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sofaramnotdead (@sofaramnotdead)

Chronic Lymphocytic Leukemia

Blood Cancers & Disorders | Last Active: Jul 30 8:22pm | Replies (34)

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@sofaramnotdead

Hi, it’s January 18, 2018. Are you still alive, Dougmann? I hope so! If so, how high did your WBC get?

As of today, my CLL is still in remission. Mayo is giving me monthly immuneglobulin infusions and I have been taking a couple of antibiotics for over 6 months which may help.
However, I have a bad cold that is getting worse by the day and Rochester is very cold. If there are any nurses or physicians out there, is my immune system going to be able to reverse things?

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Replies to "Hi, it's January 18, 2018. Are you still alive, Dougmann? I hope so! If so, how..."

During imbruvica treatment my white count peaked in the low 40 Ks, absolute lymphocyte count 30 K plus, Prior to my first treatment, with Rituxan, lympocytes were over 150,000, lymphatic involvement very extensive, spleen enlarged with symptoms of ischemia. It was a question of treating the CLL or removing the spleen. After rituxan, lymphocyte count bottomed out at 1K, and rose to about 10K when I started imbruvica. On 2 occasions when I had clonal and total lymphocyte counts, at time of diagnosis and shortly after relapse (prior to imbruvica), the difference was about 1K per microliter, presumably consisting of normal b-lymphocytes plus T-cells, with T-cells predominating as they should. That would be a low T-cell count and a low count for normal b-cells. CLL is known to suppress T-cell counts as well as counts of normal b-cells. I've had serious problems with infections since about 6 weeks after starting imbruvica. However, I am resistant to starting IVIG again and want to see how things go at a reduced dose before re-visiting the issue of starting IVIG. I got very little benefit from IVIG when I was previously getting it for about 2 years. Imbruvica is a serious immune suppressant that is FDA approved treatment of chronic Graft Versus Host Disease. I am hoping that a dose reduction provides adequate relief from the immune suppressant features of imbruvica without rendering it ineffective as a CLL treatment.

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