Nine month check up

I had my nine month check up a few weeks ago. Yes, I am delinquent in posting the results.  My pcr, which measures the number of leukemic white blood cells, is down to 0.5% on the International Scale.  It is 0.2% on the Mayo Clinic lab's scale, but I like the International Scale because it is simple.  Everyone's starting point is 100%, a one-log reduction is 10%, a two-log reduction is 1%, and a three-log reduction is 0.1%.  I don't need a book, computer, excel spreadsheet, or even an adding machine to understand that.  So, 0.5% is a 2 1/2 log reduction, which means I have probably achieved a Complete Cytogenetic Response (CCyR).  CCyR means that if we were using FISH instead of pcr, I would not have any leukemic cells.  FISH is a less sensitive test than pcr.  Many doctors still use FISH until the number of leukemic cells is too small to be measurable by FISH, then switch to pcr.  However, many oncologists, including mine, are no longer using FISH after diagnosis.  CCyR can only be confirmed by bone marrow biopsy, but fortunately, my oncologist doesn't believe in doing more of them than necessary.  Achieving CCyR is the most important marker for long term survival, so this was good news!  The next goal is MMR, major molecular response, or a 3-log reduction.  Achieving MMR within 12-18 months of diagnosis is not necessarily associated with better survival rates than achieving CCyR without MMR, but it is associated with higher rates of  progression free survival (PFS) and event free survival (EFS).  In other words, my long term quality of life may be improved if I achieve MMR within the next nine months.

Meanwhile, my hemoglobin and red blood cells are continuing to decline.  I believe this affects my fatigue levels, because when my hgb and rbc were normal in November, I felt fabulous.  They've been declining ever since.  We've ruled out low iron, low B12,  and low thyroid.  The remaining possibilities are a blood disorder unrelated to CML, or a toxicity effect of my CML medicine.  Too much medicine built up in my system is the most likely culprit, but if the numbers are still declining at my next appointment, I will probably have a bone marrow biopsy to rule out a blood disorder.  I admit, I'm curious about whether multiple blood disorders and cancers are likely to occur in the same person, but I certainly hope I don't have yet another disorder.  I had HELLP syndrome with two of my pregnancies, and one of the elements of that is destruction of red blood cells.  I have met another person who also had HELLP syndrome with two pregnancies, and now has CML.  Maybe there's no connection, but I should ask my oncologist whether the question has ever been raised or studied.  Assuming my medicine is the cause of my anemia, my oncologist has suggested that we change medicines.  I am hesitant to change because I don't want to have to deal with the adjustment and possibly a new set of side effects.  If my pcr continues to drop with Tasigna, I might ask if we can lower my dose rather than changing medicines.  Dosage adjustment is more common with the other TKIs than Tasigna, but it's not unheard of with Tasigna, so I think we should at least consider that option since my other side effects have subsided and the anemia is my only ongoing issue with Tasigna.

In non-cancer news, Rebekah turned 16 this week!  I still remember when she turned 10, she said she didn't want to be double digits.  She enjoyed being a child and wasn't in a rush to grow up like most kids, but nevertheless she has grown into an amazing young woman.  She is the most honest, trustworthy, loyal person I know.  She doesn't like to draw attention to herself; she just quietly goes about life doing the right thing.  Her name means captivating, and it is fitting because she is beautiful inside and out.  She participated in Spring Fling this month, her theater class's spring performance, and did a great job.

Rachel's high school graduation is just two weeks away!  It's hard to believe she will be moving to college soon.  She is so excited to go to college, and we are excited to see her entering this next stage of life.  She is a hard worker and we know she will meet the challenges of college head-on.

Katie had two piano recitals this month and her dance recital is coming up at the end of June.  Her dance school has a new teacher from England.  He was in Riverdance for three years and holds numerous championship titles, so we are excited to have him on board. 

We will be traveling to MD for my family reunion on June 16. We can't wait to see everyone!

Cancer Symptoms Women are Most Likely to Ignore

You might remember from my early posts that I had symptoms that I should have been concerned about before my diagnosis.  This link spells out many symptoms that can signal cancer, but may be ignored.  Please see your doctor if you are experiencing symptoms from this list.  Even if you have no unusual symptoms, everyone should have an annual physical that includes a CBC.

A break from tax season

Tax season is more than halfway over! I took a break from the insanity today and had a Date Night with my wonderful husband. Before we moved to NC, a client told me that Shuckers has good seafood.  Baltimoreans are very particular about our seafood, so we kept Shuckers in mind for those times when we are craving some good seafood.  After living here nearly 13 years, we finally went to Shuckers this evening and had lobster tails and raw oysters. It's not that we haven't had seafood cravings since we moved here. But we usually just wait until we visit Baltimore to fill them.  A couple years ago, a Maryland family opened Backfins in Wake Forest, and we've enjoyed their steamed crabs and crabcakes several times.  So did we like Shuckers?  Yes, we did.  I think we'll be going there again in the future, and maybe we won't wait 13 years this time.

Almost halfway through tax season...

Seven weeks down, nine to go!

On January 25, I got my 6-month results.  I was half expecting bad news because of the way I've been feeling, but my pcr was 0.6%, down from 2.4% at 3 months!  What a relief to see that number going down!  The doctor was concerned with my fatigue levels, so I had extra blood drawn to check my thyroid and iron levels.  Both are normal.  My hemoglobin is a little low, so that is probably the culprit. 

Our Christmas Letter

December 25, 2011

Now that Christmas is here, I suppose I should get our letter written and cards in the mail! The past year has been a wild ride with many ups and downs!

Rachel has been accepted to UNCG – University of North Carolina at Greensboro. She called me in tears when she received her first scholarship letter. She is very excited about attending college and beginning her adult life. She teaches 2^nd grade Sunday School at church and serves on the Student Leadership Team for the youth group. She works very hard in school and is a member of the National Latin Honor Society and National Art Honor Society.

Rebekah is a sophomore and beginning to think about college. She wants to be a writer and editor. She is a creative, imaginative writer. She enjoys spending time with her friends and being a part of the church youth group.

Katie is in 5^th grade and is still homeschooled. She enjoys playing the piano and Irish dancing. There is an Irish pub in Raleigh where her dance academy performs about once a month. She competed in feises (pronounced feshes) in Raleigh and Charleston this year where she won several medals. She was very excited to start hard shoe dances a few months ago.

Roger continues to hold down the fort at home and run the girls to school and their activities. He has also done quite a bit of carpentry work this year which has allowed him to add a few things to his power tool collection. :-)

We were blessed to go home (Accident, MD) in June for the family reunion. Thank you to my sisters Dorothy and Juanita for making this an annual event! In September, we spent a few days in Myrtle Beach while Rachel and Rebekah were tracked out of school. It was still warm enough to get in the water and lie on the beach, but there were few people there. It was a very relaxing vacation! We spent Thanksgiving in Baltimore where many family members gathered at Dorothy's house. We enjoyed visiting the Baltimore Aquarium and eating dinner in Little Italy the Saturday after Thanksgiving. Roger also enjoyed fishing in the Gunpowder River.

Most of you receiving this letter know that I was diagnosed with chronic myelogenous leukemia on June 30 following a routine physical. I went from shock and fear at being told, “we think it's a leukemia type thing,” to giddy relief when told that the type of leukemia I have is the most treatable type, to despair when admitted to the hospital two days later, to joy at being told I could return to work and “live your life,” to disappointment when realizing how much leukemia affects my daily life in spite of being treatable and manageable. The roller coaster is beginning to level off as I adjust to living with CML. I was told that a time would come when every waking moment would not be filled with, “Oh my gosh, I have cancer!” Now that I'm reaching that point, I'm finding it difficult to remember to take my medicine. :-) It's always something, eh? If you want to read the details of the past six months and follow my future progress, I have a blog at www.myleukemiajourney.blogspot.com.

We are thankful for the many blessings we have experienced in 2011. We have felt God's presence during the valleys as well as the mountaintops. So many friends and family have supported us with meals, prayers, cards, and encouraging words. We wish all of you a happy, joy-filled 2012.

A long overdue update...

November was my best month so far and hopefully more months like that will be in my future.  I felt normal for most of the month. I traveled three times (to Washington DC for a tax conference, to Charleston, SC for Katie's dance competition, and to Baltimore for Thanksgiving with family) and didn't feel worn out from it.

On November 29, I felt myself beginning to spiral down.  During December, I have felt tired and sluggish, and I have struggled to be productive at work.  "Cancer fatigue" is different from normal fatigue in that coffee, vitamins, and rest do not offer a reprieve.  I am thankful that I am not experiencing pain, nausea, and other symptoms that often come with cancer and its treatment. But I do get frustrated when I can't be productive or do all the things I'd like to do. 

Sometimes I think that Roger will think I'm just being lazy and not wanting to help around the house, but he often tells me that I sound or look tired before I say anything about how I'm feeling.  He encourages me to take it easy and get more rest.  I am thankful that he is understanding and supportive.

We are blessed to see how God provides for us in spite of my struggles.  As most of you reading this know, I am the breadwinner for our family. But in months that I've struggled and my hours were low, a carpentry job seems to drop in Roger's lap and he is able to make up the shortfall. 

My monthly doctor appointments have become rather routine.  My blood counts have been stable for several months now.  In January, I will have my six-month appointment, so that one is a bigger deal.  I will have my pcr checked again, and we really want to see a decrease this time.

Good news, bad news

On October 28, I had my blood draw for my 3-months-on-Tasigna bloodwork.  I had to wait until November 10 for the results, but I was so busy during the wait that I didn't have time to worry about the results.  I've been busy at work, and I went to Washington, DC November 6-9 for a tax conference. Yes, it was as exciting as it sounds!

First, the bad news:

My pcr went up from 1.8% on September 28 to 2.4% on October 28.  Pcr measures the number of cancerous white blood cells, so you always want to see that number decreasing.  A three log decrease (1/1000 of the percentage at diagnosis) or .01% on the International Scale is considered a major molecular response (MMR). Even better and what every CML patient hopes for is PCRU - pcr undetectable.  Now, I didn't expect MMR or PCRU after only 3 months of treatment, but I didn't expect to see the number increasing, either.  I was very disappointed even though my oncologist assures me that it is a minor fluctuation and not something to worry about.

The more minor bad news is that the internet was going in and out while I was at the doctor's office, so the doctor didn't have access to all of my lab reports.  I think the reason he had my pcr results is because they are done by the Mayo Clinic, so the results get faxed and there is a paper copy.  All of my other labs are done in-house.

On to the good news:

The three month treatment goal is a complete hemotological response, which I have achieved.  This means:
1) My white blood cells are below 10k.
2) My platelets are below 450k.
3) I have no blasts in my peripheral blood.
4) My spleen has returned to normal size.

My hemoglobin was 12. Normal is 12-15. YAY!  Having normal hemoglobin should help somewhat with my fatigue levels.

My white blood cells are low, but the doctor didn't have the exact number.  Apparently, they are above 1k, because if they drop to 1k or below, I have to take a break from my medicine for a few weeks.

In non-cancer news, we spent the past weekend in Charleston, SC where Katie competed in the Lowcountry Feis.  A feis is an Irish dancing competition. She came away with a 3rd place medal and 2 first place medals. She was finished by lunch time, so we spent the afternoon sight seeing in Charleston. We rode a ferry to visit Fort Sumter and ate some great seafood at the Charleston Crabhouse.