mrb Member Posts: 4
I discovered I have CLL thru a routine exam. I imagine there are a lot of people who find out that way. After reading the many comments & messages shared on this website, I decided I would tell about my situation. I discovered that I am not nearly as informed about my circumstance as some others & I think I will ask a few more questions of my doctor, thanks to all of you.

Of course I had many tests just as all of you had. My CT Scan showed that I may have Tuberculosis. This put a delay on my Chemotherapy until we found out if the scaring on my lungs was indeed because of the TB. After a TB Gold test, I was told that I do have LATENT TB. It will become active as soon as my system gets weaker, either thru letting my CLL do it's thing or by having Chemo. The TB is curable, I just take a pill for 9 months, never miss even one day, and then I should be fine. The pill is called Isoniazid. The state will pay for the pill if I can't afford it. They do not want a contagious person exposing tons of people. The problem is, my doctor says my chemo can not wait 9 months. So, to shorten my story up, I start Chemotherapy on May 16th. Before I found out I had TB, my Chemo sessions were 3 hours the first time, then 8 hour for the next several times. Now I will do 2 one hour doses of chemo per month. I guess doing shorter doses of Chemo may not "turn my TB loose." Time will tell.

I'm not looking for any advice (altho it's appreciated), I have found plenty of very useful information right here thanks to all of you. I just didn't see anyone on here having a contagious disease along with CLL or any other type of Leukemia. I thought maybe I would add my information about my treatments incase someone else finds themselves in this situation. I will update any information that I figure out on my journey.

Thank you everyone for all your words of encouragement on here. I have found out diet and positive attitudes are very important too.
My personal information is: My blood test show I am positive for CD38. My platelet count is 57 and my spleen is enlarged. According to my CT scan in March, my spleen measured 17cm and my CT scan on May 9th, it measured 21.4cm. I do feel very full most of the time. No pains at all. Again, for TB, I am taking Isoniazid 300 once a day for nine months, Vitamin B-6 twice a day for nine months. I will start taking Allopurinol 300 the day before Chemo for 30 days. My chemo will be Bendamustine. After reading everyone else's information, I think I do need to learn more about my 'numbers' and keep a tab on my progress. I will be taking my chemotherapy class just before my first treatment so that will be a great time to find out what I need to know. Take care and God bless you, Michael


  • mrb
    mrb Member Posts: 4
    Everything in check!

    It's been over a year since my last chemo treatment. Blood counts are all boring!! Prayer & great doctors, perfect combo. I wish everyone the best of everything!