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. ;)