6 replies to this topic

[Mayra]

It all began with a phone call from my OB last Wednesday... Today I was diagnosed with CML.  Although it was a roller coaster ride, I'm glad I have a diagnosis and can move on with treatment.  I'm scared of what's coming but, after reading the post on this site I am reassured that starting medication is the right thing to do. Weird part is that I don't feel sick.  So  when the doctor says you have Cancer it's hard to make your brain process.  I'll be starting Sprycel tomorrow so wish me luck.

[ritan/]

welcome. wish you weren't here or more to the point, wish you didn't have to find us. glad you found you're way here tho! hugs

[BY196]

Welcome Mayra! My story is just like yours--got a call on a Friday from my OB/GYN's office that my WBC count was 120K and to come in for a redraw on Monday. On Monday, when I looked at the differential at their office and saw I had blasts, I knew I had leukemia, and the high platelets and relatively normal RBCs and Hb told me it was probably CML. (The weekend had been spent with Dr. Google.) It's really jarring, isn't it, to go from a routine visit to cancer?

You are in a good place here on the boards. Folks here have dealt with side effects, drug switches, pretty much whatever you want information on. I'm on Sprycel and it has been a little bumpy but totally manageable overall. My oncologist was really upbeat when I saw him yesterday; he had just come back from ASH (big hem/onc conference) and was feeling very positive about the additional drug development and opportunities it offered for harder-to-treat patients.

Beth

[Rissa]

Welcome Mayra.  I think a lot of people with CML had no clue that anything was wrong when they were diagnosed.  I sure didn't.  Went in for a routine physical in April of last year and that's how it was found.  The only symptom I had was night sweats and I just thought I was going through premenopause.  Glad you found us.  There are a lot of good people contributing to this site.

[CallMeLucky]

Although shocking, there is an upside to catching it this way.  I had very similar situation, sans OB.  I went for physical feeling perfectly fine, quite healthy actually and got a call a few days later to go see a Hematologist/Oncologist - it was the Oncologist part that caught my attention quick.  The upside is that you have not had to go through the sick part, being caught early makes for a better prognosis in most cases.  This is a 2x4 to the head but you will likely find over time that although you did not expect this, it does not have to tear your entire life apart.  It will feel like it has for a while, but in time things will settle down, treatment will likely work for you as it does for most people.  CML will not be the first thing you think of when you wake and last thing before you sleep.  You will see that there are days ahead of you and there can be a decent life for someone with CML.  While it is certainly cancer, you will see that it is more of a chronic condition and something that while challenging at times, will just be something you need to learn to live with.

I was on Gleevec for 2 1/2 years and recently made the switch to Sprycel due to side effects.  So far so good.

Try to stay calm as much as you can.  The odds are greatly in your favor that you will survive this and still have a long life ahead of you.

All the best......

[Tedsey]

My story is similar to Lucky's.  I also went in for my yearly check up.  I felt very well, (although I had a baby and a just 3 yr old at home and was basically sleep-deprived).  I did the check up thing every year.  Got a call later that night to rush to the emergency room for repeat blood work.  Turns our my WBC was 180,000.  I had a small lump growing in my abdomen a couple of weeks before diagnosis, but I thought it was a hernia.  My friend who also just had a baby developed one.  It was a miracle, but there was a fellow who was at the hospital that night and was called to see me in the ER, (it appears the ER attending had an inkling there may be leukemia--but I had to endure these two giggling and goofy girl residents who took turns prodding me and asking me dumb questions--that was so annoying).  The fellow told me it was likely CML.  After 5 days of testing in the hospital, he was right and they let me go home for Thanksgiving with my assured diagnosis.

Ironically, I had blood work 8 months prior for a reduced life insurance rate, (retrospectively, we should have taken out much more on me).  The blood work came back normal.

Luckily, I was diagnosed in the chronic phase.  Just like CallMeLucky, I am on Sprycel and so far so good.

Take care.  I wish you peace at this unsettling time,

Tedsey

[Mayra]

Thanks everyone for the kind words!  I have learned so much already from this forum.  It's amazing how dumb this disease can make you feel.  This forum is really helping me understand the terms and acronyms. I do feel like I am on information overload.  Hopefully I can get some sleep and stop worrying so much about the future??  The side effects are messing with my brain.