Updates on Others

We were quite saddened to see that a fellow transplant patient that we followed via his mother's blog just passed away from complications with his transplant. It really brings home to me how different our experience could have been. Nick was in the hospital for about 60 days with significant breathing difficulties and signs of leukemia in his spinal fluid. We are praying for comfort for his loved ones as they grieve for him.

While our road to the transplant was incredibly painful and tested our strength significantly, the post transplant challenges have been mild in comparison. I was incredibly nervous that no search was made to find a perfect match for Tyler, but they kept insisting that his protocol (the specific transplant instructions) wouldn't need a perfect match. It appears our doctors were right!

In addition, I wonder if they have found a transplant method that might work well for others with fewer post transplant complications. I would be interested to find out the results of the study and whether or not the other patients had similar results. We did see one lady on the same protocol while in UW Hospital before Christmas, but I don't really know much else about her progress. Also, we don't really know anything about the long term results of this transplant. Relapse is a risk for all transplant patients, but they were specifically testing whether or not the radiolabeled antibody injected before the transplant would decrease the risk of relapse.

Our friend, Hans, is doing well on Sprycel. All of his blood stats seem to be lower on Sprycel (as compared to Gleevec), but I actually wonder if this might be a good thing. If the Sprycel was having an effect on his blood making ability, wouldn't it make sense that all of his blood making abilities would be affected? If you wouldn't mind saying a prayer or two for him, we would appreciate it. We are hoping that he will achieve remission on this drug and be able to stay in maintenance mode for many years.

some good news.......maybe?

Today was hopefully a beginning to a run of better news for Mandy and I. We dont have anything in writing yet, but I talked to a case manager with Premera this morning and it appears that they will have to cover part of the transplant. Because Seattle Cancer Care Alliance/Fred Hutch/UW are the only provider for allogenic stem cell transplants, they have to provide coverage since it is a unique qualifying event.

Now, that made us smile quite a bit today but I also know not to get overly excited until we get this in writing and the HLA blood typing for Gump and I is underway. My doctor has also recommended that we switch medications to get me into a better position for transplant. We hope to get this process underway immediately, and if Gump is a match.....I may be ready for transplant around end of September or early October.

I am still sick as my immune system is fighting, but it is fighting several things. It is fighting the recurring Leukemia, my respiratory issues, fever, and who knows what else? Basically, I have been sick for about 2 weeks straight now, and I am sick of being sick! I tried to get out of the house, and spend time with mom in Sequim. I was able to get away for a day and a half, play some cards and even got in some golf! I was able to finish 18 holes with a cart, but my calves, knees and forearms have been extremely sore since then! Hopefully my new medicine will get my immune system back into shape in the next week or two.

We will let you know more as we go.

Tyler

Another curveball

We were thrown another curveball today when the Seattle Cancer Care Alliance folks called to say they couldn't get authorization to start the typing process with Gump and Tyler's blood because the insurance company would not pay for it. Apparently Fred Hutchinson and the Seattle Cancer Care Alliance are not "preferred providers" for Tyler's insurance plan.

We're scrambling to find out what our options are because we need to get this process going as soon as we can. The surgery was quoted in the $300,000 - 400,000 range, so it would be steep for us to cover without insurance assistance. Please wish us luck as we navigate the world of insurance and charitable foundations and whatever other financial worlds we need to investigate.

After Friday's bone marrow results told us that Tyler's leukemia is getting out of control, we are anxious to get moving towards a more long term cure. They've upped Tyler's Sprycel dosage to 110mg per day and added Hydrea to the mix to bring his too high White Blood cell count back down into normal ranges. His Monday blood test showed that everything had stayed about the same over the weekend, which was okay for now. We're hoping for a better mix of numbers on Thursday at the next blood test.

Tyler is commuting to the doctor's office from Sequim this week to get daily IV's of antibiotics. It takes about 30 minutes for his IV, but the commute is lovely and the company is great over in Sequim, so it's probably still worth it.

It's been one heck of a July for us and we are both looking for some good news pretty quickly here. Thanks for the great response in posting comments here to let us know you are thinking of us, for joining the NMDP to see if your marrow or stem cells could help someone like us, for praying for Tyler's health. We feel very loved this week!!

Here's hoping I have better news for my next post...

Mandy

Disappointments today...

Today was another appointment with Dr. M. Tyler's blood counts had climbed up slightly after last week's drop, but Dr. M told us that the results of the latest BCR-Abl test indicate that Tyler's disease is kind of at an impasse. While in a partial remission, his CML is neither progressing or retreating and that is not good enough.

Our options at this point are to try Tasigna (the next generation of drug) or get a transplant. So... He's referring us to a doctor at Fred Hutchinson to get an initial consultation on whether or not Tyler should get a transplant. It's a huge disappointment to be back at this point, but perhaps this option will work in ways the drugs have not.

Tyler's brother, Gump, is the first option for a bone marrow or stem cell transplant match. Unfortunately, there is only a 25% chance that Gump will match up with Tyler (can you remember genetics lessons from school??) so we may need to go to the Bone Marrow Registry to find a matched unrelated donor (mud) for Tyler. That means you can help!

If you live in the Puget Sound area, please consider signing up for the National Bone Marrow Registry through the Puget Sound Blood Center. Donors joining the NMDP Registry must be between 18-60 years old and in good health, and must meet the NMDP Donor Eligibility Guidelines. For questions about donor suitability, contact the Puget Sound Blood Center at bonemarrow@psbc.org or 206-292-1897 or 1-800-DONATE1 x1897. Typing is as simple as getting a cheek swab that they can run through some tests.

If you live elsewhere, you can sign up anywhere across our nation. Please contact the National Marrow Donor Program at http://www.marrow.org to get more details about programs in your area.

Donors who are not suitable to join the national Registry can help patients in other ways such as making a financial contribution to tissue type other donors. It typically costs between $25-52 to get registered, but you have the opportunity to save someone's life (even if you don't match up with Tyler)! What a gift you can give to someone like Tyler and me!

Thanks for your willingness to help, your prayers, and your friendship!

Holding steady

Tyler's numbers from the 4/30 blood count were actually quite surprising to both of us. We learned that, while his numbers are low, they are consistently low and didn't appear to be dropping too strongly. He is definitely anemic and has a slightly low platelet count, but the doctor decided not to change his dosage as we expected.

Every time Tyler has had BCR-Abl test results since his relapse in December, the markers they look for have been creeping down. This is one of the biggest benchmarks of whether or not the treatment is working, so that's great news. While we wish they would drop faster, any improvement is good.

On another interesting note, Dr M told us (for the first time in my recollection) that Tyler has the P210 mutation of leukemia and that Sprycel was showing to be the best drug against that mutation of those that area available. He said that the mutation had been there from the start, but other types of leukemia cells had overrun his body and made this one harder to find.

Next week, they'll take an extra vial of blood to get another BCR-Abl test. We don't know the results until we meet with Dr. M again on 5/28, but we will hope to see positive blood results each week in the meantime.

Weekly Counts and Soccer Update

Tyler's counts held steady again this week, so we were pleased with that. The doctor seemed to want to raise Ty's Sprycel dosage, but didn't want to put him into an anemic state. So for now, he stays at 80mg per day of the Sprycel.

WBC: 3.8
HCT: 34.8
PLT: 189

Tyler was given a slightly longer leash too. He now has 2 weeks of blood draws only and then a doctor appointment on 4/30. Hopefully his longer leash is a good one and he feels good the whole time!

One side note that we haven't mentioned earlier... Tyler was officially released to play soccer in time for our first Spring Season game on March 28th. He showed off "the move" more than once and burned the opponent every time.

Weekly Counts and Dosage Update

WBC: 2.9
HCT: 33.5
PLT: 161

When Dr McGee saw that Tyler's counts had dropped this week, he decided that we needed to drop Tyler's dosage yet again. I guess he also signs of increased toxicity in Tyler's liver too, so he needed to play with the amount of drugs flowing through Ty's system.

Anyways... He's down to 80mg of Sprycel now, so we'll hope that dosage is the right one to fight the Leukemia.

Does He Look Pale to You?

I think Tyler is starting to look a little bit pale with all of the blood he's been giving over the past two months... What do you think? (Just kidding!!)

He went for another blood test yesterday and all of his major counts went down. I must admit... I am confused with what is happening to his counts and nervous that he will drop into the danger zones on some of them. For those of you following the numbers, Platelets were at 108, White Blood Cells were at 2.5, Red Blood Cell (actually his Hematocrit) were at 26.5. The doctor lowered Tyler's Sprycel dose to 90mg per day (from 110mg) with yesterday's test counts. We'll see how his blood looks with that change at our doctor's appointment next Wednesday.

On the upside, he did start back to work on Friday 1/18 and has been working part time since then. I think he is enjoying getting back into work, although he is a little bit stiff after such a long break from activity.

We are headed to Wenatchee for the weekend to celebrate my cousin's wedding. I look forward to seeing as many family members as are able to travel to Wenatchee with the cold winter weather. We are so excited to share in Bryan and Heidi's celebration.

See you there!

Mandy

And He's Climbing

Tyler went in to the doctor for a blood draw on Wednesday this week to find that his platelet count had climbed into the 90s. Whoo hoo!!! Unfortunately, his red blood cell (RBC) and white blood cell (WBC) counts had fallen a bit, prompting the doctor to modify Tyler's dosage schedule for the Sprycel. He's dropped from 70mg twice a day to 110mg once a day. Hopefully he continues to experience the same great results in his platelet counts and also gets some consistency in his RBC and WBC.

He's still off from work and bummed about that, but he is keeping plenty busy around the house for now. Today he is off car shopping, so that we can replace the mini and have a car in place by the time Tyler starts working again.

All Good Streaks Come to an End

I must admit that I failed miserably at predicting Tyler's blood counts on Wednesday, January 2nd. I predicted a platelet count of 54 (would you say I am optimistic?), when in reality it was a solid 36. Red blood cells dropped to 28.1 from 30.7 on the previous visit.

We finally got to meet with our regular doctor, which was a treat after two weeks of substitute doctors and nurses. We brought up some questions we had about stem cell transplants, including the timing of when Tyler might expect to have one. Much to our surprise, Dr. M said that he actually is against transplants for most cases because the majority of the risk in a transplant is at the front end. Complications during surgery, the possibility of rejecting the transplanted cells, etc. all occur within the first few months if you are getting a transplant.

Our other possible path is to stay with the Sprycel, assuming Tyler continues to respond well to it, for an indefinite period of time. Dr. M suggests that we do the initial work for the transplant, so that we can move on that quickly if needed. The matching process will probably be the most time consuming part of the preparation, so they would need to determine if Gump is a match for Tyler long before the surgery might actually be needed.

Tyler has a blood test only next week, and then we meet with Dr. M again on January 16th. It's nice to have the freedom from daily doctor visits, although Tyler is still unable to work. Hopefully his blood counts on the 16th will have improved enough for him to go back to work. He's close on being able to work now, but the doctor is playing it safe since both red blood cells and platelets are still in a low range. Once Tyler gets his platelet count back up to 150, he might get to play soccer again. So now you know what our real goal is... We'll do anything to get back on the field!

I have been starting to read more about nutrition so that we can plan our diet to be supportive of Tyler's therapy. So much of what I have seen in other research supports the idea of a whole foods diet. I guess I might need to start shopping at Whole Foods now! ;) With luck, we will only need small changes to see improvements in our health.

Thanks for the prayers for health in 2008! I'm hoping that he continues to respond well to the Sprycel and that the clinical trials in process go well, so that more and more effective medicines are released soon.

Happy New Year from both of us!

Mandy

Tyler bows before his wife's superior skillz

Tyler and I have been in the habit of predicting his platelet count over the last week and I've had a pretty good record so far. While I missed yesterday's count (by a whopping 9), I was dead on this morning and it was the best one yet!

For the first time this month, Tyler's platelet count increased on its own! He actually climbed from 28 yesterday to 31 today. Our nurse says that platelets are the last thing to recover from a marrow crisis, but it's great that Tyler's finally gotten there. While we have had no tests to see test for abnormal cells, this test suggests that the Sprycel is doing its job and getting the blast crisis under control. Once the blast crisis is back under control, Tyler's body is able to make useful cells like healthy white blood cells, red blood cells, and platelets.

Another bonus from today's visit is a brief hiatus from the doctor -- we get to sleep in tomorrow and avoid going to the hospital for a blood check. It'll be only our second day away from the hospital/doctor since we got back into the country. :) We are so excited to have a day off!

We are hopeful that he has turned a corner in this current battle and thank you for your continued prayers!

Mandy

High Octane Fuel

Tyler is on daily blood checks this week to make sure his platelet and red blood cell counts stay at a good level and today's check indicated that he needed a little boost in platelets. So we headed across the parking lot to get his fueling. He says it is funny that he doesn't feel any different with his platelets at 14 (today's count) or his platelets at 40 (Monday's count). His red blood cell count has been holding steady, so we are thankful for that.

After a little hiccup in getting the platelet request to the blood bank, they found a match and got the unit of platelets to us as soon as they could. Tyler was hooked up to an IV for about an hour to get the drip and then we headed out. Unfortunately, it was a day of delays. We left home at 8:30am this morning and I dropped him off about 2:30pm after all of that. Where does the time go??

Overall, he is doing well, so we are very thankful for that. We did learn a lot more about stuff going forward and some of it was hard for us to hear. If Tyler opts for a transplant, he will likely be on immunosuppressant drugs for the rest of his life. I don't really know that means in terms of work, soccer, other parts of life so we need to look into that. It also looks like Tyler will probably need to get platelet transfusions about every 3 days for a little bit.

They should have a better idea of how well he is responding the Sprycel after a few weeks, which will determine what happens next with his treatment. Dr M2 (filling in for our regular oncologist over the holidays) says that they will not be able to do the transplant while Tyler is in a blast crisis. It is critical that we get his disease back under control.

Here's hoping the Sprycel does what we want it to do!

Mandy

Great Possibilities

When we met with Dr M (and our favorite Oncology nurse, Debbie) this morning, the doc said that Tyler was essentially healthy enough that his remaining symptoms could be treated as an outpatient. However, we could not leave the hospital without having a supply of Tyler's medication (Sprycel). Just an interesting fact on that... Dr M says that Tyler is the first Premera patient to be approved for Sprycel. It's a relatively new medication, having only been approved by the FDA in June 2006. A newer version (Tasigna) was just approved yesterday, so more possibilities are on the horizon.

Anyways... Tyler called me this afternoon to say that the medicine was supposed to be in at the pharmacy until late today. I just got off the phone with them and it is in now, so I am off to pick up Tyler's medication. Hooray for that because it means he will most likely be released TOMORROW!!

Merry Christmas!

Mandy

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

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