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Does anyone have B-cell prolymphocytic leukemia (B-PLL)?

Blood Cancers & Disorders | Last Active: Nov 14, 2022 | Replies (188)
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@franchronic77

I have cll.Ive been observed since 2019.My wbc is 82 now. I got 2nd opinion ( online) from UVSD saying I was rai 1. My spleen is 13.The oncologist monitoring me is sending me to another gastric m.d.to see if I can go on acalabrutinib pill. I had nlh in 2001 and achieved remission after 8 rounds of iv drip retuximab. 19 yrs.later cll entered.I live in an area that has a " trauma " hospital without a cardiologist on staff. The hospital where my hemotologist/ oncologist practices doesn't have a gastroenterologist. I am terrified to begin any therapy without 1 of those on staff. She's proposing the Venetoclax/ Obinutuzumab, or Acalabrutinib for life. I need another opinion. Help.

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Replies to "I have cll.Ive been observed since 2019.My wbc is 82 now. I got 2nd opinion (..."
franchronic77 | @franchronic77 | Dec 15, 2021

UCSF AND NHL

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Colleen Young, Connect Director | @colleenyoung | Dec 17, 2021

Hi Fran, welcome. I can imagine how concerned you are not having a team of specialists available where you are currently getting care. Have you considered contacting Mayo Clinic for a second opinion? After visiting Mayo Clinic, they can often work with your local team, offering the expertise that may not be available to you locally. Here is the contact form and/or phone numbers to inquire further: http://mayocl.in/1mtmR63

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