CLL leukemia: Just diagnosed, what can be done?

Hello @dorphy82, Welcome to Mayo Connect…as you can see you’re not alone in your journey with CLL. We have several members who are along the same path with you.
Our forum is made up of members just like you who come together for support and encouragement, so we can’t diagnose or offer treatments.

The Mabthera you were taking appears to be the standard treatment for CLL in Europe so I’m not sure why your doctor has delayed the therapy. It may be something as simple as a rest period to allow your side effects to subside.

Have you been able to ask your doctor why there is a delay?

Thank you for your response and support Lori. My oncologist simply admitted she does not know what treatment to pursue that will help me ...... I will start leukeran in July (which I also had in 2014), if that doesn't help, will try chemo and finally radiation. I am very active physically, the only symptom at present is a swollen abdomen. I do not expect a further diagnosis or treatment suggestion, simply would appreciate knowing what other members have tried with success ..... i.e. in 2014 I went on an extreme health regime taking Barleygreen, ginger, curcumin and fresh juices, etc but find the juicing time-consuming ......thanks again for your prompt response! Have a good day!

Sock drawer remains a mess, however the weeds I call lawn are beginning to look great. My new weed whacker is great. The doc called this afternoon. All the blood tests confirm CLL. Prognosis is good, my Stage is Zero. He will order same blood tests every six months to monitor my situation and that I am to live my normal life. I gotta tell you my relief level felt like I hit a home run. I think I will sleep well tonight, no waking up wondering if I am really ill and just in denial. I will keep an eye out here, but probably won't have a lot to say. I am so fortunate with this diagnosis, I will keep others in my prayers. Thank you for the kind words, understanding and patience.

Ah, there’s nothing like holding your breath, for what seems like months, and finally being able to exhale! I’m relieved right along with you that the news is good. Being at Stage 0 CLL and having bloodwork only every 6 months is a good indication that your doctor isn’t anticipating anything to raise eyebrows anytime soon…maybe never.
So, skip sorting the sock drawer and keep up with your lawn. That’s what people see anyway. 😅
Looking forward to followups from you. It’s always encouraging to anyone newly diagnosed with CLL to see the positive news like yours. Don’t be a stranger, ok?

Hi @aleeab, I just wanted to drop in to see how you’re doing. You were going to have a phone appt with your doctor on April 27th. Did you find out anything new?

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.