CLL leukemia: Just diagnosed, what can be done?

Hi Lori, My blood looked good, but positive for CLL. I'm at stage 0 (Zero). Monitoring with blood work every 6 months. No cure, but have excellent drugs if problems begin. Live normal life, except for blood work. I'm so relieved. After the call, talked with hubs and we decided to not make any changes in our lives. Just have the blood drawn as required and to live. That's all any of us can do. My best friend gave me a key chain with a medallion that says "A wise woman once said f**k this sh*t, and lived happily ever after. She said that should be my philosophy going forward. That works for me, I may not be able to beat it, but I'm lucky to have found it at level zero. Medical advances are being made every day, one of these days, it will be our turn. Until then we will carry on as best we can. Thanks for checking, I will keep looking in here for the days that are not quite so upbeat.

The gift your friend gave you had me giggling. I have the same quote on a little wall hanging. Exactly the right attitude to have because worrying about what the future will hold is just a thief of precious time.

I’m happy for you that the news was good and expected. Definitely pop in for an attitude adjustment or anytime for a visit. ☺️

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

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?

Now 8 or 9 years at level 0 and though I get a little tired at times CLL seldom crosses my mind, except when I have my semi annual check up. I did cut back on my golf game from 5 to 4 times weekly but I write that off to aging, now 72. The best advise my oncologist gave me was “enjoy life and continue to visit her every six months.” I’m good with that advise.

I am having blood work this week in preparation for my visit with my oncologist next week. I an so hoping to still be in Stage 0 snd have her tell me to go away and come back in 6 months. At this point, my cll is not affecting my life. Hopefully treatment will not be needed for many years so I can continue almost as if I did not have it.

I have had it for almost 11 years and so far  nothing but the pv i keep getting blood work for and on hydroxyurea.
On Tuesday, May 23, 2023 at 12:11:01 PM EDT, Mayo Clinic Connect wrote:

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I've had stage 0 cll for a year and was told I may not need treatment for many years. If you like, you can contact the cll society and have a free consultation with one of their expert doctors. He looked at my tests and gave his opinions.

One thing to be aware of though is that a person may not be considered needing treatment but they might still have treatments. I have heard about people of suffer from tiredness and lowered immunity due to cll but they are not yet on treatment. Also, I have heard of some people who have treatment and it doesn't help them much.

Thank you for this helpful information.

In fact, the effectiveness of traditional Chinese medicine (herbs) in the treatment of CLL is approached with caution in China. While some hospitals and doctors do emphasize that traditional Chinese medicine (herbs) can alleviate the suffering caused by CLL to some extent, the majority of CLL patients in China have not participated in the treatment involving traditional Chinese medicine (herbs)。good luck！