Got my blood work done yesterday and everything looked great with the exception of platelets. All rbc and wbc were in normal range but platelets went from 600 in dec to 825 yesterday :/ I am pretty down as I thought my platelet count was fairly stable.
Is it normal to fluctuate like that? I have gained a little weight in that time (maybe 10 lbs?) but I am just wondering if this is what I can expect. 38 y male ET CALR. Asymptomatic and only on aspirin right now. Hemo doesn’t seem super worried still says I’m very low risk.
Just wondering if these fluctuations are normal and when to start exploring treatment?
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dbus1417
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I would suggest you consider interferon, pegasys or besremi. I was in my early thirties at diagnosis and mine steadily rose from the 700's when discovered to 1m over a course of a few years until INF finally started working. Side note, it took FOREVER for pegasys to work for me (like multiple years) and it finally started working after about a year at max dose, but not until about 2.5 years after starting it. The specialist thinks it took so long because of the fact that it was CALR and also the dosage. She almost took me off of it and thought it wasn't worth the copay, but I stuck it out and here we are. I had some side effects in the beginning but now I don't notice it. You'll see a lot of posts here talking about the possibility of molecular response and what that means and I will defer to others on that point, but I think that's something to consider in addition to the general benefits of platelet control and a reason why avoiding delaying is a good idea. The old adage of just managing with aspirin might not be best anymore.
Platelets can cycle by as much as 100K in a single day in response to what is going on in your body. This is normal. It plays out differently when we have thrombocytosis since out numbers are already too high. I cycled by 200K between labs for many years. This is not uncommon when you are on an aspirin-only protocol. We see variance even when on cytoreductive meds. A single fluctuation on a CBC rarely has much significance. What matters is the trend over time and what your "normal" range is.
It is not surprising that your hemo-doc was not particularly concerned. there is no linear relationship between these platelet levels and the risk of thrombosis. it is possible that you may be a bit more prone to hemorrhage when you hit the 800s. That seemed to be my pattern in the past.
Cytoreduction has tended to narrow the fluctuations I experience. It makes sense since hematopoiesis is by definition suppressed. At age 38 ET-CALR and asymptomatic you would like be on aspirin-only for quite a long time. In the absence of thrombosis, hemorrhage, or microvascular symptoms, it is unlikely cytoreduction would be considered until you reach age 60 or 65. you may actually find that you have more issues with the systemic inflammation that we experience with MPNs. Many of the secondary symptoms are often more problematic than the primary risks for MPNs.
Purple - I have been curious about interferons because I’ve read some studies that say molecular remission is possible for CALR mutation. Obviously that would be awesome if possible! If my hemo thinks it is time to start a treatment above aspirin I will most likely start with an interferon if they allow it.
Hunter - thank you for that reassurance. I am new to this so these fluctuations can be a little unsettling particularly after what I would consider a good bmb and previous cbc. I am considering going on a strict diet and focusing on anti inflammatory foods in the hopes it can directionally drive my platelets down. I don’t know if that is possible but it’s worth a try? It’s good to know that the platelet count is not a linear correlation to thrombosis.
An anti-inflammatory diet is definitely worth following. You may not see a big change in platelets, but you can definitely experience a significant change on quality of life. MPNs are at the core inflammatory disorders. Many of the symptoms we experience are inflammation-driven. In addition, there is good reason to believe that like other cancers, inflammation drives progression of the MPN. Inflammation is NOT a good thing. The evidence supporting this looks quite solid.
I'm 42, ET triple negative, on HU and aspirin. My last blood count was 625 and I was told to increase my medication.
I'd ask why you are considered low risk if you have seen an increase that much on aspirin only.
Platelets do fluctuate up and down so it may be a blip and next time you will see a decreased level. It's a waiting game but you can ask.some questions in the meantime
Evidently CALR is a more slow progressing / indolent mutation along with my age and relative good health. I have never had a thrombotic event which puts me in the low risk category.
Mine are stable around 850 but can fluctuate by 200 easily. I’ve always been told that as long as they’re under 1,000 they’re not concerned.
I’ve been on interferon before when I was pregnant and I’m really hoping o don’t have to do it again as it wasn’t a pleasant experience. I’m hoping by the time I’m need treatment (I’m 35), there will have been medical advancements and other options 🤞
I used to get mega upset when my platelets went up because it meant an increase in meds. It went on for 6 years. I’d cry and feel sorry for myself. The difference with you is your age I’m retired and now on Peg, you are not. I’m really glad you are asymptomatic. Is your heamo an MPN specialist ? If not and your platelets are bothering you maybe seek an MPN specialist. Good luck.
As everyone has said - the cycling of platelets is normal. Mine have fluctuated up or down 100 per reading and my MPN specialist basically just dismisses them as same as before...my platelets did start a steady climb upwards in my early 40's (from 500 to about 1000 at end of decade) - which is actually what led to BMB and diagnosis...as low risk as well (no thrombosis; under 65y; generally healthy) - I was on aspirin and watching for many years. If you are asymptomatic and low risk most likely the protocol to follow...having said that I just wrote a very long post on why i pushed for Peg when I did start cytoreduction hoping for an eventual molecular response (you are right that the CALR mutation seems to respond better than the Jak2 for ET)...
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