cll/sll or MZL? & Rituxan : I'm month... - CLL Support Assoc...

CLL Support Association
12,975 members20,169 posts

cll/sll or MZL? & Rituxan

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.

14 Replies
oldestnewest

How many Flow Cytometry tests have you actually had. The various CD this and that can change. My first one I was CD20 bright and CD45 bright....but still got a solid CLL diagnosis.

I don't have a copy of the most recent one done, 5 months ago before I started Ibby....but I know the values were quite a bit different.

Reply

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.

Reply

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.

Reply

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.

1 like
Reply

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.

Reply

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?

Reply

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

Reply

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.

1 like
Reply

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

1 like
Reply

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

2 likes
Reply

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;//www.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).

Reply

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

1 like
Reply

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.

Reply

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.

Reply

You may also like...