Help!!! Incorrect diagnosis???

I had a nodal biopsy in January that said I have SLL, it was confirmed by two different doctors. My dr is at MD Anderson and ran every test under the sun. He told me I have stage IV SLL. I then decided to seek treatment closer to home and went to OSU James cancer center where I was told by a Leukemia doctor that I have CLL stage 1. While I understand the two are treated essentially the same and in many ways it doesn't matter. It matters to me that there is a disagreement, MDA dr specializes in lymphoma. My lymphocytes were elevated for three years prior to diagnosis. I presented with no B symptoms and diffuse lymphadenopathy. Swollen neck nodes appeared in October of 2016 and continued to increase to 3 x 2.5 cm so not huge, I stopped trying to count swollen nodes in neck as it was a bit overwhelming, not large in size, but both sides. When I went to OSU dr, he did not agree with rituxin, imbruvica combo that my dr prescribed.

Thoughts on if it matters which "arm" of disease I have, CLL or SLL? Could it simply be the difference between a lymphoma specialist opinion or a Leukemia specialist option? I asked each dr why they felt it was "their" diagnosis and CLL doc said, no one looked at my blood work before DX. SLL doc said the biopsies indicated SLL

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  • Appreciate that there's a continuum in how CLL/SLL (same disease) presents in the nodes (lymphoma) and blood (leukaemia), from bulky nodes and little blood involvement, through to high blood involvement with far less nodal involvement. Historically, (before the cell DNA of CLL and SLL was found to be identical), Small Lymphocytic Lymphoma (SLL), being designated a lymphoma, was staged by the Ann Arbor staging system and Chronic Lymphocytic Leukaemia (CLL) had the choice of two staging systems, Rai (predominantly USA) or Binet (predominantly Europe). So it is possible as you have found, to meet mismatched staging criteria in Ann Arbor vs Rai staging.

    Read the pinned post: What's the difference between CLL and SLL?

    healthunlocked.com/cllsuppo...

    Importantly, the decision on when treatment is required is largely independent of your stage. You are in the enviable position of having access to two of the best CLL specialist centres in the world. Just ask each doctor why they made their specific treatment recommendations and compare these to the Guidelines for the diagnosis and treatment of CLL: a report from the International Workshop (iWCLL)

    bloodjournal.org/content/11...

    bearing in mind that you can be offered different treatment options based on the collective experience of each CLL specialist centre.

    My specialist was enlightened enough to give me a stage IV CLL/SLL diagnosis over 8 years ago and I'm still in watch and wait. I didn't meet the CLL criteria of a lymphocyte count of over 5 at diagnosis - it took me another 18 months to achieve that, but I had swollen nodes and spleen plus sufficient bone marrow involvement to impact my platelet, red blood cell and neutrophil production.

    Neil

  • Very helpful Neil, based on information I presented with CLL not SLL although it is fairly insignificant as they are treated the same. My lymphocytes have been over 6 since 2013 and my bone marrow showed 83% involvement. I began treatment based on extreme fatigue. I have been very fatigued and not myself for three years. I'm taking imbruvica/rituxin and only four weeks into treatment feeling better than I have in years.

    My biggest concern is which dr to consult with going forward as the OSU dr did not agree with MDA dr so this is something I must decide upon for myself. As you said, I'm very blessed to have two very good options. OSU dr wants me to do imbruvica alone and drop rituxan. MDA dr wants one year of rituxan with the imbruvica. Dr at OSU says there is no value added to taking the rituxan. Feels it will make me more likely to get infections possibly pneumonia. When I asked dr at MDA, he said I can go much lower on counts and be fine. All counts were in range expects for lymphs, neutrophils before treatment began.

  • Great to hear you are feeling the benefit of your treatment so soon after starting treatment. With a bone marrow involvement of 83% it's not surprising.

    Thanks for expanding on the different recommendations from two top international CLL specialist centres on what is a new treatment combination and for which we will all benefit from the record of your experience and others on imbruvica/rituxin. Basically, MDA are giving precedence to the historically better treatment outcomes when using combined therapy (cancer cells struggle to develop resistance to two or more different attacks), whereas OSU are being more conservative and reducing the risk of infections from possible neutropenia. While MDA have assessed your neutrophil count as having a good safety margin, the challenge is that neutropenia can develop quickly with no warning signs, as neutrophils last less than a week before needing replacing.

    Take note of your neutrophil counts in your blood tests and familiarise yourself with this outline on how to keep yourself safe:

    lymphomas.org.uk/about-lymp...

    I've personally seen my neutrophil count drop by half in blood tests a week apart, which fits in with the neutrophil half life of about a week.

    Neil

  • Hi Neil I note you have been stage 4 for many years. You mention you are still WW. May I ask how do you feel re energy levels? How are your platelet numbers? What in your opinion puts you in such stage? I suppose Im stage 4 nearing treatment I believe due to energy/malaise off an on but quite frustrating and platelets sometimes sub 100

    Thank you!

  • I'd suggest this is worth a new post from you for feedback from the entire community.

    The change in my energy levels was one of the biggest changes I had to adjust to following my diagnosis. In retrospect, I can see that was significantly caused by frequent infections resulting from my neutropenia, caused by 54% bone marrow infiltration and a consequent cytomegalovirus (CMV) infection, which hit me hard for two months. It then took me about 18 months to get back to about 80% of my previous fitness by paying attention to avoiding infections, boosting my vitamin D into the normal range and very gradually increasing my daily exercise. Nowadays, other than generally needing a nap during the day, my energy levels are OK - provided I pace myself.

    My platelets have thankfully stabilised around 100 since starting IVIG.

    You can find the Binet and Rai staging guidelines in the iWCLL Guidelines document: bloodjournal.org/content/11...

    Neil

  • Thank you.

  • Jenxjen,

    I just had a visit with Dr. Byrd at OSU this past Tuesday. I cannot say enough about him and his staff. I have complete trust in that whole hematology/oncology department.

    Still being in watch and wait, I can't give you much advice as far as treatments but just know that at OSU, you are in great hands.

    Best wishes to you!

    Kelly

  • Thanks Kelly,

    Yes, I was very impressed with the dr. I consulted with at OSU as well. It's just all been a bit overwhelming to be DX on 1/18/17 and start treatment on 2/17/18.

    My DX experience was frustrating as many others suffering from this disease , years of going to dr, presenting with extreme fatigue and being told I'm depressed. As I pulled up past blood work there is a definite pattern of disease but dr missed this which is understandable as training is not to look for CLL as a general practitioner.

    Water under the bridge. I allowed this to send me into overdrive when I got DX and my best advice so far is to not overreact when you hear cancer, it is overwhelming but knowledge really levels the playing field.

    Also, wonderful to hear that you are "watch and wait", I turned 51 the day I got my DX so my first visit to MDA was interesting. Most patients seemed to be 70+ and about 2 who seemed in 50's. There were probably 5 or so who looked 30ish.

    Best wishes for many years of watch and wait to you!

  • Hi jenxgen, Several OSU patients that I know were presented with a couple of treatment paths with different combinations to chose from, based on their various markers and profiles. It was hard for them to choose. I guess what I am saying is that your decision conundrum between two treatment paths could have happened at OSU alone, but that they whittled it down to recommend only imbruvica based on your CLL profile, is significant. I recently had my visit at OSU and, although I remain in W & W, treatment naïve, was told that had I required treatment at this time he would go with imbruvica, nothing else. Good luck with whichever you choose.

  • The staging of SLL ( Ann Arbor) vs CLL (Rai or Binet) sound very different but as stated before don't really have much to do with treatment or prognosis. The Ann Arbor system focuses on nodal involvement and the Rai and Binet systems focus on peripheral blood involvement and impacts on various counts (ALC,RBC, NEUT, PLAT.). My oncologist staged me as SLL 4, while in my second opinion with Coutre at Stanford I was CLL I. Regardless of staging I required immediate treatment because of very large nodes. I admit hat when I first heard SLL stage 4 I thought I was a goner. With more education I found that such a staging wasn't really as bad as it sounded.

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