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. ;)

Learning about BCR-ABL results

We met with Dr. M and got more test results on 5/28/08

Tyler's numbers were:

WBC: 3.5
HCT: 31.0
PLT: 160

In addition, we got the results of Tyler's BCR-ABL test from earlier in the month. The doctor says this marker continues to improve, although a little bit slower than one would like. It's been tough to understand these since they are measured in log reductions and it has been a long time since I got to dig in on a math topic like logs. Essential the ratio is the number of abnormal cells divided by the standardized normal number of cells.

In any case, Dr. M shared with us the results from the last few months.

Feb: .5
Mar: .3
Apr: .3
May: .1

While Tyler still has abnormal cells, there has been continued improvement so the doctor opted to leave him on the same dosage schedule for now.

We don't see Dr. M until the last week of June, although Tyler will continue to go in for weekly blood tests this month.

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Test Results

Tyler's Blood Counts stayed low this week, but he had no dosage change. Next week we see the doctor and should get the results of his BCR-Abl, so hopefully it is all good news!

WBC: 3.5
HCT: 31.2
PLT: 170

Need venue for fundraising dinner

I'm looking for a place to hold a fundraising dinner for our Light the Night team this summer. My preference would be to hold the event on a Saturday evening in August. If you know of a facility that we might be able to rent for the evening with little or not cost, please let me know via comments to this post or e-mail. We are open to different locations, but would hope that the size could accomodate 50-100 people for dinner and possibly a silent auction.

I'm also looking for volunteers to help -- food donations (I'm thinking a Spaghetti dinner could be delicious), setup crew, cleanup crew, donated auction items. If you have time to donate, that would also be much appreciated.

Thanks!

Mandy

Test Results Update

Tyler counts for the current week were:

WBC: 3.5
HCT: 33.4
PLT: 181

Happy Mother's Day

Happy Mother's Day to all of the moms around us. We wish you all of the accolades that you deserve (we know you are unsung heroes)!