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CLL leukemia: Just diagnosed, what can be done?
Blood Cancers & Disorders | Last Active: Oct 25, 2023 | Replies (187)Comment receiving replies
Hi Lori and everyone. It has been a while since I checked in and thought I would share some observations I have made and stuff I have learned on my own. The CLL is still at level zero, "we're going to watch it". While I am not comfortable with the wait and see, it is what the doc decided. Sometimes I feel like saying if your candle caught your curtains on fire, would you wait until the house was on fire before calling the fire department?
I have been moving around outside since it stopped raining so much (Oregon coast) and I get tired faster than just sitting around all winter would indicate. I have about 450 feet of fencing around the weeds I call lawn. I use an electric string trimmer to keep both sides of the fence line cleaned out of greenery. In the past, I can do one side one day and the other on the next day. Then down both sides of my dirt/gravel drive. After a week of working, I have not gotten all the way around the outside of the fence. After about 2 hours, I'm so tired it is all I can do to get back inside. I'm seeing my doc tomorrow and will ask him about that.
Am I just using this CLL diagnosis as a crutch to stop working so hard or is this my life now? I just don't know and it worries me. I don't want to sit around gathering strength to do the outside work, the inside work. I want to paint this year, how long will it take to do that? All this is making me wonder if the watch and wait treatment is good or should I demand some kind of treatment. If the drugs are so good, would we not be better served to take them now and maintain this level zero? Don't know, another question for the doc. I have quite a few. Wishing you and the group a safe Memorial Day weekend and upcoming summer. AleeaB
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Hi @aleeab! I just spoke to another member this morning who has a different blood condition and is also in watch and wait mode. It’s pretty much like waiting for the other shoe to drop.
Your candle/fire analogy is good though you’re assuming the curtain immediately ignited into a roaring blaze. Let’s just say, at this point you have a candle near the window and there’s a gentle breeze blowing the curtain. The candle is smoldering but hasn’t ignited yet. The potential is there but the risk level minimal.
According to the CLL Society, “ There is no evidence that early treatment is of any benefit in chronic lymphocytic leukemia (CLL).”
There’s no clinical reason to start treatment before it’s time. These medications can have their own risks, though they are very good at slowing the progression of the disease when it begins to proliferate.
https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/
Unfortunately, fatigue is a side effect of CLL. You’re not using this as a crutch at all. This fatigue will become a companion. It’s important to listen to your body and make adjustments. Your life is changing but it’s not over!! It’s just different.
Chores will take a little longer so you’ll learn to pace yourself. Honestly 2 hours of using a string weeder is pretty aggressive. Maybe aim for 45 min or an hour tops, then take a break. I know I sound like Pollyanna, but I’ve lived through all of this with AML. It was aggressive and I didn’t get the option watch and wait. It came on like a locomotive within 3 weeks. The adjustments were massive. There is a period of mourning for what life used to be. But it doesn’t mean a productive and enjoyable life isn’t ahead. We have the ability to accept, adapt and move on.
Have your list of questions ready for your doctor tomorrow. It helps to have these on your phone or written in a little note pad. Knowledge is power so don’t hesitate to ask for clarification.
I hope you have a safe and enjoyable holiday weekend ahead! We’re heading up north to our cabin. Our daughter, her husband and pupper are joining us up there for 4 days! Haven’t seen them for months so we’re looking forward to a few corn hole games and good company!
If you don’t mind, I’d like to hear what you learn from your doctors appt. Touch base after your visit, ok?