Platelets and starting treatment

[Carrievc]

Hi All,

Hope everyone is doing well today. I recently had blood work at my GP for my yearly routine check up. Looks like my platelets dropped to 131 from 151. Does treatment need to start if platelets continue to drop or are there other factors. Was wondering because all other bloods look fine:

WBC 24.4

RBC 4.11

HGB 13.4

LYMPHS 79

PLATELETS 131 PREVIOUSLY 151, 150, 151, 177, 176, 154

ABSOLUTES:

NEUTROPHILS 3.7

LYMPHS 19

THANK YOU ALL

[RanaDre]

Hi Carrie - When my platelets dropped from 167 to 114 I discussed this with my CLL doctor at Mayo Clinic who advised that when the platelets fall to 90 I will have to be watched "more closely."Currently, he orders blood work every 90 days. There are other aspects of the clinical picture to be considered as well, but with respect to platelets he isn't concerned at this point.

[Carrievc in reply to RanaDre]

Thank you RanaDre

[cajunjeff]

Platelets dropping below 100 are but one criteria used to determine if treatment is needed. Top Cll doctors look at the whole picture and use treatment guidelines as just that, guidelines, not hard and fast rules.

If someone’s platelets dropped from 200 to 100 in a couple months, that drastic drop would suggest that platelets are plunging and treatment should begin sooner rather than later so as to start treatment before platelets become dangerously low.

If someone’s platelets dropped from 200 to 100 gradually over ten years, and their platelets were relatively stable at 100 and all their other numbers were normal, a doctor might feel more comfortable just keeping an eye on platelets and see how they do. Platelets can bounce around a bit and even go up now and then, but for most people with Cll, platelets will gradually fall over time.

You will probably hear from a number of people on here who stayed on watch and wait for a couple years as their platelets hovered around 100.

Your drop in platelets seems to be more gradual than sudden, so my amateur guess is that your doctor will continue to monitor them before starting treatment.

[Carrievc in reply to cajunjeff]

Thanks Cajunjeff. My GP was panicking when she saw the #. I sent to my CLL specialist and seemed not concerned as well at this time. Appreciate your response.

[CycleWonder in reply to Carrievc]

My GP panicked the first time she saw my absolute lymphocyte numbers. I had to assure her the CLL specialist was aware but it wasn’t time to treat yet. My GP wrote a letter to my CLL specialist who called me in for an appointment just to reassure me that all was OK!

[Carrievc in reply to CycleWonder]

Thank you for your response CycleWonder. Yes my GP was having anxiety.

[patagozon in reply to Carrievc]

I get a chuckle when my GP orders a CBC and the WBC comes back at 350K. I picture all these red lights flashing and sirens sounding in the lab as they call me on the phone to let me know my counts are a bit high.

[AussieNeil Partner Administrator]

My platelets dropped below 100, five years before my treatment. The latest iWCLL guidelines allows for platelets to fall below 100 provided they remain stable. It's in part about treating the patient, not the numbers.

Neil

[Carrievc in reply to AussieNeil]

Thanks Neil. Appreciate your response

[Strech51]

Hi Carrievc. A month ago I had platelets down to 85 as well as some other bloods going in the wrong direction. Latest blood results showed platelets back up to 131 and other bloods recovering to a good level. My CLL Consultant is not concerned about the results as the trend is OK. I do realise how worrying it is when the blood results show the unexpected. A month ago I was in panic mode but the guys on this site calmed me down. By the way your bloods seem good compered to mine and I have been told that mine are OK and not anywhere near needing treatment.

Steve

[skytortoise]

Hi Carrie, my platelets dropped suddenly from 160 to 91 just after I had my first Covid vaccination. Other blood readings also went haywire. Platelets have now recovered to 115. My blood lady said not to worry, so I'm not. Stay well. Freddie

[morepork]

Hopefully Carrie all those answers you've had will be reassuring. My platelets are currently at 75 - bounce between that and about 85 and have done for years. they weren't the reason to finally start Ibrutinb though. 😊

[Carrievc in reply to morepork]

Thank you for replying. Yes I love this site and always my go to. I appreciate your response and fingers crossed with Gods grace, I will continue on the W & W path for awhile .

[Hidden]

Hi CarrievcHope you are well~ I just posted a similar post about my husbands platelets trending down (126 now) All other numbers similar range to yours.

Specialist said 2 days ago to "get his abdomen scan done", since he has put them off for 2 years since "nothing would be done w/how his numbers are at the moment". He fears covid tremendously due to his Dad passing 1 month prior to his diagnosis of CLL.

She said treatment "may be in his near future" but she is not worried so we should not be. He is getting scans and new bloodwork next month.

My husband has enlarged neck nodes, no symptoms.

I have been wishing for CLL to be treated (on 1 hand) & then on the other, apprehensive suddenly about this. Specialist we have is fabulous & I do trust her.

I also know that everyone here has been responding to my post about platelets/spleen w/many success stories (in case you want to look at my last post).

Be well, not sure this helps except for knowing you are not alone~

Cookie

[Carrievc in reply to Hidden]

Thank Cookie341. I appreciate your response. I haven’t had any scans to date with no enlarged nodes so far. May your husband continue in good health.

[Hidden in reply to Carrievc]

You are very welcome!

Thank you so much~ You will be fine, we all will. None of us are guaranteed healthy vessels thays for sure. The treatments are truly fortunate. I use to be so anxious about so many things & I learned mindfulness around the same time I found this site. I can't put into words how important this forum family has become to us.

Take great care & enjoy your weekend!!!

[Carrievc in reply to Hidden]

I agree. This sight is a Godsend. I just love it and the people.