Give Me the Good Stuff

After months of a "no drinking" lifestyle, Tyler finally got the good stuff today. Dr. M needed to get a sample of Tyler's bone marrow to get a better idea of what exactly is going on inside there. Tyler opted for conscious sedation for the first time and we've concluded THAT is the way to go if you ever have to give up some bone marrow.

They filled Tyler up with a custom cocktail, guaranteed to make him drowsy but not completely knock him out. His memories are pretty foggy, so I could post whatever stories I want about what happened during his hour of sedation without Tyler being able to defend himself. Unfortunately, I can't share all of the details because he'll surely find some way to pay me back if I spread too many rumors. Although... we did talk about Tyler going to nursing school so that he could give me nightly injections of the same cocktail so that I have an easier time sleeping. :)

The Bone Marrow sample looks much like blood when the pull it out, which really surprised me the first time. This time they put the needle in his hip and withdrew a sample from there. The goal of this aspiration is to see if Tyler's abnormal cells are behaving themselves within the marrow or if we need to consider a new drug for his daily treatment. In addition, Dr Bedalov wanted to get a look at the bone marrow results to see what was going on there.

As an observer, I must admit it was fascinating to watch Tyler snoring and then hear him answer a question and then continue snoring. He was sleeping and yet not sleeping at the same time. Overall, today's appointment was MUCH better than yesterday's appointments. We're still staggered by the bad news that we faced yesterday, but doing better.

After the bone marrow aspiration, Tyler got an IV of antibiotics to help fight his crud (cold or bronchitis or whatever) and then we headed home. Dr. M and Debbie and Edna make this battle a little bit easier with their attitudes and their compassion.

I snuck off to work for a few hours, which was a good thing because it was incredibly busy once I got there.

As for yesterday, we are just waiting for Tyler's typing and Gumper's typing to be complete. If they are a match, we look to be headed towards surgery next month. Personally, I would prefer about 6 months of time between now and the surgery (to get more prepared)... But it doesn't look like we will get that chance. We will just have to make the best of a rotten situation.

Thanks to everyone who has already told me that they are getting typed for the National Marrow Donor Registry! I can count 8 others who are planning to join the registry and another one who is already on the registry. THANKS!!!

Mandy

Too Worn Out for a Long Post

Today, Tyler and I met with Dr Tony Bedalov from the Seattle Cancer Care Alliance. The net result of the meeting today was that he recommends we proceed with a stem cell/bone marrow transplant as soon as possible. We are both discouraged after a long day of bad news, so we have decided to take the evening off. But... I know several folks are waiting to hear news about our appointment today, so I wanted to post the highlights at least.

Tyler and Gump both gave blood today to begin the process of determining whether or not they are a match in tissue types. There is about a 25% chance that they will match. If they do, we have been advised that Tyler could begin the transplant process as early as mid-August.

If they don't match, we will turn to the National Marrow Donor Registry program to see if we can find a match there. If we have to go this route, we will have more of a delay while finding a match.

I signed up for the National Marrow Donor Registry today and feel really good about having completed that step. It was incredibly easy (once the Blood Bank folks found the forms for me to complete). I basically rubbed my cheek with a Q-tip 4 times in a row and filled out a form. If you have been thinking about helping us out (or doing something in Tyler's honor), I urge you to contact your local blood bank to sign up yourself.

We'll try to post more details later, but... for now... It looks like we'll be experiencing a transplant this fall.

Mandy

Eat Out benefit for LTN/LLS‏

Bristol Myers Squibb (BMS) is the national sponsor for the Leukemia and Lymphoma Society's (LLS) "Light the Night" (LTN) event. To kick off their local fund raising for "Light the Night" this year, they have coordinated with Lombardi's Italian Restaurant in Ballard to donate 20% of their profits to LLS. Please bring your family and friends out to dinner on Monday July 28th to benefit a great cause and help support the Bristol Myers Squibb Seattle "Light the Night" walk team.


Monday July 28th

Lombardi's Italian Restaurant
2200 NW Market Street
Seattle, WA 98107
(206)783-0055

Time: 5:00pm-closing
Please mention the Leukemia and Lymphoma Society or Light the Night

Worried now

Tyler's had a rough week, with the exception of his best round of golf ever on Tuesday night. After the golf, he noticed that his ankle was a little bit swollen. He couldn't remember hurting, except for a minor tweak about a week ago. The swelling was worse on Wednesday, so he asked the nurses about it when he went in for his blood test. They weren't overly concerned about the swelling, but were a little bit worried about the red color of it. They advised him to get off his feet, with ice and elevation to follow.

His blood test results were also disappointing:

WBC: 7.3
HCT: 28.3
PLT: 106

I'm worried that we might be seeing another blast crisis, so it is hard to feel comfortable right now.

Tyler stayed home from work today, to rest his ankle, but feels worse tonight than he did this morning. He's got a sore throat and cough tonight that weren't present before.

We're scheduled for our big appointment at Fred Hutch next Wednesday and then an appointment with Dr M. If he gets much worse, we'll probably try to get him in to the doctor tomorrow and not wait the full week. He just feels so poorly that it is reminiscent of his last two hospitalizations. I truly hope he doesn't have to have more drastic care, but I am not feeling too optimistic tonight.

We'll post more when we know more...

Test Results

Today's blood test results were:

WBC: 4.3
HCT: 27.9
PLT: 124

He lost a little ground in the Platelets and Hematocrit, so that is disappointing. On the upside, he was feeling okay at work today. We are hoping that a recent change in his medication will help his counts pick up over the next few weeks. If not, a stem cell transplant seems like it might be our best bet.

Fred Hutch Consult is scheduled

Tyler now has his consultation at Fred Hutch scheduled for July 16th. It appears we'll be down there for about 3 hours that day talking to a doctor, a nurse, and a financial counselor. It's scary to think about all that must be covered, but hopefully the meetings are productive and we know much more after talking to the folks down there. The materials they sent us said they perform over 400 transplants each year at Fred Hutch, so they are experienced with this. That still seems like a pretty small number to me but they also invented the idea, so they definitely have some expertise.

We will be meeting with Dr. Tony Bedalov from their staff.

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!

Results Update

Tyler donated some blood today for new test results.

WBC: 3.5
HCT: 32.0
PLT: 176

Then he played golf with Don and Libby. It's great that he can get out to have some fun while we are waiting for summer to drop by our neck of the woods.

More about BCR-ABL

In case you are curious about what the BCR-ABL is, I am including some text from the Leukemia and Lymphoma Society that explains some of the information about what it is.

Studies established that two chromosomes, usually chromosomes number 9 and 22, were abnormal [in CML patients]. Pieces of the chromosomes, which are broken off in the leukemic cells of patients with CML, switch with each other. The detached portion of chromosome 9 sticks to the broken end of chromosome 22, and the detached portion of chromosome 22 sticks to the broken end of chromosome 9. This abnormal exchange of parts of chromosomes is called a translocation. This translocation of chromosome pieces occurs only in the damaged stem cell and in the various blood cells derived from that stem cell. The chromosomes of the cells in other tissues are normal.

The breakage on chromosome 9 disrupts a gene referred to as “ABL” (for Abelson, the scientist who first described this gene). The breakage on chromosome 22 involves a gene referred to as “BCR” (for breakpoint cluster region). The human ABL gene is mutated by the breakage of chromosome 9. The mutated gene is translocated to chromosome 22 and fuses with the remaining part of the BCR gene. This fusion between BCR and ABL leads to an abnormal fused gene, called “BCR-ABL.”

The function of a gene is to direct the production of a protein in the cell. In CML, the ABL gene fuses to the BCR gene, resulting in the production of an elongated enzyme protein called “tyrosine kinase.” This elongated protein functions abnormally and leads to dysfunctional regulation of cell growth and survival. The abnormal protein resulting from the mutant BCR-ABL gene is responsible for the development of the disease.

The cause of the chromosomal breakage, occurring in nearly all CML patients, is not known, for the most part. However, in a small number of patients, exposure to very high doses of radiation causes the breakage. This effect has been most carefully studied in the Japanese survivors of the atomic bomb, whose future risk of developing leukemia was significantly increased. A slight increase in risk also occurs in some individuals treated with high-dose radiotherapy for other cancers, such as lymphoma. Exposures to diagnostic dental or medical x-rays have not been associated with an increased risk of CML.

The complete document can be found online at http://www.leukemia-lymphoma.org/attachments/National/br_1173816394.pdf

Everything went up!

Results from the June 4th blood draw were good!

WBC: 4.0 (Normal range is 4.8-10.8)
HCT: 33.3 (Normal range is 40.0-50.0)
PLT: 186 (Normal range is 150-400)

While Tyler is still only 1/3 normal, I think he's definitely moving towards completely normal. ;)