CLL leukemia: Just diagnosed, what can be done?

Posted by kegraves @kegraves, Jun 6, 2022

Husband 84 just diagnosed with CLL,
Is this common in older people and what things are done to stop from progressing?? We are new to this site and this diagnosis..

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Lori, Volunteer Mentor | @loribmt | Apr 24, 2023

In reply to @dorphy82 "Greetings. Appreciate having this forum for comment and assistance. My initial CLL diagnosis was in 2014..." + (show)

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?

dorphy82 | @dorphy82 | Apr 24, 2023

In reply to @loribmt "Hello @dorphy82, Welcome to Mayo Connect…as you can see you’re not alone in your journey with..." + (show)

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!

aleeab | @aleeab | Apr 27, 2023

In reply to @loribmt "I can sure relate to that feeling of being betrayed by your body or DNA. Believing..." + (show)

@loribmt

I can sure relate to that feeling of being betrayed by your body or DNA. Believing I did everything possible to avoid cancer it never occurred to me to consider a blood cancer! But I hit the jackpot with Acute Myeloid Leukemia. In my case it was aggressive and the odds weren’t in my favor. Here I am, 4 years later, in an enduring remission and living my best second life!
I want to encourage you to not throw in towel and feel this is a “get your affairs in order” moment…though it is always a good point to not leave that until it’s too late. But this isn’t a ‘too late’ moment. ☺️

Should you require treatments, CLL has a number of very promising options which help slow the progression of the disease in early stages and to help put a patient into remission.
As for finding the cause, sometimes there seems to be no rhyme or reason to these blood cancers. In my case it was a random event. All of my oncologist hematologists have said the same thing, that I’d drive myself to distraction trying to determine a cause. It can be something as nebulous as a stray gamma ray that set things in action. ‘Stuff happens”

So, when a cancer like this happens, the best thing is to get the news, face it head on and deal with events as they happen. Worrying about ‘what if’s’ saps strength and robs you of precious time. I’m a firm believer in “if-then”. If something happens then I’ll deal with it. That has helped keep anxiety to a minimum and allowed all my treatments to work for me. They will for you too!

You were in the army, so you have an inner strength that you learned to tap into all the years you served. If those skills are rusty, I’m betting they’ll have muscle memory and rise to the occasion when called upon. You’re going to get through this and if you need a perky, annoying cheerleader, I’m your person!

Now you need a distraction until the 27th…how’s your sock drawer looking? 😉

Jump to this post

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.

Lori, Volunteer Mentor | @loribmt | Apr 27, 2023

In reply to @aleeab "Sock drawer remains a mess, however the weeds I call lawn are beginning to look great...." + (show)

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?

Lori, Volunteer Mentor | @loribmt | May 3, 2023

In reply to @aleeab "I have phone appointment on the 27th. The second blood test (IGH SOMATIC HYPERMUTATION ANALYSIS, B-CELL..." + (show)

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?

aleeab | @aleeab | May 3, 2023

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.

Lori, Volunteer Mentor | @loribmt | May 3, 2023

In reply to @aleeab "Hi Lori, My blood looked good, but positive for CLL. I'm at stage 0 (Zero). Monitoring..." + (show)

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. ☺️

aleeab | @aleeab | May 21, 2023

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

Lori, Volunteer Mentor | @loribmt | May 21, 2023

In reply to @aleeab "Hi Lori and everyone. It has been a while since I checked in and thought I..." + (show)

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?

carl50 | @carl50 | May 22, 2023

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.

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