I’m 67, W and W for 2 years. My platelets have not been overly high for many traceable years pre CLL (in the 170-220 range (top of scale 400), but I am noting they are now more like 142-145. I am asymptomatic at this time and am 13q, mutated, no swollen lymph nodes, ALC of around 8. So stage0, but my low platelets do worry me if they continue to drop even without other symptoms.
Anyone else just have a lower number that is “their normal”? I’m trying to increase my leafy greens and papaya extract drops.
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ErieSailor
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Prior to the 2018 update, the iwCLL guidelines recommended beginning treatment when platelet counts dropped below 100. With the 2018 update, that treatment indication was relaxed, so that lower counts than 100 were not a trigger for starting treatment, provided they remained stable. My platelet counts were under 150 when I was diagnosed. 11 years later, they had trended down into the low 50s in the last couple years before I started treatment. By then, my haemoglobin was trending down towards 100. I needed a couple of packed red blood cell transfusions to support me through the first month of treatment, but my platelets didn't get to the point of needing boosting.
For CLL, platelet transfusions are recommended when platelet counts drop below 20 if you have an infection and 10 otherwise, so there's plenty of leeway. It's certainly a good idea to ensure your diet provides adequate nutrients needed for platelet and red blood cell production, etc., but when CLL bone marrow infiltration impacts your capacity to make platelets, I don't see how increasing nutritional raw materials can be of any assistance. The papaya leaf extract research with respect to platelet production was in respect of people with dengue fever, not CLL, so there wasn't the constraint of bone marrow capacity that we face.
Your lower number of platelets might very well be your new normal, at least your pre-treatment normal. My platelets were about 100 at diagnosis and have always been low. They fell to about 80 before I started treatment 7 years ago and for the past 7 years have bounced around between 120 and 140.
I had hoped for a more full recovery of my platelets, but have come to accept 130ish as my new normal.
The normal range of platelets is around 150 to 400, depending on what scale one uses. Our platelets fall naturally was we age, over age 70 the low end of the range drops to 130.
Your platelets are essentially in a low normal range and have a long way to drop before their function becomes any issue at all for you. As Neil wrote, platelets below 100 is a treatment indication according to iwcll guidelines. But some people can have their platelets be stable in the 100 range for years and not require treatment just due to a low platelet level.
I am no doctor, but I doubt your doctor is concerned at all with your low normal platelets. Yes they might be dropping, but thats typical with cll. Being 13q and mutated, you could be many, many years away from needing treatment due to low platelets.
I also agree with Neil that papaya drops and leafy greens probably will not impact your platelets much. But they can’t hurt either. Leafy greens, in particular, are a healthy addition to any diet and good regardless of their impact on platelets. I would check with your doctor before using any drops or other supplements.
Should you ever need treatment, there is an excellent chance your platelets will jump back up. Even if they do not, you have a lot of room to spare. Good luck.
My platelets have hovered around 100 since first treatment. Whether in remission, or not, sometimes they creep up *just* to "normal.
As long as you aren't oozing super long when cut, or getting blood draws, or having nosebleeds, you probably aren't bleeding internally so no major worries IME.
AussieNeil as always has shared excellent advice. In my case my normal platelet count averages around 60 (I have been as low as 4 but that was an emergency). BUT this is because the CLL triggered a second condition called ITP where the B cells target platelets as a virus. In your case it sounds like crowding out in the marrow of healthy cells. The main thing is to keep watch on your numbers to observe the trend and more particular on yourself. I had no idea that I had developed thrombocytpenia- it came on over about 3 weeks from a normal platelet count of 160 dropping to 4. Symptoms were covered in bruises (more bruises on my body than not bruised), Petechia, any wound bled profusely, extreme fatigue. Others get nose and gum bleeds. It is highly unlikely you'll develop thrombocytopenia but these are the symptoms to look for and take yourself off to emergency if they do occur.
My platelets went as low as 50 just before treatment and a large spleen accompanied that. Following treatment (V/O) everything was basically normal very quickly except platelets that improved to 100-110. Treatment ended 2 almost 3 years ago all is good still with bloods but those platelets remain at the 100-110 level. I am told this is likely the new normal for my platelet reading. Sometimes the platelets just do not fully recover is what was said .
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