7 replies to this topic

[snowbear]

I just had a routine appointment with my Hema/Onc.  BCR-ABL test results were not in yet, but we are hopeful that I am at or very near CCYR (I started Gleevec 12/30/2014).  I asked doc if I still needed bloodwork every month and appointments every 2 months or if I could go every 3 months at this point.  She said not until my bloodwork normalizes.  WBC and platelets are normal, but my RBC's are still wonky.  I don't have enough of them (slightly anemic), the RBW is abnormal, the shape of the cells is abnormal (I don't understand how or why), hemoglobin is low, but iron binding capacity is high. 

 

I thought Gleevec could cause low blood counts, but doc says it should be normal and she wants to watch it more closely until it gets and stays in the normal range.  Is this something to be concerned about or is she just being overly cautious?

[RayT]

I'm writing this while receiving a blood transfusion for anemia. My counts yesterday were HCT=25.7, HGB=8.3, RBC=2.6. I haven't seen an HCT over 31% since before I was diagnosed with CML in Jan 2014. Monthly blood work is a pain, but your doc needs it to identify problems quickly while they're still small. Mine have been more like every 2 weeks recently,today is 2nd transfusion since August. Due to cardiac issues it takes 6 hours to transfuse 1 unit of blood.

I was feeling sorry for myself about an hour ago then thought about kidney dialysis patients who are chained to machines for hours like this 3 times every week.

Hang in there!

[snowbear]

Wow...those are really low numbers. You must feel awful.  Did it happen suddenly?  Do you know if it's from the CML or meds?

[RayT]

Numbers have been getting gradually worse. Having CML, CHF, COPD, GERD, splenectomy due to Hodgkins Disease and the 14 meds to treat those problems makes me a diagnostic nightmare for my docs. My poor wife (a music teacher) wanted to scream when she asked "why" regarding my bilateral pleural effusions in August and got the exact same answer from me, my oncologist and my cardiologist: "We don't know and can't tell."

I actually look/function much better in real life than what my medical records say. Denial is a wonderful thing! 😃

[hannibellemo]

Just so you and your onc know, Snowbear, your counts may never "normalize". My counts have been high below normal for over 6 years.  What is her definition of "normal", do you know?

[kat73]

I have to second hannibellemo.  It never ceases to amaze me the range of treatment and reactions of the various doctors we all go to.  I have never come all the way up to normal on my "reds" (including sometimes the abnormal shapes) and absolutely nobody is worried about it.  I also was on a 3-month schedule from the first six months on.  I never was sent to the ER to get blood drawn at diagnosis.  The several doctors involved in my "origin tale" all assured me that CML was slow, there was a great outlook, and things probably were going to be OK.  Of course, my mileage did indeed turn out to vary a tad, but still, I look back and am so grateful that there was no added drama to contribute to my understandable shock and fear. I wonder how long it will be before all medical personnel are on the same page on how to treat (both literally and emotionally) CML patients?   One helpful thing my doctors have all done for me is to let me in on their true outlook on numbers - in other words, despite the lab's listed normal range (or the Internet's) what they REALLY consider the edge of bad.  I usually find out that it's WAY lower than you'd think, and I'm pretty far above it.  My onc succinctly put it once, when I questioned some particular lab value, "That number is "normal" for cancer patients - that is "normal" here at our institution. Don't worry."  He also has said on numerous occasions, "That's not the CML doing that, it's the TKI.  Don't worry."

[Melanie]

I agree. Sometimes it just takes a while for the Dr to get a good feel for what is "normal" for each of their patients, by building history and data. I've had low counts since dx and starting TKI's back in 2009. Been through many transfusions, nuepogen shots, and antibiotics. For years, I had to get weekly labs and still do most the time. Once a month labs now seem too long and kinda scary but so nice. My arms look like I'm a drug addict. He,he... Guess I am with my TKI.
Regardless, now the only time we do transfusions is when my HBG is below 7.5; and shots when my ANC are below 0.5. We don't bother with antibiotics unless I actually have symptoms. These numbers work for me, but may not for someone else. Only time will tell what your body will tolerate. This is all brought on by the TKI, not the CML, but you have to find a balance between enough TKI to control the CML and still maintain the side effects to a livable quality of life. It takes a while, but don't worry, eventually you level out to what's normal for you. Hang in there!

[snowbear]

Doc means normal as within the normal ranges.  My RBC and related labs have been low since about a year before my CML diagnosis.  I was being treated for possible RA/Lupus and my PCP told me it was "anemia of chronic disease" and taking iron supplements would not help because I don't have enough red blood cells to carry more iron.  

 

It's really borderline - just under the cut off so I'm not too concerned.  Onc says it's not low enough to even be the cause of my chronic fatigue - that's probably just a combination of autoimmune disease, CML & all of the meds I take.