I had 4 out of 6 cycles of FR but they were halted because of low platelets (75-85).
My specialists have ordered a CT scan to see where the disease is at (first one) and if satisfied will stop FR indefinitely. If not then may switch to Ibrutinib or continue with FR if my platelets recover. My neutrophils are good (2.85).
My question is that I have noticed my Liver markers have changed:
Billirubin is up to 22 (range is 8-22)
LDH down to 136 (range is 140-271)
Does any one know what this is indicative of?
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naddude
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your bilirubin is still in the normal range even though it's at the top end. That can be a reaction to your chemotherapy treatment but is nothing to worry about at the current level.
Your LDH has reduced which is great news and shows your CLL disease is no longer active.
LDH can provide an indication of CLL tumour growth. A few years ago I did a correlation check of my LDH and Absolute Lymphocyte Count (ALC) and found that my LDH result was a reasonable predictor of changes in my ALC.
LDH is most often measured to check for tissue damage. LDH is in many body tissues, especially the heart, liver, kidney, muscles, brain, blood cells, and lungs. Other conditions for which the test may be done include: Low red blood cell count (anemia), (also CLL and Richter's transformation)
So it sounds like a low LDH is not a problem especially given that my platelets are also low (ALC and WC are now normal). What about Billirubin (upper range of 220?) And what do you think about the plan of action to probably atop at 4 out 6 FCR cycles given the platelet drop?
I'm not medically qualified to talk about stopping treatment, but if it was me I would want to know if I was close to MRD negative... which will require a BMB. Don't even know if its possible on FR....
Regarding platelets the range you are in is pretty common during treatment...if you started on the low side. ~100-130
I was treated with 6 rounds of FR, and only had a clinical remission for a month then a Richter's transformation... so you just never know... 😋
I had another thought about this going from FR to ibrutinib.
Your doctor needs to understand that Imbruvica (ibrutinib) effects the TEC gene on platelets, and while ibrutinib doesn't lower platelet numbers too much, it does clearly effect how the platelets function...Ibrutinib affects collagen and von Willebrand factor (VWF-mediated) platelet activation..
Since I'm an ibrutinib bleeder, I have read all publushed data on this, and you need to consider that a lower platelet count and poor 'clumping' might be problematic...
Hi again. I started FR in April of 2017 and stopped in August. On Ibrutinib since November. My bilirubin has slowly doubled from around 11 in early 3017 to 22 today. My platelets recovered after a low of 77 after FR but have dropping for 3 months now at 102. Wondering if further investigation is needed or are all the possible side effects. I was doing large dose green tea powder up to 2017. Hope no liver damage. But could also be bile duct obstruction . Any thoughts?
It may not be uncommon for platelets yo drop if the bone marrow is being cleared out by therapy. Mine dropped to 42 but my doc didnt seem worried. They popped back to the 90s 2 weeks later. I had 80% infiltration of BM and the low platelets is a side effect of my therapy is low platelets...NOT a reason to stop at least in the 40s. I am on Gazyva.
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I am CLL patient previusly treate with FR. I need to be treated again. I need some advice please.
Fluctuation of Platelet Count
Follow up on low platelets and stopping Acalabrutinib 
