How did they treat your low platelet count? What if low platelets are more of an issue than high white blood cells?

[davidgrush]

I wonder about others with low platelet counts. What did they do for you? My wbc count is not that high compared to many; about 18,000. No CLL symptoms yet. But my platelet count is dropping and has begun to touch below 100. It is possible that I will begin treatment because of low platelets, and not because of other symptoms. Has anyone had this issue, where platelet counts are more of a problem than lymphocyte counts?

[AussieNeil Administrator]

First off, a high lymphocyte/WBC count is not a reason for starting treatment, but a lymphocyte doubling time of under 6 months indicates to your specialist to look for confirming evidence that treatment time is approaching.

As you appreciate, a falling platelet count is one of the triggers for starting treatment, where the threshold used to be when it fell below 100. However, in the iWCLL 2018 Guideline update, that treatment trigger was modified to allow the platelet count to drop below 100, provided the count was stable, that is not trending down notably.

It is possible to take medications such as romiplostim (Nplate) or eltrombopag (Promacta) help your bone marrow produce more platelets, but those medications can increase your risk of blood clots. Unless your low platelet count is caused by Idiopathic Thrombocytopenia Purpura (ITP), an autoimmune condition more common with CLL, your falling platelet count is most likely a sign that your bone marrow is approaching failure due to CLL infiltration. Starting treatment for your CLL should result in your platelet count improving, probably after an initial further fall.

My platelet count dropped into the 50s in the year prior to my (first) treatment, then under 30 before recovering. Platelet transfusions are not given unless your platelet count falls below 10 if you are otherwise well and below 20 if you have an infection.

This pinned post covers the treatment triggers: healthunlocked.com/cllsuppo...

Neil

[davidgrush in reply to AussieNeil]

Thank you so much Neil. Great response. I hear about people with 100k or more lymphocytes, so I'm surprised that my marrow might be failing at 18. I know everyone is different. And perhaps there is another reason for low platelets; ITP or spleen issues. I'm surprised that they let your platelets drop to the 50's before starting treatment. What was your first cll treatment?

[AussieNeil Administrator in reply to davidgrush]

Professor Terry Hamblin, the CLL researcher who discovered the importance of IGHV mutation status, used a guideline of platelets falling below 70 before starting treatment. Interestingly, the new iWCLL change doesn't state a threshold below 100, which wisely leaves it to the clinician to make their own assessment, based on the patient history (the degree of change in platelet count along with that of other cytopenias) as well as the degree of anticipated platelet suppression from the anticipated treatment, etc.

I'm on the ACE-CL-311 trial, in the Acalabrutinib+Venetoclax+ Obinutuzumab arm. Ironically, my platelets recovered into the 150s before stabilising around 100. They should recover further in the next few months as I'm finishing treatment medication other than an antiviral this week.

Neil

[cajunjeff in reply to davidgrush]

David, it seems like you have a good handle on the situation. My platelets at diagnosis 5 years ago were about 100. I had no idea what that meant at the time other than it wasn’t good.

My doctor at MD Anderson where I went to for second opinion seemed less concerned about my platelets being at 100, more concerned about how they trended. I assumed my platelets were crashing, but he told me they could hover around 100 for a while and be fine. My watch and wait period of time was only two years.

My amateur opinion for anyone whose platelets drop below 100 is that treatment is probably near. But we are all so different, who knows for sure? If your platelets have been on a rapid drop, treatment is likely around the corner. If they are stable around 100, you can function quite fine at that level for who knows how long.

Platelets can get clogged up and destroyed in a spleen saturated with Cll cells. Most treatments available today can flush CLL cells from the spleen which is likely to improve your platelets.

The very best Cll doctors treat not so much on any certain lab level but rather on the whole picture. Platelets dropping below 100 is no absolute benchmark to treat, it just depends on how stable they are and how other labs like wbc and hemoglobin are doing.

But 100 platelets dipping below 100 is still an important indicator that Cll is on the move and treatment is likely near in the next few years. That’s just my amateur opinion based on my experience and what I have read.

[KatieBlue in reply to davidgrush]

These were my lymphocyte counts for a few months leading up to treatment. They didn’t even crack 30K until after I started treatment (due to redistribution effect).

Lymphocytes -

17,760 3/18

21,650 4/18

26,010 5/18

20,330 6/18 (same day of bone marrow biopsy showing 90% cll- stage 4; platelets 88K)

29,000 7/18

23,740 7/18 b

25,880 8/18

26,770 9/18 - started treatment

Diagnosed 3/17. Told I may not ever need treatment. They tended to be dismissive about my concerns bc my numbers were so good, often comparing them with other patients’ WBCs and lymphocytes (“we have patients with counts in the 100s of Ks and who still don’t need treatment...”).

I was stage 0 based on lab work, right up until I was stage 4.

[davidgrush in reply to KatieBlue]

Great sarcasm at the end there KatieBlue. I really appreciate the details of your experience. Glad you saw my question. Thank you. One thing. I'm surprised they decided to do the bone marrow biopsy so early on. Was that because of the platelet number?

[KatieBlue in reply to davidgrush]

Hey David -I should have grabbed my platelet numbers when I was going back in to get lymphocytes. I had to scroll back through each test date to click in then scroll through all the CBC breakouts to get to lymphocytes— the “view past results” where you can see all of them side by side in date columns isn’t working.

Essentially there was a downward platelet trend, and even with the low lymphocyte count, there had been a doubling / close to doubling from (iirc without going back into my electronic medical records) ~fall 2017 to Feb 2018. (I’m sure other patients’ lymphocytes did a better job at doubling than mine, too, lol.)

Feb of ‘18 was when the plan of reducing labwork from quarterly to six months to yearly to 18 mos, changed to monthly.

[Lancerlady in reply to AussieNeil]

Great response! I had to get a platelet transfusion in May when I developed pneumonia (On Mother's day how fun). I also have severe copd with emphysema and Liver disease (NASH) I am a mixed bag of chips for sure! I would like to add to research the medications and see if there is anything in there that you are allergic too and read inserts about the certain diseases, like the ones that say "you can't take this drug if you have liver disease" etc. I had an oncologist give me nplate and it landed me in the hospital for 5 days. They couldn't figure out why I was so sick!! I ended up calling the manufacture of the nplate and they said I should've never been given that due to my Nash stage 3 (Non alcoholic Steatohepatitis) (minor scarring); also there was an ingredient in the drug I was allergic too. We just have to be careful and not just take stuff cause our doctors think it's good. Its sad that I had to get the manufacturer of the NPlate to talk to the hospital doctor to release me saying it would just take time for it to run its course out of my system. Some doctors don't like it when the patient is their own advocate. Sometimes we have to be, it's our life and bodies. Just my 27 cents....lol

[Hidden in reply to Lancerlady]

WOW!!! CONGRATS!!! So glad you called the manufacturer of the drug! Most of us wouldn't have thought to do that, and actually I would have thought I'd never get anybody important on the phone! You took care of your own problem that the doctors never really looked at to see if you could take the drug or not. Most doctors don't. We really do have to look out for our own welfare and do what we think is best for us............even when we're in the hospital. Amazing.

[Jonquiljo]

My platelets are/were around 100 - occasionally dropping a bit below. I have supposedly indolent CLL, and my ALC is in the 9000 range and WBC around 18,000 - no symptoms or enlarged nodes. Those numbers have been pretty stable for about 3 years - with platelets being the only exception -- bouncing all around the place. All other blood counts are pretty normal.

My CLL Dr is totally unconcerned about my platelets unless they take a nose dive. Recent blood work shows that they are around 150K. In fact they had often dropped to 150K long before (years) I had CLL.

So I am not sure as to what all this really means. I have been told that when you have symptoms, you think about treating -- but low platelets have to get really low to trigger treatment.

[seelel]

David - With an ALC of 18000, I would be questioning whether your platelet count of 100 indicates a crowding of the marrow as long as your haemoglobin and neutrophils remain in the normal range.

Science is an ongoing process of recognition of past mistakes and new discoveries. My own experience of flagging platelet numbers but normal numbers of other blood cells produced in the marrow, suggests to me that there may be such a thing as mild and intermittent ITP. It just hasn't been recognised yet and found its way into the medical literature.

I have experienced a few times when my platelets have dropped below 100 (as low as 60), and they have returned to above 100 again (with a little nudge). I have shared this 'little nudge' with 3 other people in a similar situation, and they have also experienced a similar increase in platelet numbers.

So when a person has a classification of Stage 1 CLL one day and find they are classified as stage 4 the next day, something in my opinion, needs to be addressed. Commencing treatment is no small thing (says he as an observer who hasn't been treated in nearly 15 years). The longer treatment can be deferred, the better options that become available. My haematologist started talking FCR with me when my platelets dropped to 60. It motivated me to explore the world of falling platelet numbers, as it isn't only confined to CLL.

[davidgrush in reply to seelel]

Yes. Thank you seelel. This is what I'm wondering about. I assume my doctor will try me on a steroid at some point to see if it is ITP if platelets keep dropping. But apparently it is not good to stay on steroids long term. One little nudge I've heard about is papaya leaves, but it is expensive.

[Biker7]

It’s important to remember everyone is different.

Falling platelets have served as an indicator that treatment was near for my husband.

After 10 years on W&W he was still quite healthy and fit though his lymphocytes were over 250. But suddenly the platelets made a rapid decline to the 20s. A bone marrow biopsy showed he was 13 q del. A corse of Prednisolone raised the platelets After treatment he felt well again except for occasional fatigue days.

About a year after the treatment, the fatigue continued and he was getting intermittent abdominal pain. But his Lymphocytes were in the normal range and we were assured he was doing well. We were uneasy but were told to relax and enjoy another probably long W&W. An appointment was made for four months later.

But suddenly the platelets plummeted to under 20.

This turned out to be a blessing in disguise. A bone marrow biopsy revealed that his bone marrow was 60% infiltrated so he was relapsing. This surprised his haematologist. Prednisolone again was used to raise platelet levels and treatment was planned for 4 months later.

Then I discovered HealthUnlocked and we began to be more proactive regarding his treatment. We learnt the importance of getting 2nd opinions from CLL specialists and we asked for a copy of the biopsy results. This was initially denied and caused us a lot of stress.

The results revealed he had SLL - he was now 11q del and a CT scan revealed multiple significantly enlarged abdominal glands.

So platelet decline served as an excellent indicator that more investigation was warranted in his case.

[Biker7]

I accidentally pressed reply as I was editing, the third para should read:

A course of Prednisolone raised the platelets and he was treated with Gazyva and Chlorambucil. After treatment he felt well again except for occasional fatigue days.

Sorry about that!

[morepork]

Yes we are all different. My platelets took a dive from the normal range within a couple of months of starting Ibrutinib, and now hover up and down in a range between the 70's and 80. But so far the range is stable so nothing further has eventuated beyond an ongoing discussion about anticoagulants due to other factors. 😊

[Accordion]

David! I have had very low platelets the past five years, a roller coaster. Was diagnosed as ITP. Prednisolone all the time in various doses. (seems if prednisolone helps it is more likely ITP) Since almost two years Revolade (Eltrombopag) and now small dose prednisolone. On Revolade my platelets shall stay on 50-100 plts, to stay away from thromboses....It seems if I get a virus, my platelets decline, if I get a bacterial infection they rise. (plts have been from 0 - 419 this past year) My specialist hemathologist dr says, platelets are very unpredictable. Wbc has been quite stable accept for a few times when they rose steadily which was handled with Mabthera infusions. My dr says it is not time for treament yet since my wbc and rest are ok, but he will chose Venetoclax when it is, maybe soon. Right now blood work every week, following a chest infection.The body seem to handle low platelets surprisingly well. When I started this journey the new BTK inhibitors were not in use here. You will have much better options! Good luck!Christina

[davidgrush in reply to Accordion]

Thank you Christina. Never heard of revolade. Don't yet know that I have ITP. What side effects do you get from revolade?

[Accordion in reply to davidgrush]

Hi! Revolade (eltrombopag) is called Promacta in the US I think. It has been used for several years for people with ITP. (without CLL)Was considered first not to be used for hematological malgnancies. A phase II clinical trial published 2018 showed that it can work. doi.org/

10.1111/bjh.15581(Dont know how to link)

About side effects: AussieNiels answer was good. I think the main issue is risk for blood clotting. That is why you aim for ”safe” but not normal platelet numbers. So I feel I balance between risk for bleeding and clotting, but my dr says it is not so bad.

There are diet issues: You can’t eat dairy products(calcium) and other things 4 hours before and 2 hours after taking the pill. I now take it in the middle of the night, since I wake up numerous times anyway. Dont think I have side effects, but who knows. Tired and weak, is it the CLL or what?

Prednisolone high dose gives me high blood pressure, which can be really bad.

You also have to check blood for kidney and liver values every month. That has been ok so far for me.

It is very expensive, but in Sweden we are lucky and dont have to pay more than a small amount.

Having platelets around 100 would be great, having been under 20 several times. For me Revolade is a life saver, but I long for a treatment that will help deal with both the ITP and the CLL. Some say that once they treated CLL the ITP resolved.

My best wishes!

Christina

[stevesmith1964]

HiI was diagnosis of CLL was only picked up from my low Haemoglobin and Platlets of 45 during a routine blood test. I had no symptoms and WBC was normal. PET showed i was fully loaded with CLL cells in bone marrow and all lymphnodes. I started treatment immediately with a 2 unit transfusion followed Obinutuzumab / Ibrutinib. I am now 6 weeks into treatment HB now 100 and platlets 98 with WBC remaining normal.

[Sojomama13]

Hi, My CLL had been mostly stable with the exception of the last 3 or 4 months prior to treatment. Although my numbers were doubling I was feeling pretty well. I had a routine minor surgery in November and started having issues with my platelets after that, although my wbc was elevated, but not alarmingly high. In January. My platelets went to 9000. My Doctor did a bone marrow biopsy and my results showed 98% infiltration. Needless to say, I began treatment right away. Due to the fact my platelets were so low, I did have several blood and platelet transfusions. Once my treatment kicked in, I stabilized fairly quickly. Today, I am doing great! I see my specialist tomorrow and I’m hoping to post after.

Best,

Sandy

[mickimauser11]

I think it is important to find out the cause Ig M Level? problems with the maturation of the cells so that they are Destroyed by your own immunesystem usually spleen and liver ? Are they enlarged? How about erythrocites? I had this problem and they used an antibody I had Obinutuzumab but some get Rituximab

[barger1951]

Aussie Neil seems to know what he is talking about....not much to add. I had a high WBC count over 250k , my platelete count droped to 18 and lymph glands were starting to really hurt. I soon-after started on Ibrutinib ( for about 2 years). I have been off IBR and all medication for two years and my lymphocytes are starting to go up (no real surprice). The doctor is concerned because of the lymphocytes going up. Odly for some reason, none of my other numbers have changed much. Long story short, it is the lymphocytes you have to pay attention to. My doctor also said " No treatmeant is a form of treatmeant" , all therapies have their drawbacks so you do not want to start until you have to.

My intuition told my I did not need the IBR after two years (also came off it for a medical procedure) total time off Ibr at that time was a month. While off IBR my numbers got better, so the doctor and I decided I could have a vacation from Ibrutinib. I was on a 420mg pill which should have been adjusted down to 110mg. The reason I mention this is that the doctors cannot know everything, so dont be afraid to use your own intution during this adventure.

No not panic as there is treatmeant for CLL and better ones coming in the future.

Cheers,

barger1951

[Gisygirl]

I have been on Imbruvica since 2014 and my platelets go up and down, mostly below the 150 low end of normal. My doctor said not to worry unless they go to 50. There is nothing I can do to keep them high.

[RefuahShlayma]

Hi there, This is just from my personal experience I feel so uneducated compared to Neil and all the other experts here.

About 18 months ago I was told at a routine appointment that my platelets had dropped to 6, way way lower than yours are. I actually did put it on this forum but I don't know how to direct you to it. Although I felt fine I did have bruises on my body, so it wasn't a huge shock that something was wrong. I was in hospital for about 5 days and had about 3 immunoglobulin transfusions as well as steroids for about 6 months. It was called ITP - Immunothrombocytopenia Purpura. My platelets went up and unfortunately my WBC also went up from the steroids. My WBC did go back down again to pre ITP numbers but now they are back up at 130 and platelets dropped to below 100 and I am soon starting treatment. No idea if this was at all helpful as my numbers were so much lower than yours. Wishing you an easy journey and good health