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

It seems Tyler took a turn for the worse last week and we don't know exactly why. His congestion returned and his energy took a downturn. We talked to his nurse on Friday and found out a few more medications that he could take for relief. Also, she said that even though he only took 5 days of antibiotics, the medicine would stay in his system for 10 days.

But after a rough weekend, he called the doctor again today and got wedged into their schedule. First, they asked him to stop and get a chest X-ray on the way in. Unfortunately, the X-ray didn't help them determine what was happening exactly.

At this point, the doctor's best guess is that he'll continue to fight this infection and feel better. If his coughing continues to get clearer and less often, than we are good. If he is feeling any worse, we have to go back in for a CT Scan to rule out a blood clot in his lungs.

We'll let you know when we find out something more.

Mandy

It's been a rough week for both of us. I woke up with a bad cold last Wednesday. I was feeling bad enough that I actually left work early and went home and climbed into bed. Tyler caught my cold (I think) by Saturday and just got worse and worse. It was reminiscent of the pneumonia he had just before the wedding. Tyler spent most of Sunday and Monday sleeping, which is very unlike him. He was also running a fever, so we called Dr. M's office on Monday morning and Tyler got a prescription for antibiotics.

On the third day of antibiotics he was feeling well enough to go back to work. When I checked with him this morning, he said he was better today. He still sounds congested, so that I don't recognize his voice on the phone, but he isn't coughing quite as much anymore.

It does make us a little bit nervous. We don't really know what medications he can take while on Gleevec, so it is tough to give him relief from his symptoms. They approved Tylenol for aches and pains, but we'll have to keep researching to find out what else he can take.

Tyler now promises to stay far away from me the next time I sick. I don't think he wants to go through this again. I guess that means I will have to take extra care with my health now too, so that I don't put either one of us at increased risk.

On a much more positive front, our friends Mark and Vicki just gave birth to their first child. We would like to officially welcome Collin to the world and we're hoping to be able to meet him in person soon.

That's the latest from our house...

Mandy

Our visit with Dr. M on Tuesday was as anticlimatic as it could get! The machine they use to test Tyler's blood was broken, so we don't even know what his test results were this month. Probably the best news we got at the doctor's office was that at Tyler's 6 month checkup (next month), they will again test his BCR-abl level to see how much progress he has made. They expect that his blood will be negative for the bad chromosome and that we will have to progress to bone marrow tests.

We finally got our team set up for Light the Night, so you can now join Team Firefly at www.lightthenight.org. Thanks to those of you who have generously supported me already! I appreciate it more than I can say!

We are off to Bellingham for the weekend to abuse our bodies in another soccer tournament -- wish us luck!

Mandy

In Need of Names

Hey all!

I am completely stalled on what to name our Light the Night Team and need to ask for your ideas.

Dad suggested Leukemia Skywalkers, which is pretty darn good. I was thinking along the lines of Tyler's Trekkers, but it doesn't have the ring that Dad's does. Do you have any ideas? If so, please post a comment on this message. Tyler and I will pick our favorite team name from all of the ideas we get.

Thanks!

Mandy

It's hard to believe that most of July has passed with very little notice. We're due back at Dr. M's office next week for our next blood test update, but I don't expect anything too exciting there. Tyler continues to play soccer (and is looking better and better on the field). He's on a bit of a scoring trend here where he tells me that he might be too old to play and then scores a goal to emphasize the point. I'm not sure I get what he is saying yet...

I'm headed to Denver for my annual Stampin' Up! convention. I am looking forward to some fun stamping there and the chance to see some college friends who moved over there, but it seems like it is approaching too rapidly. I'd like to organize a few swaps to take with me, but my order of new catalog stuff just came in today. We'll see if I get extremely organized over the next week.

I've got my Light the Night registration in the system, but haven't gotten any confirmation on our request for a team. Tyler voted that we should be called Team Firefly. We had seen a performance from Faith Hill with her new song Firefly and thought it was appropriate. It's all about believing in your dreams and following your heart. We thought it worked both for "Light the Night" and for our thoughts on the song we heard.

I'm off to spend the weekend celebrating with my cousin, Nicole, a bride-to-be! See you soon!
Mandy