Accidentally deleted my last post.  I’ll blame it on the “Gleevec Fog”.

To recap, my dosage of Gleevec was increased, then decreased due to unacceptable and overwhelming side effects.  My onc is satisfied with my progress, though, which is why he quickly reduced the dosage during my very next appointment.

However, though my dosage was reduced, the side effects have continued to ramp up.  I’m suffering from increased fatigue, edema, nausea, diarrhea, muscle spasms, bone pain, fragile skin, and lowered immune system. Interestingly, though, my last PCR result was better.  Do more side effects indicate that the Gleevec is working more effectively?  Something to keep an eye on….


Back on the full dose.

And a very happy Day-After-CML-Awareness-Day to one and all!

Some things never change, do they? I’m still rehabbing the right knee, BUT it feels much better than it did this time last year. Chalk this surgery up as a success!

I’m not quite ready to tackle the left knee, so I asked my onc if I could return to the full dose of 400mg Gleevec. I wanted to proceed, as I lost PCR-U on the reduced dose. To my surprise, doc was reluctant. The reason? Recent studies show that taking a lower dose of a TKI to reduce side effects is acceptable as long as the labs are stable, particularly when the initial response was deep. He originally reduced my dose to boost my immune system for knee surgery, and he was in no hurry to raise the dose back to 400mg. Truthfully, I have enjoyed the significant reduction in side effects, but I’m anxious to try. So…

For the last 3 weeks I’ve been on 400mg Gleevec. Hello, leg cramps. Weight gain is a pain. Nice to see ya, diarrhea. (Sigh)

Revisionist History

Turns out that the leg pain (hip to ankle) is caused by spinal stenosis. I  had a nerve root block, declined the recommended spinal surgery, then got the knee adhesions removed.  While the back problem is interfering with my rehab (AGAIN!), I am in much better shape this time. The knee bends better and hurts less.

I am still on a reduced dose of Gleevec, as my onc foolishly thinks I’ll be continuing on the path of getting my left knee replaced.  HAHAHA!  Not!  I plan to get a 2nd opinion on my back issue, hoping to avoid the surgery.  My onc appointment is next week, and I hope to convince him to return me to the full dose of Gleevec. Fewer side effects are a relief, but I’d like the PCR results to say UNDETECTED once again.

Still Kicking….

Funny, my knee is on my mind more than the CML. Eight months post total knee replacement, and the new knee still doesn’t bend enough for me to climb stairs. I also have trouble when I first stand up – I just can’t take that first step. My surgeon is sending me for an MRI to verify that I don’t have a pinched sciatic nerve, then he plans to address the knee by removing scar tissue and re-calibrating the plastic insert in the knee.

Meanwhile, I’m still on the lower dose of 300mg of Gleevec, as some of my labs are low and the onc is concerned about my ability to fight infection. Note that my WBC is up because I was taking steroids, not because I’m improving. The disappointing news is that I’m no longer PCR-U. The good news is that the CML remains well-controlled and the PCR numbers are low.

Back to Work!

Still rehabbing the knee, but cleared to return to work.

Gleevec dosage raised to 300mg. We’ll sneak up on the full dose.

BAM! Here come the side effects….


On June 10, I had the long-awaited Total Knee Replacement on the right knee.

SETBACK #1: The whole leg aches, and it’s not just from the TKR. The day after my surgery, I got tangled up in the IV tubing as I was making my way to the bathroom, and I ended up on the floor with the IV pole menacing me from above. I was banished to the bed (and the lovely bedpans), because they thought I fell because I was dizzy. Wrong – it was the dizzy nurse who left the pole in the wrong spot and shut the door on me. They took me to X-ray to verify that both my knee and hip were undamaged. I am so bruised and sore.

SETBACK #2: My labs were not good. At one point, my blood pressure was 58/32, so they dropped all meds that had an impact on it. It finally stablized, but then my hemoglobin dropped dangerously, so I had to have a blood transfusion before they let me leave the hospital.

SETBACK #3: The blood thinners are extending my healing time. The day after I went home, I felt something on my leg after I finished my exercises, and saw a nice stream of blood coming from the bandage. I was patched through to the surgeon with no trouble (at 4 am!). I guess a hematoma finally found an escape route. Anyway, the doc halted my physical therapy sessions for 10 days because of the excessive non-stop drainage, and he ultimately changed my meds after consulting with my hematologist. I am no longer on a traditional blood thinner – just aspirin twice a day – and the drainage is almost stopped now after just 3 days.

On the plus side, I have restarted the in-home PT sessions. (They are exhausting.) I’m getting around better, and I’m using a cane more than a walker, now. I can straighten my knee more than I ever could before the surgery. Yay! Bending it is more challenging, but I’m working on it.

Also, my knee is starting to look like… a knee! Very cool.


It’s still here. A molecular (PCR) test taken as an afterthought came back POSITIVE:

Quantitative real-time PCR analysis for the BCR/ABL fusion transcript is POSITIVE at a relative level of 0.00462% K562 expression [BCR/ABL major (CML) breakpoint region].

Translation: It’s not gone. Never was. “She” was just toying with us. At 1/2 dose of the Gleevec, she’s back, and laughing at me. Damned you, SHE-DEVIL STEM-CELL.

Depressed? Oh, yeah….

My CML Timeline

06/2011 Anemia. No cause found.
02/2012 Anemia gone, white cells spike. BMB confirms CML.
03/2012 Started 400mg Gleevec.
06/2012 CHR
12/2012 PCR-Undetected
03/2013 Gleevec @ 200mg due to neutopenia.
06/2013 Total Knee Replacement
07/2013 300mg Gleevec post-op.

My Current Labs

WBC 3.8 3.8-10.6 15.9
RBC 3.41 3.73-4.89 5.23
Hgb 10.9 11.6-14.6 14.0
Plat 168 156-369 461
AbsN 2.4 2.24-7.68 12.4

Molecular / PCR % on Gleevec

Date I.S. Ctrl GUSB Ctrl mg
08/2016 0.0 0.0 300
02/2016 0.0 0.0 300
11/2015 <.00712 0.0007957 300
08/2015 0.0114 0.001604 300
05/2015 <.007 0.002 300
01/2015 0.0097 0.00212 300
10/2014 0.0206 0.00231 400
08/2014 0.0248 300
07/2013 0.00489 200
04/2013 0.00462 200
02/2013 0.0 400
12/2012 0.0 400
07/2012 0.1 400
02/2012 >89.0

Side Effects from Gleevec:

ONGOING: fatigue, edema
REDUCED: diarrhea, muscle cramps, nausea, neutropenia
TEMPORARY: joint pain, rash

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