7 replies to this topic

[snowbear]

My red blood cell counts have been low since before diagnosis, but now it's dropping even further.  How low is too low? 

[Trey]

My RBC hung around 3.6 - 3.7 for years after diagnosis, and dipped to as low as 3.4 at one point.  I was not overly fatigued at those levels, but I also was not at full energy.  HGB may be a more important indicator than RBC, although they are related.

[mscl]

I had low RBC after diagnosis 4 years ago, even had to have a few blood transfusions early on. I don't think it was a result of CML, (gentleman, close your ears now if you don't want to know this) but I was having periods from he!!. Had the big H surgery, RBC is fine now. I do, however, hover around the low normal on platelets.

[scuba]

My RBC hung around 3.6 - 3.7 for years after diagnosis, and dipped to as low as 3.4 at one point.  I was not overly fatigued at those levels, but I also was not at full energy.  HGB may be a more important indicator than RBC, although they are related.

 

Trey - what are your RBC levels now? Did your lowering dose have an impact?

[Trey]

At half dosage (200mg Gleevec) my RBC is now at the very low end of normal.  If I were still at full dose I believe my RBC would have remained below the normal range.

[scuba]

At half dosage (200mg Gleevec) my RBC is now at the very low end of normal.  If I were still at full dose I believe my RBC would have remained below the normal range.

 

Good to know. My RBC's are only now climbing above 4 (4.1) - still below normal (by any scale currently used) but close enough to be unfelt. RBC used to be steady at 3.75 for the longest time. Stopping Sprycel for nine months seems to have reset my new normal. Resuming 20mg Sprycel did not drop my RBC's (or HCT/HGB) back to the old normal - dropped a little bit but not much. My HCT and HGB are solid normal now. The anemia I had felt when exercising before is gone. 

[snowbear]

I was borderline low at diagnosis and stayed stable around 3.5-3.8 after.  Now, it's dropped to 3.2.  My hemoglobin jumps from 10-12'ish.  It's 10 right now - not terrible.  My platelets took a big dive this testing period too.  They are still within normal range, but they had been high and went from 400 to 250 in just the last month.

 

I am tired and easily fatigued.  I sleep up to 14 hours a day.  On weekends, I can easily take 2 naps a day.  I still haven't gotten the results back on my Vitamin D, but I do take supplements and a multi vitamin every day.  Thinking of going back on blood builder supplements.  I used them before when my hemoglobin dropped to 7.2 and doc was threatening me with a hysterectomy. 

[scuba]

Snowbear ... my RBC's as I wrote above were much lower than they are now along with hemoglobin and hematocrit. My primary doctor told me to increase my iron levels (those were low too) and to take an "organic" B-vitamin. It does seem that may have done the trick. My iron levels are twice what they were and my hemoglobin and hematocrit are now in the normal range.