CLL Support Association
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Day 3 of OSU Trial


Just completing week 3.

Last week, I was in really good shape. I had no loss of energy and felt like myself. The only negative is my rash got completely out of control and I have been even more itchy than usual. To put this in perspective, think of what it would be like to have 300 mosquito bites on your arms and legs.

Some of my numbers were in the right direction, but some were slightly down.

This isn't surprising because lots of white blood cells have been trapped in my lymph nodes which continue to shrink. In fact, they couldn't feel my spleen today (a spleen is essentially a specialized lymph node).

Here are some key numbers:

WBC 17.9 (up from 14, but still low historically)

Absolute Lymphocytes 11.8 (up from 10.92)

RBC 3.27 (basically flat from 3.31)

Platelets 175, up from 165 (normal both weeks)

Hemoglobin 9.7 (basically flat - 9.8 last week)

Neutrophils 25 (up from 17 - 40 normal, these fight infection)

Creatinine 1.06 (down from 1.25, and now normal - measures kidney function)

Basically, they were happy.

I think I've mentioned before they wait for labs to come back before treatment. I asked how often they don't do treatment because something's wrong. They said about 10% of the time, which I thought was interesting but also made me nervous because statistically you're going to have a week they don't treat you.

In addition to blood tests, they give you psychological tests every week that I assume support some graduate students' graduate studies. There are endless questions about your mood. They also ask cognitive questions. The one I hate is they read you a list of words and you need to repeat back as many as you can. I somehow got them all the third time they asked, but it's hard to do in a Benadryl-induced haze

A fun part of my day is I got a visitor who is a member of this forum. I don't know how private she is, and I forgot to ask, so I won't mention her name, but needless to say it was cool to connect, and I am going to stay in touch.

Other good news is on the rash front. They are giving me some meds which I'm hoping will help.

Unfortunately, my plane got cancelled for weather-related reasons two weeks running. I was able to Priceline a room and stay downtown which I normally don't do. I walked around and ate at the #2 ranked restaurant in Columbus and then ate Jeni's ice cream (local ice cream chain, very tasty and worth the calories). Yes, I'm stuffed, but maybe that will help me go to bed early. I'm on a 5:40 am flight. Ugh.

The good news is that won't happen next week because I'm off for a week. It's just a lab week, and I can do the blood draws locally.

That's all for now. Let me know if you have any questions.

5 Replies

I'm so glad how well you are doing. 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻



How can anyone be expected to do cognitive tests on Benedryl !?? Maybe they are testing the ability to function while looped. I'm glad things are going so well!

1 like

So happy you are doing so well. You have a wonderful spirit and positive attitude. You are truly an inspiration.


I'm thrilled to share that we had the opportunity to meet. Continued blessings and prayers. Hope to see you soon 💕

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I look forward to your updates and am so happy to hear things seem to be going well for you. Sending good thoughts and continued best wishes.



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