In Jan I hap a knee op torn Tendon and still recovering.
Had some Bloods done on 1st March and I had a lot of Abnormal results , Lymphocyte count went from 218k in August 2023 and on the 1st March 2024 to 245k.
Consultant wanted me to have another Blood test this week as an in between test as my next appt is not till the 15th April, Lymphocyte count now 284k.
Haemoglobin was always above 13.00 but on the 1st March 12.9 and today is 12.3.
I feel ok have a cough at the moment but apart from that feel fine. Neutrophils are 2.9 and Platelets 177.
Tried contacting Oxford but no joy so will wait until Monday.
Jules the flyer
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TheFlyer
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If your hemoglobin and platelets continue to drop, you will reach a trigger value to start treatment. A rise in lymphocytes alone is not a reason to start.
Hello Flyer, the decision when to treat with cll is typically made by your cll doctor using guidelines published by the international workshop for cll (iwcll). These are guidelines, not hard and fast rules, such that doctors are free to use their clinical judgment and experience to deviate from the guidelines. We are different with our cll. Guidelines like these are almost always arbitrary to a point.
Three of the more commonly discussed guidelines to treat are platelets below 100, hemoglobin below 10 and lymphocytes doubling in 6 months. I dont see you meeting any of those guidelines at this time. Looking at your trends over a few years would be more impt than labs done over a shorter period.
As to why these guidelines are somewhat subjective, and not binding on our doctors, consider the following example. Let’s suppose Jack has platelets of 105 while John’s platelets are 95. Does that mean John needs treatment and Jack does not? It depends, treatment decisions are not made in a vacuum.
If John was 80 years old and his platelets have hovered around 100 for years and just dropped below 100, his platelets might nevertheless be considered stable by his doctor and, also in light of John’s age, his doctor might watch him and wait and see if his platelets remain stable.
Now let’s take Jack who has platelets above 100. If Jack is 50 yrs old and in the last couple years his platelets have steadily dropped from 200 to 105, his doctor might well treat him now, even if 105 is technically above guideline. With Jack being 50 and with rapidly falling platelets, he will obviously need treatment soon, so why wait and take the risk his platelets get dangerously low?
Your hemoglobin and platelets are both near normal ranges and not that bad, at least compared to where mine were when I treated. They do appear to be falling, but they are still well above iwcll treatment guidelines. I would think your doctor would want to just see how your future labs go. No one can say based on the little info your provided. Your hemoglobin and platelets could fall below guidelines within the year, or maybe you could go five years.
Your lymphocytes have not doubled within 6 months. You did go from 245 k to 284 k in a month and a half, so that progression might suggest they are on pace to double in 6 months. But they might not, my lymphocytes sometimes fluctuated up and down from one month to next. I would assume when you see your doctor, he will want to watch you a bit more as you don’t appear to currently meet any treatment guidelines.
But to be sure, I am not a doctor or a cll expert. Even if a doctor on here did respond, I suspect he would be at a huge disadvantage to your doctor who knows way more about you and your cll, like how long you have had it, how old are you, how is your spleen, how are your nodes and how is your general health.
Sorry for the long winded answer that probably doesnt help you much. A shorter answer might have just said that your question, “is it time”, is very difficult to answer just knowing a small piece of the big picture of your cll. Good luck, I hope I haven’t confused you. Hopefully some of the answers you get from the community here will help you figure out the right questions to ask your doctor who is in a way better position to predict your treatment time.
Hello Flyer. It is a shock to our system when it's time. I felt like I was going to have an emotional breakdown when the box of Zanubrutinib was delivered. I am, of course, grateful for the modern miracle of medicine, and access to the best medical care in the world.
I'm wondering if you have swollen lymph nodes and/or spleen? My situation was similar, having been diagnosed in October 2014. I was stable until the Fall of 2023. It felt like, suddenly, numbers increased and spleen enlarged to almost 19 cm. I didn't feel that bad, but an ultrasound confirmed multiple enlarged lymph nodes and spleen.
I started Zanubrutinib almost two weeks ago. The first couple of days felt like having a mild hangover. I now have more energy and feel better than I have in a long time. The lymph nodes in my neck have flattened out, and I no longer feel like I have swallowed a cantaloupe.
You are tough enough! You are strong enough! You can deal with treatment and keep flying free! You've got this, Flyer.
I was about in the same place as on WBC and falling blood numbers which pushed me into treatment. Now comes the best part having so many options for treatment when you get there. Blessings.
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Time to start treatment?
Just joined the group so here we go with my question
Time to say goodbye.
What can I expect from my appointment with hematologist
