CLL with lambda monoclonal gammopathy

Hello @linepa2002 Welcome to Connect. I’m happy to see you’ve already discovered some helpful posts with the diagnosis with your CLL. It’s generally a slow to develop blood cancer and medications can help to slow the progress.

Here’s a little information about Chronic Lymphocytic Leukemia.
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
Looks like, also tossed in with the CLL, is a condition referred to as MGUS, Monoclonal gammopathy of undetermined significance. That’s mouthful! Instead of me trying to explain this condition, I’ve found a couple of good articles that will give you a little more information:
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
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https://www.hopkinsmedicine.org/health/conditions-and-diseases/monoclonal-gammopathies
Both of those conditions are often found randomly after routine bloodwork. You mentioned so many members were suspected of CLL after a mammogram. The mammogram didn’t cause the CLL to happen. It’s common for women with CLL to have lumps in their breasts investigated after a mammogram. Another random discovery…

Were you experiencing symptoms before you were diagnosed or was this found with a routine physical?

I have no symptoms and did not have any just routine blood work and next thing I know my G/p had me at a oncologist. How was often do most people get labs? I was getting labs every 2 weeks until the last 2 draws than 3 weeks now 4. Thank you for your time and your help.

You can be assured that it’s a positive sign when your oncologist is giving you a longer leash on blood work. The initial testing every two weeks set a baseline to check the possible progression of your blood condition(s). Now that you’re up to 4 weeks between labs, your hematologist is comfortable that your blood numbers are stable…so you can be comfortable too. Just go about and enjoy life! I know the feeling…my leash is extended to every 3 months. ☺️

Don’t let the ‘watch and wait’ influence your daily life. It’s like those weather forecasts of a storm watch…sometimes they never even develop and all the concern is for nothing. What are you favorite activities to enjoy?

You sound like my oncologist he said the same thing as you, you may not never need meds but you need to be followed with blood tests. I see my lab results and think this is bad but my oncologist says I will tell you when it is bad and when we should worry until than if ever, just be happy.

You lifted my spirits. thanks.

Are there any oldies on here besides me??????

I’m happy I could lift your spirits! I’ve had more bloodwork in the past 4 years than most people have in a lifetime so I’m pretty familiar with the whys and whats! 😊 You sound like you have a really great doctor and he’s right, he’ll be the first to know and can do the worrying for you. My oncologist said the same thing…he and his staff will do my worrying, I should just get on with life. And I am! In fact I just had my 4 year follow up after acute myeloid leukemia and a bone marrow transplant and my doctor said I’m one of the healthiest patients in his practice. So that made my day!

As for oldies?? I prefer to call us women of age…and men too! I think quite a few of us in the blood cancer groups are in our late 60s to 90s+ so you’re sure to be talking to any one of the members in our support groups at some point. Some members state their ages but honestly, most of these diseases strike us at any stage of our lives so we’re all over the place with life experiences.

To find other members with your similar diagnoses, when you are in the Blood Cancer Support group, you can type in the little search box words such as CLL or MGUS, a whole list of discussions will pop up with those words highlighted. You’ll be able to pick and choose the conversations you’d like to read. If you want to reply directly to one of the members, simply click the blue reply box in that post and it will automatically notify that person. Or, you can also make sure a person sees the post by including their @name.

A couple of other non-health groups that are fun:
~What’s outside your picture window today?” https://connect.mayoclinic.org/discussion/whats-outside-of-your-picture-window-today/

~What are you reading?
https://connect.mayoclinic.org/discussion/what-are-you-reading/
~Let’s go walking. Join me for a virtual walking support group!
https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/
~Music Helps Me
https://connect.mayoclinic.org/discussion/music-helps-me/
~Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing/
Have you perused any of these groups??

I was diagnosed 2 yrs ago after a routine mammogram with stage 4 CLL Lymphoma. Blood work and Ct scans every 6 months at this point unless I start having symptoms. I’m 70. Just going about my normal routines feeling lumps in my neck armpits and groin. Waiting for them to get 10mm before the drs do anything or I develop other symptoms. It’s a bit unsettling. I get a lot of anxiety and stress over it.

Is the swollen nodes a part of cll? So far I have not notice any with me. I had covid in Nov. was hospitalized for 5 days, only temp of 103.8 and freezing cold, than 2 weeks later had a slight heart attack and a stent put in, I n Dec. I had to have my Aortic valve replaced, This was a issue I was born with but lasted me 81 years until it needed to be replaced. I was diagnosed with CLL June of 2022 and often wonder did this cause these problems?

With CLL lymphoma yes. They also started after my Covid vaccine too.

It is unsettling to have a ‘watchful waiting’ situation, isn’t it? Feels like a ticking time-bomb waiting to go off. But we can’t let that get the better of us. It’s not going to explode…it’s more like a balloon fizzing out slowly. No big pop!

You’ve already been diagnosed with CLL. The diagnosis of any disease is usually what impacts us the most. After that, we deal with the fallout. CLL is generally very slow to develop and as you’ve experienced, it is often found by accident through a routine physical, blood work or mammogram where swollen lymph nodes are discovered.

Your doctors are waiting to begin treatment because studies have shown that early treatment doesn’t change the course of the disease. So instead of going on meds sooner than you need them, they are delayed until your doctor feels they are medically necessary to stop the progression of the disease. As long as you’re not having any symptoms there’s no reason to treat at this time.

If you’re worried about the treatments, there are several options depending on the character of your cells. I know the word ‘chemo’ instantly strikes fear in a person. I’ve been through many rounds of chemo…it’s something we need to face head on if it’s required. My aggressive blood cancer was 4 years ago and I just had my checkup at Mayo 3 days ago…I’m in an enduring remission and feeling like nothing ever happened.
There is life on the other side of chemo. So I encourage you to just live life to the fullest every day and put this CLL on the back burner. Keep up with your routines. If you’re on a 6 month schedule for blood work, that tells me that your doctor isn’t expecting this condition to proliferate any time soon.
When was your last set of scans and blood work?

@elissams143 and @linepa2002 Since CLL is very slow to develop. In all likelihood, it had been going on years before you received the Covid vaccination. Correlation is not causation.
However, Covid is an insidious virus, whose long term side effects are now causing myriad complications in lungs, heart, brain, joints, skin, bone marrow, etc., so while it’s possible your cases of CLL are related to this, there’s no way to be certain.
Unfortunately, aging, exposure to chemicals, radiation, pollution, contaminated foods, molds, etc.. also have the ability to cause similar inflammatory or cancerous issues. And sometimes, as my oncologist told me when I wondered how on earth I ended up with AML…”Sometimes S**t happens and you’ll drive yourself crazy trying to figure out the cause.” I trusted this man with my life so I’m going with that…there was no assignable cause.

If I can share with you my philosophy, I never worry about ‘what ifs’ because it’s a thief of time and causes anxiety. Each day is a gift so try not to worry about ‘what if this happens’. If/Then is a better choice. If something happens, then I will deal with it. Until then, focus on positive things. Eventually they will push out the negative thoughts. What brings you joy each day?