CLL America from Patient Power

I’m unclear what to think of my diagnosis

I’m new here and not clear about the diagnosis given on my Flow Cytometry, which classified me with atypical CLL, Mantle Cell Lymphoma, and Marginal Zone Lymphoma. Nothing was detected on my CLL FISH panel or the Malt1 FISH probe.

My onc staged me at between 0-1 and I’m on W&W. At diagnosis 18 months ago my symptoms were night sweats, fatigue, sore around elbow/forearm, slightly swollen spleen, my wbc was 20, and my alc was 13,900.

My onc/hemo, who says he sees a lot of CLL patients, said “we’ll just call it CLL”. I’ve asked him at my last 2 visits about the MCL and the MZL, but I’ve yet to get an adequate explanation.

I understand MCL is much more aggressive than CLL or MZL, and this concerns me. I have bright CD45, dim-mod CD 19, mod-bright CD20, partial dim CD5, and no CD23 or CD38.

Is there a specific test I should ask my oncologist for that would further define what I have and where my concerns should be?

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I am really sorry that no one has replied. Is there another one/hem you can give you a second opinion? I don’t have CLL, Hubby does. But I have had an illness that required me to get more opinions. (I had tachycardia that was not happening in the doc’s office). How often are you having labs done? Has there been any change? Better or worse? Your labs, I am not familiar with since my hubby has the 17pdeletion which is considered the worst. He is in 0-1 w and w too but has no symptoms except WBC a little out of whack.

That is about all I can think of. Let me know about your lab frequency.

Linda (Spacee)

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Thank you for reaching out to me Linda. I have my labs done every 3 months (at my request) and see my onc at 6 month intervals. My wbc is fairly low at 18, not too far out of the normal range. My ALC is at 14,500, which has climbed from the 10,500 at my dx 20 months ago. I’m feeling ok, mostly fatigue, but I just don’t push myself.

My biggest concern now is my additional diagnosis of MCL, I’m waiting for a CT scan and once I have those results I’ll be looking for an MCL specialist to see. I’m really concerned that my CLL onc isn’t answering my questions about all 3 findings from my Flow Cytometry testing, which was 18 months ago.

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It seems to me you are doing everything you can do. So, glad you are insisting on the labs every 3 months and the CT. Ok, and then have a MCL specialist give you his/her input. Yes, some docs feel it is their duty to not ‘alarm’ us by telling us all there is to know. So, we are really left to try to figure it out ourselves.

You are on a good path.

Linda (Spacee)

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Sorry for delay in responding but I have been recovering from thyroid surgery. When I was first diagnosed my hemp/Pnc seemed like it was nothing to be alarmed about. I then moved and he referred me to a great dr. Who takes his time to answer my concerns. If you feel you are not getting what you need from your dr. Get a second opinion. Did your dr. Do a bone marrow? For many years I went every 3 mos for blood work and have my dr check my nodes and spleen and liver. Keep me posted. I am starting treatment in 2 weeks a bit anxious. Best wishes Jo

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Thank you for your reply, I hope that your treatment goes well. I’m sure you are getting more nervous as the time nears, but what a relief that we live in the times we do where good treatment results are here!

To answer your question, my current hemo/onc has not felt a bone marrow biopsy was needed yet, even though I’ve had fatigue, night sweats, a slightly swollen spleen, and some joint & bone pain. I was just trusting him. Now that I’ve learned more about all this, and particularly the more aggressive nature of MCL, I know I need to change oncs. I’ve located what appear to be 2 good specialists at the university near where I live, so I’m processing my referral there now and hope to be seen in the next couple of weeks. They both specialize in MCL so I’m happy about that.

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Good luck and keep me posted on how you do. Glad you are going elsewhere. Good luck. Jo

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You need a definitive diagnosis. Mantle Cell Lymphoma is not the same as CLL. I would get a second opinion from a doctor who specialized in hemalogy, and specifically blood cancers (and even more specifically CLL). I suggest going to a reputable institution.

There are tests to distinguish Mantle Cell Lymphoma from CLL. See E.g., Mantle Cell Lymphoma Misdiagnosed as Chronic Lymphocytic Leukemia: Optimization of Diagnostic Approach, Fateh, J Clin Exp Oncol 2017, 6:6 DOI: 10.4172/2324-9110.1000200 (accessed at:

scitechnol.com/peer-review/...

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Thank you so much for your response and for the study attached.

I have been researching where to go next, as I obviously need to change from my current hemo/oncologist, to one that specializes & understands both CLL & MCL. My Flow Cytometry test (done 20 months ago) identified atypical CLL, MCL & and MZL, yet my current hemo/onc insists it’s all just put into one bucket and we should call it CLL!

I have just this week located 2 doctors at UCDavis Medical Center (very close to where I live) that specialize in MCL and I’m waiting for my referral to go through now. Hopefully I’ll have an appointment in the next 7-10 days and can move forward with a better diagnosis and plan.

I appreciate the article you sent, it confirms that the CD factors I have point more towards MCL. Thank you.

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I think it is great that you are getting an opinion from doctor who specializes in MCL. I would get all your medical records and organize them. I like to bring two hard copies to the dodtor's appointnent-in addition to keeping them in the cloud so I always have access to them. Good luck.

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Hello,

I am wondering how you are doing and how your appointment with the new Dr. went. Hope you were able to sort things out.

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