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@stanleykent

Sunfishgirl. Thanks for checking in. I hope you are doing well. I expect you may have read through some of the previous pages of comments. There are quite a few that have commented in this forum but it has been fairly quiet lately. I'm hoping no news is good news.
I'm always interested in hearing from others and their experiences. SMZL seems to have a lot of symptoms, many different diagnosis and treatments. If you can share, let us know how this has occurred with you and how you have dealt with it and the medical care you have received.
Thanks for the facebook suggestion, I'll check into that.

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Replies to "Sunfishgirl. Thanks for checking in. I hope you are doing well. I expect you may have..."

Hi Stan. I am 71, married, have two children and have been blessed with three grandchildren since I was diagnosed. I was diagnosed in 2019 after telling my Internist that I was having little fevers for an hour or two every day for two months. I felt 100% fine. She drew blood and all hell broke loose, medically speaking. She sent me to a hematologist who declared I had CLL (which my father died of in 1995) and ordered a bmb, a ct, a pet scan etc. All the above tests were unnecessary I now know. Fortunately I had quickly joined a CLL society support group where a very knowledgeable member referred me to a top CLL world specialist. He ordered many more blood tests, and an ultrasound of my (enlarged) spleen, and concluded that I had smzl not CLL. After three months I trended toward anemia and my platelets were low so I received four weekly rituxan treatments. All measures bounced back to normal after the second infusion. Lately the fevers have returned, and my appetite is diminished so I believe I might be relapsing. My platelets have declined and my hemoglobin and hemocrit are low. I’ll be seeing him in January and will take it from there. He said “We know rituxan works well for you so if you relapse that will be effective again.” Time will tell.

I’m grateful that our disease is indolent and highly treatable. That being said, I do sometimes worry about Richters transformation, reduced immunity and diminished energy. I’m still working half time and am physically active— pickleball, swimming, long walks. Like everyone, I’m hoping to be able to continue an active life style.