How I was diagnosed

The purpose of this blog is twofold:

  • to keep my family, friends, etc. up-to-date about my journey with chronic myelogenous leukemia (CML), a cancer of the white blood cells, and
  • to urge those of Chinese heritage to register to be a stem cell donor, so that I (and other patients like me) can beat this horrible disease.

I will try to update this blog personally, if my health permits.  Otherwise, I may ask my sister to update it for me.

Here’s a timeline of events since I was first diagnosed:

April 17, 2012 – I was first diagnosed with chronic phase CML after a routine blood test.  My first hematologist/oncologist, Dr. Henry Solow at Markham Stouffville Hospital, told me that I was not going to die nor lose my hair.  I would, however, need to take medication for the rest of my life.  How things would so drastically change in just a few months…

October 16, 2012 – I went to Princess Margaret Hospital (PMH) for my routine blood test that monitored my white blood count and blast %.  The results indicated that my CML had progressed to the blast crisis phase in the span of 2 weeks.  Dr. Jeffrey Lipton (CML expert) told me that my CML would need to be treated aggressively now, with intensive chemotherapy and a bone marrow transplant.  He also transferred my care to Dr. Karen Yee, whose practice focuses mainly on acute leukemia patients.   Dr. Lipton hugged Daniel and me before we departed, and said “good luck”.  He was clearly upset, as so was Daniel.  I was able to hear what Dr. Lipton was telling me, but I wasn’t able to comprehend it.  It was just too shocking.  The next few days would be the darkest of my life so far…

October 18, 2012 – I spent all day at PMH.  I had blood tests, a bone marrow biopsy, a MUGA scan and an ECG.  I also met with Dr. Karen Yee for the first time.  She was accompanied by a nurse and a fellow.  She told me that my brother and sister were not a match for me.  She explained that in about 2 weeks’ time (as soon as a bed became available), I would be admitted to hospital for approximately 30 days, for intensive induction chemotherapy.   She also scheduled an appointment for me for the insertion of my central venous catheter (CVC), which would allow intra-venous access for chemotherapy drugs, transfusions, blood draws, etc.  We then discussed my prognosis, in terms of percentages and years.   Let’s just say that the percentages were so low and the years so few that I refuse to believe or think about them.

October 24, 2012 – I met with Dr. Yee today and received some positive news.  The medication (Gleevec) that I have been on for only 2 days appeared to be controlling my white blood count and blast %.  Based on this news, Dr. Yee cancelled my induction chemotherapy.  Yay!  I was very happy at this turn of events, but Dr. Yee warned me that the medication was expected to lose its efficacy in a few months, definitely within the year, and that I would still need to get a bone marrow transplant as soon as a suitable donor is found. 

Today (November 9, 2012) – I have been having blood tests twice a week to make sure my white blood counts and blast % are under control.  Gleevec is still working.  It has been almost 3 weeks since I started taking it.  I pray for a miracle that Gleevec will work forever, but I am prepared if it doesn’t.  In terms of my overall wellness, people tell me I don’t look sick, except for my balding head.  I have the usual side effects from the medication – hair loss, nausea, vomitting, puffy eyes, etc. – but they are tolerable at the moment.  I’ve even gained some weight – I’m hungry all the time!

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2 Responses to How I was diagnosed

  1. Bob Richardson says:

    Winnie

    I had the same diagnosis as you 22 years ago. Except they didn’t have Gleevac then Four rounds of high dose chemo stage 4 them they said I was too old to get a BMT in Toronto. Jeff Lipton went to bat for me. As a result I went to Minneapolis to get a non-related transplant. Ended up getting over 420 units of blood, HepC , cirrhosis of the liver and a liver transplant. Was supposed to be a goner 22 years ago. Today I have four grandchildren, play and sing guitar, and lecture on World War One. You can do it. Introduce yourself to Dr. Bernie Seigel and his books. Never give up!
    Best wishes and good luck
    Bob
    BTW ask Dr Lipton about me

    • helpsavewinnie says:

      Bob, thanks for sharing your story. It is people like you that I have hope. I will ask Dr. Lipton about you next time I’m at PMH!

      Winnie

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