mlus and ct

[Msmilley]

Hello, I have posted before that I have mlus that comes and goes. I see hematologist every six months. Yesterday he said he wanted to do a ct scan with contrast of chest, abdomen and pelvic area to check for early lymphoma. I had gotten used to the mlus and would get nervous every six months for labs but for some reason this has me really scared I have two hemangiomas on liver that we will look at to to verify . I know this wouldn’t be a big deal to most of you but I just need to vent to somebody who may understand my fear of looking further. I was upset because usually after my visits I can not worry about it for six months but this gave me a big worry. Thanks for listening.

[AussieNeil Partner Administrator]

I see it was 2 years ago when you last mentioned MLUS (Monoclonal B-Lymphocytosis

of Undetermined Significance); healthunlocked.com/cllsuppo... I think that's an older term for what is now simply called Monoclonal B-cell lymphocytosis (MBL), which I expect Jm954 could confirm.

What you are experiencing is something most of us also go through, if we are honest, as covered in this post. What is “Scanxiety” and How Can I Manage It?

healthunlocked.com/cllsuppo...

As Len lankisterguy shared with you 2 years ago, " The lymphocytosis in MLUS is virtually non-progressing. These patients are clinically silent and undergo a completely benign course." That's definitely the case with low count MBL, so having a normal lymphocyte count at your last blood test should be reassuring. A few percent of people with CLL/SLL have the Small Lymphocytic Lymphoma presentation, which looks like MBL, but the CLL/SLL cells can accumulate in the nodes, spleen and bone marrow. In addition to checking the status of your hemangiomas, your scan will also determine whether your MLUS/MBL might be SLL.

It's strange how we can be (reasonably) relaxed about hidden health conditions, but then we get anxious about them when a doctor checks what's happening, even though that enables better management. Sounds like your specialist is looking after you well.

Neil

[Msmilley in reply to AussieNeil]

Thank you for responding Neil. You are right about scanxiety! I was hoping to go to my six month check up as usual and move on for the next six months. My cbc was all normal. My flow cytometry was 1.8% monoclonal b+ cell.. I knew low cell mbl had very small chance of progression but I don’t know about sll. They did check me physically for nodes. I’m scared of the possibility of hidden nodes . I should be so thankful I’m not dealing with worse things but right now my mind is going there. I’m glad he is proactive . I won’t rest until I know the results. I did read your profile and what you have been through. I appreciate you our knowledge and that you are here to support others. Thank you for your time.

[Jm954 Administrator in reply to Msmilley]

I think you're getting very good care, most doctors probably wouldn't order a CT scan with just 1.8% monoclonal B cells. I don't think there will be anything significant but let us know the results and we can celebrate the good news with you 😊

Jackie

[Msmilley in reply to Jm954]

Jackie, thank you for responding. I was surprised he wanted a ct myself. He said he wants to be sure there is nothing else going on he did mention mantle cell lymphoma which scared me. He said I don’t expect to see anything but just to be sure something else isn’t going on. But it does cause stress. Thanks so much and I will report back.

[Jm954 Administrator in reply to Msmilley]

Mantle cell lymphoma is diagnosed similarly to CLL and MBL: by flow cytometry so the CT scan won't help there but it's still good to get a baseline CT.

[Msmilley in reply to Jm954]

That’s good to know. That was the line that put the fear in me. The flow says lambda monoclonal cd5 positive. I didn’t realize that was how it was diagnosed. That helps alot. Thank you!

[Ladylin151]

If it helps your frame of mind, my hubby has the Sll presentation of cll. He was diagnosed in 2016 and already had many nodes all over his body although there were none that you could see. He didn't need treatment for 5 years and when he did, he didn't miss any work and had only one day of feeling ill. Now again, he is living life exactly as he wants to and is back to 6 mos/uneventful appointments. We are grateful and happy and busy and blessed. I wish all of that and peace for you going forward.

[Msmilley in reply to Ladylin151]

Ladylin151 thank you so much for that info. It does help me calm down. It’s so helpful to hear other peoples situations. I will be able to keep that in mind if there are nodes found. Thank you for responding and being so kind . I’m so happy your husband is doing so well.

[BigDee]

Hello Msmilley

I am facing something similar in upcoming tests, but I personally what to find out issues as soon as possible to determine possible medical intervention. You cannot fix it until you know what it is. Blessings.

[Msmilley in reply to BigDee]

BigDee you are right about that. It is good to find out what’s going on. I don’t know why I get so scared of what may turn up. It’s the unknown I guess. I will be saying a prayer for your upcoming tests. Thank you so much for responding to me.

[MelloYellowMe]

I am sorry that you are scared, I know how hard it is with health issues. It is scary facing unknowns, or truths, but I really like how proactive your Dr is, and is doing the CT to catch anything early, because having information gives you the best possibility for best care and positive outcomes. That’s really good, and I hope you can feel reassured that you are in good hands with your Dr to manage your care now and in the future. I pray it stays benign and never progresses. But one thing I do know for sure, is that fear, worry, and stress raise your lymphocyte count, which could make things look like they are not, or in some cases can make cancers progress faster. I had extreme stress last year and truly feel it made my cancer progress faster and become more aggressive. Even now during treatment when I have stress, I have worse or returning cancer symptoms. Try your best to meditate, take walks, do anything that helps you keep your stress levels down. I am working on this myself, and it is hard, but it’s a necessity. You are really in a good position, try and celebrate that for now. None of us can control the future, just take one day at a time and try to enjoy it. Here’s my flow test before I started treatment. And my lymphocytes could have been way worse. I am unmutated CLL and cd38 positive which most unmutated have. 44 years old with 5 kids and youngest is a 5 year old, oldest in highschool. Doing treatment and my night sweats improve for 10 days then return daily again. Not sure if it’s just not the right treatment and not as effective for me, or if it’s resistant, or if more going on. I go anaphylactic to contrast, so we only can see what we can, and we always know, more might be going on that we can’t see. It sucks. We saw lots of lymph node tumors in my neck and chest, so far they all looked small at 1cm, but we know in my abdomen there must be a mass or lymph nodes blocking one of my kidneys, but they cannot make it out on my scans or mri. Can’t tell between bowl loops or lymph nodes. But I have hydronephrosis in my kidney. I’m sure we will repeat scans soon, they use ct without contrast, mri, and ultrasound to try a piece a picture together. But the hope is that the meds shrink it all and get me in remission. I’m not thrilled with all this going on, but I know there are many that have it worse. So all I can do is be proactive and take one day at a time and deal with what I have going on to have the best outcome. Try and keep my mind positive and environment calm. Your flow test sounds really positive and reassuring. If you feel well enough, that’s a really good sign too. Clinically of how you feel tells more than scans and tests. Keep your body as strong as you can too. Wishing you the best. 🙏

Flow test

[Msmilley in reply to MelloYellowMe]

Thank you so much for responding MellowYellowMe. I know that trying to calm down is a necessity. I have always been such high anxiety when it comes to health and feeling out of control. My mind goes to worst case. I need to control that better. I am glad my Dr is proactive. I’ve read what you are dealing with and I know it’s hard and frustrating. Your post helped me to focus on taking things one day at a time. How long have you been in treatment? Praying for you to hit remission.thanks for your kindness and sending you positive thoughts. 🩷