It is when your white blood cells go up the spinal cord and into your brain, menenigial encephalitis. I was in the hospital for a little over 30 days (month of June). I'm recovering now but it is a very slow process. Dizziness, left and right eye don't align so I see double vision. Getting better though. This note is a witness. The first time I tried to use my computer, it took 45 minutes just to login to my bank. I had such a bad headache that I stayed off my computer for awhile. When I first got home I slept other than eating. Now I take about a 3 hour nap. I had one day where the problem with my eye was gone and so was the dizziness. That was wonderful, but several days later it was back. I walk like a drunk. But I am so glad to be alive!
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MyCLLJourney
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Good to hear you are on the improve. How were you treated? CLL rarely enters the Central Nervous System but when it does, the blood brain barrier makes treatment difficult, though ibrutinib can work.
The treatment I getting is R- CVP. The same chemo I had in 2012. I'm 13k mutated so I feel a little robbed. My wbc was 173.3. Probably overdue for calquence. My oncologist said as long as it was only my wbc that is high, no need to treat. But she said as fast as it's been going up, I'll probably need treatment within a year. My wbc is 5.3 now, so probably no need to take calquence or any inhibitor now.
I didn't want chemo, but little did I know I had to get the wbc down as quickly as possible. The inhibitors wouldn't do that.
PS. R-CVP is Rituxin, something I'm not sure, vincristin, and prenidzone, along with the meds for nausea and tylenol. The nausea meds have helped with the dizziness too.
Note: the medication that begins with C can also cause Sarcomatoid Carcinoma. 1 in 25 ppl in 25 years and I have it too. Caught very early so I just hope the chemo for that is successful. It's a precautionary treatment.
The C is for cyclophosphamide, so you are having two of the same drugs used in FCR treatment for CLL, cyclophosphamide and rituximab. The prednisolone is a corticosteroid. The vincristine is an alkaloid originally derived from the Madagascar periwinkle plant!
Wishing you a long remission for your CLL after successful treatment of Encephalitis.
No, it is different meds. They wanted to do BCG , but that relies on your immune system to fight off the cancer. So, this other chemo. My husband knows the names. Ice had 1 treatment or of 6. Once a week for 6 weeks
I’m sorry you are having such a troublesome CLL journey, but very glad you are on the mend and getting some (one!) good days occasionally. Very best wishes for a speedy recovery.Cx
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Colon cancer secondary to CLL 
CLL and Secondary Cancer
Have you had experience with Venetoclax?
What kind of fatigue do you have?
