March 5 will mark my one year anniversary of my preliminary diagnosis of leukemia (Chronic Eosinophilic Leukemia - CEL). My how far I have come when I look back.
I thought I'd pass along some thoughts for those who may have just been diagonosed to send along words of encouragment and to never give up the fight and to always be in control of your disease from an educational standpoint. After 360 days I can say that my life has returned pretty much to normal save for the nightly Gleevec and minor side effects (mostly GI and edema related). I work able to work my full time job and am active doing all the usual family activities. I am not struggling in my day to day routine like I was at diagnosis. I was exhausted from my anemia. That is no longer a problem, my blood levels have all returned back to their normal range. I have also been FISH negative since August. I have my next appointment in a few weeks and I have to see if they will be doing a 1 year BMB and PCR or just another FISH test. I still have my days where I am struck with fear of the unknown but always lean back on the science and say that my odds are pretty good for an extended period ahead of me. This is especially the case give the rarity of the form of leukemia I have and limited support/data for it. I lean heavily on the CML group for my comparisons, albeit not 100% similar. I'm sure I've ramble on enough but hope I have given some of you a glimmer of hope.
If anyone has any questions about my experiences thus far, please feel free to ask away.
I just had my one year appoinment yesterday at Beth Israel Deaconess Medical Center in Boston with Dr Tzackanus.
My blood work look pretty good even though they were slightly different than last time (elevated eosinophils, lower platlets, hgb, hematocrit). They were all within acceptable ranges though but through me for a loop. They also performed a biopsy/aspiration on my right hip bone. Literally a pain in the ass but a necessary evil. Procedure took about an hour with minimal discomfort/pain till the last minute or two when the pain became unbearable. Luckily short-lived. The doctors had a little difficulty in extracting the samples since my bones are extremely dense. We were all curious as the procedure go started to see if this was the case or was my last biopsy difficulties due to the eosinophils being packed in the marrow. Well that was debunked. The also took a blood sample to run the FISH test. I should hear back on all my results in about 10 days. The FISH test is done at an outside lab while the biopsy tests are all done in-house at BIDMC.
I also just celebrated one year on Gleevec. Happy Anniversary to me! I am doing well. Minimal side effects. They are mostly GI related and I am almost positive they are due to my diet. I just can't stop eating the foods I love. I am full active working and getting daily exercise. I have minimal fatigue issues. Adema around the eyes a little. That about sums up where I am at.
I'd like to send a thanks you out to the LLS society for this great resource you provide and to the members who post here. We are all family here.
Heard from the Doctor today.
FISH results negative.
They inquired about a PCR test to a few of the labs they deal with but were told they are no longer doing the PCR test for my type of leukemia.
Bone Marrow came back negative for any disease as well.
So technically, I am disease free.