went okay. Dr M said that Ty is down to only 1 in 50 cells with the Philadelphia chromosome, which is a great improvement.

On the down side, the doctor was disappointed in those results. He was hoping we would be at complete remission by this point. He gave Tyler the option of increasing his daily dosage to 800mg of Gleevec or continuing at 600mg and retresting again in a few months. The standard dosage is actually 400mg, but our doctor said that patients who are able to tolerate a 600mg dosage achieve better long term results, so he started Tyler off there. Ty has handled that dosage with only a few symptoms, so it was a good decision.

There is concern, however, that if we increase is dosage to 800mg, that he might experience more side effects from the drug. Tyler opted to stay with the 600mg dosage, to make sure that he is able to continue working full time unhampered by side effects.

I think we were both a little unsettled after the doctor's appointment, but pleased that Tyler seems to be making progress still. Our next visit is right before our vacation to Mexico, so hopefully he gets good results from that. I'll be surprised if the doctor continues to see us every month. The recent blood tests have been pretty steady, so unless they are using the more sensitive tests each month, there wouldn't be too much to test on.

Thanks for your continued support, the prayers, and the friendship!

Mandy

The Waiting Game

On September 12th, Tyler had a bone marrow extraction to provide samples for testing at the next level of remission. The bone marrow extraction can be quite painful despite the local anesthetics used. Basically the doctor sticks a needle into Ty's sternum and exerts pressure to suck some of the bone marrow back into a waiting vacuum tube.

Tyler did great in terms of facing the expected pain and actually said that this time was easier than the time they took his marrow in the hospital. The doctor explained to us that this is normal for many leukemia patients. At diagnosis, their marrow is so packed with extra white blood cells that it doesn't release as easily as healthy marrow should. The fact that it was easier this time is an indication that Tyler's health has improved.

Unfortunately, we are now playing the waiting game for the results. We have another appointment scheduled for October 8th to get the results from the bone marrow testing. In the meantime, we wait...

New Drugs on the Horizon

More about Gleevec
This comes from a mailing list I belong to, but is interesting in terms of the drugs to watch for over the next decade:
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It's hard to believe how far we've come in CML treatment in just 10 years. To think that 10 years ago, we had little to hope for other than the horrors of Interferon but now the number of drugs that are being developed to treat CML is at a point where it's actually hard to keep up with all the information.

In case any of you are interested in learning more about the drugs that are being investigated. Here is a list of a few that I was able to find.

1) Sprycel. This drug is now approved in many countries and is also known as Dasatinib or "the BMS drug". It's a dual bcr-abl and Src inhibitor and many of our list members are already taking it.

2) Tasigna. This is widely available in trials around the world and is also known as AMN 107 or Nilotinib. It's a bcr-abl inhibitor much like Gleevec but more potent and again, a number of our list members are already taking it.

3) Bosutinib. This is another drug that is being used in trials around the world and is also known as SKI 606. It's a dual bcr-abl and src inhibitor.

4) INNO-406. This is a Bcr-Abl and Lyn-kinase inhibitor that is available at some of the bigger trial centers.

5) MK-0457. This is a drug that is being used to treat people with the dreaded T315I mutation. It's an aurora kinase inhibitor.

6) Homoharringtonine or HHT is actually an older drug that is also being used in various trials for the T315I mutation.

7) KW-2449 is an aurora kinase inhibitor that I don't know much about other than it's being trialed in a few of the bigger centers.

8) Lonafarnib is a farnesyl transferase inhibitor being used in some trial centers.

9) GX15-07MS is a drug that is being used in some centers for blast phase CML.

10) ON012380 is a drug that is supposed to be 10 times more potent than Gleevec and is being trialled in some Gleevec resistant patients.

I'm sure there are even more drugs out there in the pipe line that I've forgotten to mention but as you can see, we're living in very exciting times.

Here's a great website that lists some of the drug trials that are being done at MD Anderson if anyone wants to check them out further: http://tinyurl.com/2pnprg

And this site gives a brief summary of the Abl and Src inhibitors. http://www.medscape.com/viewarticle/559294_8

Hardworking Staff and Sunday Updates

Tyler got a call today from his oncology nurse. She says the doctor responded to Ty's test results via e-mail at 1am on Sunday -- that's dedication!

Anyways... The news is that we are going for the bone marrow aspiration this week as planned. It'll be a tough test for him, I think, but a good step in his treatment.

Wish us luck on Wednesday afternoon!

Mandy

I am sorry to report that my results are a mixed bag at this point. My doctor is apparently on vacation this week in Montana, and they havnt been able to get him on email to look at the results. My main nurse has talked to me briefly about my results, telling me that one of the markers on my test had improved, and a couple others had remained the same. From what I heard from our conversation is that I have improved since my last test, but we arent sure if its enough for me to advance to the next stage of remission.

The conclusion from my conversation with her is that we will need to wait to hear from Dr. McGee before I will know if I am able to do my bone marrow aspiration next wednesday. I may find out later today or possibly monday.

Tyler

Thanks for asking about Tyler's test results last week. They took an extra tube of blood from him at his doctor's visit on August 27th, but we are still waiting on the results of the BCR-Abl test.

We have a bone marrow aspiration tentatively scheduled for September 12th, but will try to post results to the blog as soon as we have them.

By the way, we are requesting a Gold Balloon to carry in honor of Cathy Frank. Thanks, Bill, for sharing your story with me. We're proud to be able to honor your daughter with a special balloon for those lost to the disease!

Thanks so much for all of your support!

Mandy