Low Platelet Count - 114,000

[markjeep51]

My doctor says he will typically address a patient with a low platelet count once that counts goes below 100. I am wondering what medications are typically available to treat such a condition. Was diagnosed with CLL in 2013, currently on W & W. My WBC is currently around 20,000. I am feeling fine. My spleen is only slightly enlarged. Have no significate lumph node enlargement. Am currently on IgG infusions every 3 weeks. Note that I have done a search on this website for such information but have not come across any information on specific medications, other than possible platelet transfusions (for patients with levels below 20,000).

[Poodle2]

I think if your platelet count started trending down, you would need to start treatment (it would have to be quite quick and dramatic though). If it wasn't recovering, it would be platelet transfusions but I think they have a very short life span (a couple of days). I think based on your counts from what you have provided, you might be fine for quite a few more years, you have had 10 years and your counts are so good. Don't worry.

I have met people with a platelet count as low as 6 so you do not have to worry at this point at all.

My platelets were at their lowest around 60 and no one was bothered by that (I was already on treatment at that point).

I don't think there is any other treatment but I'm sure others will share their knowledge.

[Vizilo]

My path was very similar to yours. Diagnosed in 2014 I remained on w & w for 6+ years. I started treatment with Acalabrutinib in 2021 when my WBC was only in the 25,000 range because of severe neutropenia. A year previously I started on IVIG (converted soon after to SCIG) because of a nasty infection requiring hospitalization.

I’ve also felt well throughout with no lymph node enlargements at any time. My spleen too was somewhat enlarged but not enough to bother me. In 2016, my platelets dropped to 102. My cll specialist was not too concerned but mentioned that if it continued down, we might start with Ibrutinib. He seemed much more concerned with my low levels of IGG and neutrophils.

However, the platelets have never dropped below 100 and have for the most part stayed in 125-135 range, even with Acalabrutinib treatment during the last 2 years.

I don’t think low platelets are cause for concern until levels drop under 50,000. Treatments might include steroids or blood transfusions. My cll specialist did mention that sometimes your spleen traps platelets and a possible alternative if it became more severe was to remove the spleen. We discussed this during one of my visits with my cll specialist in 2016 or 2017 but it never came up again since then.

[lankisterguy Volunteer]

Hi markjeep51,

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I agree with Poodle2 , that your platelets will not likely change soon or in a predictable straight line.

When they do change, your doctors will look for the cause and try to deal with that.

If the cause is your CLL reaching the point of needing treatment, there will be other changes and symptoms to reinforce that diagnosis. (See this Pinned Post for explanations of treatment indications: healthunlocked.com/cllsuppo... )

If the platelets drop without other symptoms or indications that your bone marrow is blocked by CLL cells, then the doctors will investigate whether you have ITP.

See this post: healthunlocked.com/cllsuppo...

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So the bottom line is that I believe when your doctor says "he will typically address a patient with a low platelet count once that counts goes below 100", likely means when it happens he will figure out the cause and address that cause. And typically they will only give you a Palliative treatment (like a platelet infusion) as a temporary measure until the cause is controlled.

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Len

[Neka in reply to lankisterguy]

Does this probably mean a bone marrow biopsy is needed to figure out the cause?

[lankisterguy Volunteer in reply to Neka]

Hi Neka,

I'm not medically trained, but I suspect that an experienced CLL expert will look for other indications that your CLL needs to be treated, and as I mentioned in the response above:

If the cause is your CLL reaching the point of needing treatment, there will be other changes and symptoms to reinforce that diagnosis. (See this Pinned Post for explanations of treatment indications: healthunlocked.com/cllsuppo... )

If there is sufficient indication, then they would probably avoid the Bone Marrow Biopsy and move to treating your CLL.

However if there are not any other indications, then a BMB would be one possible step in investigating whether you have an autoimmune complication that is destroying your platelets.

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You really need to talk to your doctor, as most of the replies suggest.

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Len

[Neka in reply to lankisterguy]

Thank you, Lankisterguy. I'm trying to find info on whether a BMB is a common or good choice when ITP is more probable than progressive marrow failure. And, maybe neither, because a dip from 150 to 100, then back again to 150 weeks later. Blood smear/manual inspection for clumps (pseudothrombocytopenia) is something mentioned by various sources.

[AussieNeil Administrator]

Jammin_Me, It's extremely rare that these drugs are used when you have CLL. As Len lankisterguy says, specialists look for the cause and address that.

markjeep51, the latest (2018) version of the iwCLL management guidelines allow for your platelet count to drop below 100, providing it is stable, that is, not notably trending down, before starting treatment for your CLL. My specialist followed that part of the guideline when I was nearing the need for treatment. My platelets stayed in the low 90s for a while before dropping into the low 50s for a few months prior to starting treatment. They dropped further - under 30, when I began treatment, then began their recovery. I never needed a platelet transfusion. If your platelet count trends down, your specialist should be anticipating how much of a safety buffer you need based on your particular circumstances (for example if you are on blood thinners) and then treat whatever is causing your low platelet count. That might be ITP, it could be that your bone marrow is becoming infiltrated to such a degree by CLL that you need treatment for your CLL. Thats why platelet boosting drugs aren't typically used when you have CLL. They work by forcing the bone marrow to produce more platelets when what is needed is a clean-out of your bone marrow.

The rule for CLL is, as you have found, to give transfusions if your count falls below 20(,000) if you have an infection, otherwise the trigger for starting transfusions is when they fall below 10(,000).

As Poodle2 says, transfused platelets don't last long, only about 4 days.

Neil

[markjeep51]

Thank you so much for your reply; it makes total sense. I will keep your thoughts in mind, if / when my oncologist suggests that I be placed on some kind of platelet medication.

[02Raspy]

I’ll trade you. My platelets are 50. WBC was 110K before I started V&O 2 months ago. Hoping for the best.

[MickUK]

My platelet count dropped over the course of a few weeks to below 20 and after a taking Prednisolone (50mg/day) it didn't really improve.

I started O&V treatment with the first Obinutuzumab infusion on 12th December, during which I reacted quite badly but got through it and also the 2nd day on 13th with no reaction. However my platelets dropped to 4 on 13th and I was given a platelet transfusion after which the platelets rose to 24. On Saturday 17th December I had a slight nose bleed so contacted the emergency Oncology dept who called me in for a blood test (platelets - 7) and subsequent 2nd Platelet transfusion. I continued with the Obinutuzumab infusions in the coming weeks and completed cycle 3 on 9th February.

In the meantime, it was decided that I should delay starting on Venetoclax due to my low platelets, so I didn't start until 23rd January. On Thursday 26th I saw my consultant and she prescribed Romiplostim to improve my platelet count along with reducing the steroids. Romiplostim is an injection which I administer myself once a week and it seems to have worked. My platelet count was 30 on 30th January, 102 on 6th February, 176 on 13th February and 172 on 20th February.

I started the regular ongoing dose of 400mg of Venetoclax this week and my other bloods are looking good. The consultant is hoping that now we are treating the CLL that production of platelets will improve, so fingers crossed and wait and see how it goes.

[wmay13241 in reply to MickUK]

I found Romiplostim information on medlineplus at: medlineplus.gov/druginfo/me...

[Poodle2 in reply to MickUK]

I'm so happy your counts are improving, my platelets also dropped significantly after the first O infusion but as I was starting from a better place (105), it wasn't quite as dramatic as yours. I hope as your bone marrow is getting healthier, your numbers will continue to improve.

[Paulhonda]

Platelets below a 100 are not a problem, unless they are steadily falling. I have been on W&W for well over 20 years and for the last several years, my platelets have been well under 80 and as low as 60.

[GargR]

Hello markjeep 51Eight months through ibrutinib therapy, my platelet count had once dropped to 56000. Someone suggested dragon fruit a day for fortnight before I consider medication for the deficiency. It worked for me and the count is staying around 130000 ever since. Hope it works for you too, if you try.

Wish you all the best.

[IRN83]

I was diagnosed in 2008 with CLL and have been treated, and am currently being treated, 5 times. In the 15 years I’ve had CLL I’ve only had two blood tests where my platelet count was over 100, and I got tests every 6 weeks for 12 years (I had a port until recently when it was removed because of sepsis in the port). My platelet count was in the low 30s but has recovered. As far as I know there is no treatment for low platelets, just transfusions. And unfortunately, platelets have a short life span and you have to have transfusions frequently.

[MickUK in reply to IRN83]

See my post above, Romiplostim seems to have worked for me, thankfully.

[skipro]

hi

I’m a surgeon and the teaching is that we can operate as long platelets are above 50k

I’ve had CLL for over a decade

My platelets have hovered between 90 to 105k the whole time

The problem with CLL is crowding in the bone marrow. The B lymphocytes are the cancer cells and crowd out space for other cells like platelets to grow.

the ones that grow aren’t as healthy so get removed by the spleen which is why the spleen gets big.

Treating the CLL will lead to improvement in platelet counts and spleen size. My spleen went from double normal to normal after 2 round of chemotherapy.

One exception is autoimmune platelets deficiency which can be treated with steroids

Good luck and God bless.

Skipro

[markjeep51 in reply to skipro]

Thank you very much for the reply since it has been quite difficult to have a discussion concerning this with my oncologist; he's just too busy. My questions is, since my white blood count (WBC) is only in the 20,000/uL range, I would think this count level would not cause any signficant crowding within the bone marrow or any significant number of deformed platelets being created. Note that my spleen is a bit larger but is not causing me any discomfort. I would tend to think that if the platelet count gets to over 50,000, then my "guess" is that one would, at that time , start to see a negative effect on the platelet count. But I have not seen any data in regards to the correlation between WBC count and Platelet count. Do you have an opinion ?

[AussieNeil Administrator in reply to markjeep51]

Sorry, but you can't assume that because your lymphocyte count (ALC) and hence your white blood cell count is low, that your platelet count won't be impacted by your CLL/SLL. In the SLL presentation of this blood cancer, you can have a very high degree of bone marrow infiltration and a normal ALC/WBC. Then you've got the varying impact on your platelets from how much your spleen is enlarged, then there might be a degree of ITP - Idiopathic Thrombocytopenic Purpura involved.

Neil

[markjeep51 in reply to AussieNeil]

I understand what you are saying. But I do have a technical question: When a platelet count is performed, are all the platelets counted ( both normal and the defomed ones ) ? Or are only the normal platelets counted?

Is there a process where I can get a count of my normal and separate count of my abnormal platelet ? My current platelet count is 114,000. If all these are normal in configuration, then that's a good thing. If all these are abnormal, then I would be very concerned.

[AussieNeil Administrator in reply to markjeep51]

IF there are deformed platelets, they may not be detected in automatic counts. Your MPV (mean platelet volume) result might also be out of range. My lab automatically performs a manual inspection of my blood when an automatic count is outside the normal range, so I've regularly had pathologist's notes with my blood test reports. I assume that this is a reasonably common practice, given the concerned posts we see fairly regularly. Otherwise, ask your GP/PCP or specialist to request a manual count.

Neil

[skipro in reply to markjeep51]

hi

CLL is very complex disease process.

There is not necessarily a direct correlation of each of the cell lines.

For example, when my total lymphocyte count was around 30,000, my platelets dropped to 70,000 and remain there for a couple of months, and then bounce back to just over 100.

when I had my first round of chemotherapy, my total lymphocyte count was 225,000 and yet my platelets were still around 100,000. My spleen was at least double it’s normal and impinged on my pelvis. Whenever I tried to ride my bike do sit ups or bend over.

Three weeks after the first round of chemo, immunotherapy my labs and spleen. We’re all back to normal.

Before I started my fourth round, my neutrophil count and platelet count dropped to dangerous levels and I went in every month. I’m sorry every week for a test to see if it was safe to get the fourth round of treatment. However, after eight weeks, my cats were still too low and I had to start treatment.

They took about nine months to a year for my neutrophil counts to return, and I was on four different antimicrobials during that time.

The CLL relapse, two years later, in June 2020 and initially the lymphocyte count was growing at an astronomical rate, while all of the other cell lines remain normal.

Then the lymphocyte count leveled off for quite a while and then took another huge jump.

Starting in 2022 my platelet count dropped and remained somewhere between 90 and 100,000 words been for the past year.

my hemoglobin has gone up and down but I am still anemic.

Currently, my lymphocyte count is 160,000, and my platelets are about at 100,000.

However, my spleen is very enlarged and painful again.

Bottom line is that this is a variable disease with all sorts of different factors that can affect the different cell lines, lymph node size, spleen, size, and other issues.

All the best.

Skipro.

[markjeep51 in reply to skipro]

Thank you. I understand.

I just sent another comment which you might want to weigh in on, in regards to whether a platelet count consists of both normal and abnormal platelets. It seems to be worthwhile to know the percentage of abnormal platelets within ones CBC platelet count test.

[skipro in reply to markjeep51]

as far as I know it’s all of the platelets with comments like “abnormal shape” or such

But not a specific count of normal v abnormal

[Gradyboy]

I don't know your situation but my CLL specialist told me not to take any ibuprofen or aspirin. They thin your blood. They said to stick to Tylenol for aches and pains if needed. I was taking Motrin 800 for a kidney stone when first diagnosed and that was the only time my platelets dropped below 200. Just a thought .

[AussieNeil Administrator in reply to Gradyboy]

That's a very good point. I too have been advised to avoid NSAIDS because they can suppress counts. It's Tylenol (perhaps better known as Panadol, APAP, Paracetamol or acetaminophen depending on your country) that's been recommended for fever or pain management. Currently a drop in my platelet count is thought to be from pregabalin.

Neil

[DawnRedwood in reply to AussieNeil]

Being on Imbruvica, I was told I can't take anything but Tylenol.