8 replies to this topic

[Lisa Lisa]

Hi all,

My blood tests have shown anemia and low iron saturation for many many years. Iron supplements (by prescription) did not help as my body would not store iron. In 2000 my numbers started decreasing at a steady rate on each bloodtest. My PCP suggested iron infusions but I never wanted to. All my other blood levels were okay, a few out of range nothing crazy. In 2011 after reaching dangerously low iron (serum14) (iron saturation 3, yes 3) I started passing out. I decided to take care after one real scary episode while driving.
Went for iron infusions 2012-2014, asking the doc if this iron "rush" could maybe hurt me, being I had been functioning on lowest level possible for many many years, and it was "normal" for me. He said no and I said well.., my body is used to these levels, you better not be giving me one problem for another.

Joke was on me as my anemia magically disappeared and in July 2014 had perfect labs, first time in 15 years, anemia normal levels. Bam, six mos. later and dx with leukemia.

So in my case did the anemia go hand in hand w the CML? Or did fixing it mess with my genes? Or is that a silly coincidence?
Has anyone else been anemic prior to CML diagnosis or had iron infusions prior to diagnosis?

[Trey]

Low iron by itself does not show early stages of CML.  And iron infusions do not cause CML.  It would be more instructive if your platelet counts were high during the early tests.  High platlelets is one of the primary early indicators of CML.

[Billie Murawski]

Hi Lisa L,

  I have always been anemic too, and I couldn't take the iron pills, but I was never bad enough to get infusions until a couple years ago I've gone about six months now without infusions so maybe I'm finally stabilizing I'm down to 20mg Sprycel now so I think that really helps too.

[Lisa Lisa]

Hi Bille,
I hope you are able to keep the anemia at bay. Yes, I hope the low level of Sprycel will help you from having the low iron levels.

Trey, I couldnt help it. I looked up my platelets.
2/12 - 288
8/12 - 250
1/13 - 250
9/13 - 330 giant platelets noted
1/14 - 300 giant platelets noted
7/14 - 300
2/15 - 440

[gerry]

Never really noticed low iron (due to heavy periods). When diagnosed, got told I had no iron stored in my bones. Doc put me on iron tablets, Alway hovered at the top end of low iron, interesting to see if it changes now I've going through menopause. lol

[Billie Murawski]

gerry, men-o-pause never ends, they can retire and pause we can't .

[Trey]

The high platelet thing does not apply to everyone.  But you did have some platelet dysfunction as shown by the giant platelets.

[Floa7]

My sister had high platelets, like 5 years ago. She was on hydroxaryea (SP), till her platelets were too low. She still takes that hydroxyrea

She now takes one every other day to keep her platelets in normal range, to prevent her from getting CML. She gets regular blood work every 3 months.

 

Hereditary My sister.... my son and me both have CML

[Lisa Lisa]

Wow Floa7 I didnt know CML can be hereditary.