cll/sll or MZL? & Rituxan

[Sunfishjoy]

I'm month three of trying to get properly diagnosed. Initial cll/sll diagnosis now in doubt at two leading cancer centers because I am cd20 bright. So MZL or some other type of small b cell lymphoma is hypothesized. Yesterday I saw a lymphoma specialist who recommended rituxan now even though I don't have an exact diagnosis. I am hesitant to allow this treatment and will get another opinion. But I'd love to hear from anyone who had rituxan alone as a first line treatment. By the way my only symptoms are mild anemia, low grade fevers and a slightly enlarged spleen.

[debcesq]

I was diagnosed in March 2018 at Mayo Clinic with splenic marginal zone lymphoma. I had been misdiagnosed at SUNY Upstate in Syracuse and at Sloan Kettering. In March 2019 I had 4 rounds of Rituxan due to massive spleen. My spleen and bloods are now normal.

[Sunfishjoy in reply to debcesq]

Wow. That’s great that you are doing so well. How did you feel from Rituxan infusions? Any side effects? Is it a tough treatment to endure? If I have mzl my (uneducated) diagnosis would be SMZL.

[debcesq in reply to Sunfishjoy]

Are you on watch and wait? I was for a year. I had no symptoms. I was diagnosed because my white blood cell count was slightly elevated. I was diagnosed in January 2018 with breast cancer. Had a bmx. When I mentioned to the oncologist/hematologist that my wbc was off, she must have suspected and did Fish and flow cytometry. The next thing I know, they say I have leukemia. Went to Sloan Kettering. They told me I had some sort of lymphoma. Was not happy with care at Sloan, so went to Mayo. LOVED the doctors I saw there. Needed treatment in March 2019. The first infusion of Rituxan was brutal. I had a very bad reaction. Shaking. Chills. Nausea. They stop the infusion and give you all sorts of drugs to get you through. The next 3 infusions went off without a hitch. I feel fine now. Don’t have to see my hematologist until October. I wish you all the best.

[Sunfishjoy in reply to debcesq]

I’m not ww because I am not definitely diagnosed yet. Very frustrating. I had sonogram, cat scan, 2 mris, a bone marrow biopsy and a pet scan! Not to mention many blood draws. Eager to know the true diagnosis and then to determine ww or treatment.

[Sunfishjoy]

Hi Scottxxoo. Three tests indicated cd20 bright—two were blood flow and one was bone marrow. So are you saying cd20 bright does not rule out cll?

[Hidden]

i have b-pll and a bright cd20. i only bring this up because diagnosing b-pll is extremely difficult.

[Sunfishjoy in reply to Hidden]

Hi. Thanks for responding I have never heard of b-pll. Just looked it up. My blood abs lymph # is low but bone marrow was higher. I wonder if there is an sll like form of b-pll. I will put it on my list of questions for the dr. I hope you are responding well to treatment.

[Jm954 Administrator]

Generally it's always better to get a confirmed diagnosis before having any treatment. Treatment can confuse the clinical picture and, although it might work, it might not be the optimal treatment for your type of lymphoma.

Jackie

[Sunfishjoy in reply to Jm954]

Yes, that sounds right, my gut says no treatment until a diagnosis has been nailed down. Thanks.

[MsLockYourPosts Passed Volunteer]

Follow your gut! If you give your general location others here may be able to recommend specialists near you. You could also , as you are in the US, consider the online consult program offered by http;//cllsociety.org

Should Rituxan be the treatment chosen, I can tell you that I breezed through it with no side effects at all. Same with Gazyva (sort of third generation Rituxan).

[Sunfishjoy in reply to MsLockYourPosts]

Thanks and good advice for sure. I am nyc based and being followed by two “world specialists”. But apparently I’m a perplexing case.

[Judyanne]

Hi, I was originally diagnosed with Sll but later determined to be enmzl or combo of sll/enmzl. I had bright cd20, dim cd 5 and neg. Lef-1. Obinutuzumab reduced my spleen to normal.

[The-Man-with-a-Plan]

Babsnyc - my brother took rituximab to treat Waldenstrom macroglobulinemia, a type of non-Hodgkin lymphoma. He had a pretty rough time during the first infusion (fevers, chills, rigors (convulsions) even though the infusion suite staff premeditated with Tylenol and Benadryl. His "shake & bake" episode took him and the staff by surprise. They immediately slowed the infusion and were mindful of his reaction to the drug thereafter. Subsequent infusions got progressively easier.