when to treat?

[Mijoj3112]

diagnosed in 2014 platelets now 68 with no other symptoms other than high wbc . Feeling healthy. When should I take treatment? Doctors have provided further information.

[AussieNeil Partner Administrator]

The latest (2018) version of the iwCLL guidelines updated the platelet count indication for starting treatment to include the sentence I've underlined;

1. Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. Cutoff levels of Hb <10 g/dL or platelet counts <100 7*10^9/L are generally regarded as indication for treatment. However, in some patients, platelet counts, <100*10^9/L may remain stable over a long period; this situation does not automatically require therapeutic intervention.

My platelet count dropped to the low 50s prior to when I started treatment then dropped under 30 before recovering. Platelet transfusions when you have CLL, are recommended when the count drops underling 20 if you have an infection, otherwise it's under 10.

Given the lack of guidance with respect to a lower limit in the guidelines, I would suggest the answer depends on your overall health, along with consideration of how your recommended treatment is likely to affect your clotting effectiveness. BTKi drugs have an off target effect on platelet counts, for example.

Neil

[Mijoj3112 in reply to AussieNeil]

Thanks for taking the time to respond.

Jim

[Etheldreda]

That is the funny thing about CLL, there isn't a clear line at which treatment starts. It can be very frustrating. You've had a good long watch and wait! 👍🏻I had to start treatment when my hemoglobin dropped below 90, and I should've started a bit earlier because it took a while for my hemoglobin to stabilise and go back up. My doctor was never terribly concerned with low platelets. What is your hemoglobin?

[Poodle2 in reply to Etheldreda]

I had the same experience...when other blood numbers start to drop, it means our bone marrow is compromised to a point that it is starting to fail. All your counts will drop when you start treatment. If your numbers are low but close to the normal range numbers, you will probably find the whole process easier. When they drop and they were already really low to begin with, everything gets a bit more difficult. I had the same experience like Etheldreda , I started treatment when my Hb was around 86-88. I wish I had started a bit earlier, as the last few months were horrendous anyway and I can't say I enjoyed w&w at that point. My platelets dropped from around 100 to 60 so quite a drop - they recovered very quickly, unlike the Hb. Like others have mentioned already, I would like to see the trend of your platelets, stable or slowly going down? All the best.

[Mijoj3112 in reply to Poodle2]

haemoglobin has been steady around 114 Canadian measure.

[Jm954 Administrator]

You can happily live with platelets at that level but the guidelines make an important point. Are you platelets stable around that number or trending slowly downwards? That will make the decision.

[Mijoj3112 in reply to Jm954]

Feb 8th platelets 62

Mar 7th 93

May 30th

June 19th 68

Canadian measure

Thank you all for your care and concern….we need some at this point….Doctor not that helpful.

[seelel in reply to Mijoj3112]

These are fluctuating numbers rather than a continuous downward trend.

I have seen similar numbers in my own blood tests but remain untreated at age 77 and 18 years of W & W.

It may be prudent to continue with observation until there is more definitive data on which to base the decision to treat.

[Jetliz]

My platelets have been trending down well over a year and this year have gone down faster. 87 February 50 June so I've been told 30 is the figure for treatment and it will be steroids if they fall again to that. All other numbers stable and feel well in myself. Can't quote any other bloods my NHS app is down at the moment and paper records at home. Hope this helps. Forgot to mention enlarged spleen I'm guessing that's also taken into account.

[MisfitK]

Since you didn't provide any blood trends, it's hard to tell you "yes, it's time to treat" or "no, it isn't". With your platelets at 68 now (which is far below 100) and what you call "high WBC" (so I'm assuming it's at least 100K, if not 150K), yes, this would be a time to treat if all a doc had was this one look.

But, if you posted your last 3-4 blood works with all your numbers, posters could give you more certainty one way or the other.

[scryer99]

I had declining platelets down to about that level. My oncologist indicated that 80s was OK but if they continued to decline and got "too low" that this would be a treatment trigger. I was not given a specific number but I got the impression 50 would have been about right.

As it turned out, high ALC caused spleen issues in my case which led to treatment start. My platelets did drop a bit at treatment start but have gradually recovered since.

[Mijoj3112]

Thank you. I appreciate your input.

[Islandvibes]

I believe it must be extremely difficult to be on watch and wait, but taking the drugs r not benign. I believe I could have been started on drugs way before I needed . I now have foot neuralgia , I think it has effected my joints ( just had shoulder and getting knee surg injury ) although I do have arthritis which has been more aggravated for past few years. Ibrutinib much more SE . Zanu mostly knee pain . So if can avoid starting do that. Get the second opinion from CLL SOCIETY

[Mijoj3112]

Thank you for your input. and we hope it works out for the best.

[Phil4-13]

Mijoj3112, I'm 75, diagnosed 4 years ago, my WBC is now 164 and I feel fine. My doctor (and me, too), are keeping an eye on my platelets and RBC and all those immunoglobulins which help fight infections. So far, still in W&W and feeling fine. Some lymph nodes have enlarged and it is sometimes uncomfortable after I eat because my spleen has enlarged. I am careful in crowds to avoid infections and eat smaller portions at meal times. I'm disciplined to do some exercise every day, make sure I include good nutrition in my diet(I do love chocolate and coffee!), keep hydrated, and keep up on the latest CLL updates through this forum and the CLL Society website. 😊Sandra