Saturday, April 7, 2012

An update

I have not posted in many months; for that I apologize. It has been a terribly difficult period, and I just have not felt like posting, not to mention that I have only unfortunate news to report.

I have been in the hospital more than I have been out, though my last admission was in early February. I came close to packing it in in early January, when I was taken by ambulance (I remember nothing of this, but I have a hefty bill from Sac Fire Department) to the hospital with a raging fever.

As far as CAL-101 goes, I'm off the drug at present. I have had a flare up again of the diarrhea, to the point were I was in the bathroom 50 times in one day. One cannot live like that; literally, as my potassium dropped to dangerous levels.

The good news is that I seem to have some residual benefit from CAL-101. I've been off the drug for three weeks or so, and I am still doing OK. My abdominal nodes are back up, and that is unfortunate, but they appear to not be giving me lots of problems. I am also sweating some at night, but that doesn't wake me up, so I don't know if that qualifies as drenching night sweats (I don't think so). It's not a good sign, but I can live with it.

I will see Dr. Coutre at the end of the month to see where we go from here. Off the drug, my diarrhea has abated, but not totally. He believes that I've developed colitis, perhaps separate from the drug. All I know is that I'm 90% OK on the diarrhea front, but it's got to be 100% or I'm still pretty much home bound.

I note with sadness the passing of Dr. Hamblin. He and I sparred on a number of occasions and on a number of topics, but his knowledge and his expertise was without question. He is terribly missed already. He could explain complex issues in a way even I could understand it.


Anonymous said...

Barry so pleased you've managed to update us. I am newly diagnosed with similar markers to you and have followed your blog since I first heard the word CLL in December. I'm 38 and my specialist wanted to start me on FCR in January as a first treatment here jn Australia - thanks to you I pleaded for a period of W & W and another expert last week told me I may not need treatment for 12 months. I'm sorry you've been through the mill. Praying something good is on the horizon for you. Best wishes, Deborah in Melbourne

Barry B. said...

Thank you for your comments. No one knows the course CLL will take. Although I was (am) unmutated, I waited eight years before my first treatment. I ascribe that to me taking 75 mg of zinc and 1000 mg of vitamin D every day. CLLers have an imbalance of zinc and copper, so that copper advances ahead of zinc. Zinc is a natural copper chelator.

justme said...

So glad to see you blogging again, Barry. Was starting to really worry about you.

Bonnie said...

Hi Barry, glad you're still blogging. Your lengthy absence had me concerned about your status. Hoping for good news from your next appt.