Tuesday, March 22, 2016

Seventeen Month checkup

Eight years since diagnosis and seventeen months on Imbruvica.

Dave is still on Imbruvica and it's still working. Blood work today showed normal range for red blood cells & lymphocytes and no palpated nodes. 

Side effects (from the disease or the treatment?) are increasingly a problem:

Peripheral neuropathy is worse. Dave frequently drops things and needs help opening jars & packages. 

Constant infections are a problem. Skin lesions on hands, feet & face never go away. Respiratory infections and mouth lesions have been severe for the last two months. The hematologist-oncologist is considering Acyclovir & Immunoglobulin infusions.

Fatigue is an ongoing issue - he's usually shot by noon, and is unable to walk more than a quarter mile without rest, and a mile, total, per day. 

But it could always be worse and, all things considered, he's enjoying life. 

Friday, January 22, 2016

14 months on Imbruvica (Ibrutinib)

Access to health care has been the scariest issue in the last eight months. (We moved from California to Nevada and had to switch insurance exchanges, specialty pharmacies, and doctors.)

But the leukemia treatment, Imbruvica (Ibrutinib), has been doing its job. Dave saw his new hematologist-oncologist today and got 6 vials of blood tested. Everything looks great! Red blood cells are up (in normal range,) lymphocytes are down (in normal range,) platelets are slightly up (still a little low,) a few lymph nodes are slightly enlarged, but not causing problems.  All-in-all a good check up.

The side effects of the Imbruvica (Ibrutinib) treatment are fatigue, brain-fog, infections, nose bleeds, and now (new ones) dizziness and shortness of breath on exertion. Dave’s new hematologist-oncologist thinks that is due to altitude - we just moved a couple of months ago from sea level (San Francisco, CA) to 4,500 feet (Reno, NV.) I didn’t have any trouble adjusting so I thought Dave’s issue had to be the CLL. However I just asked around and some of my neighbors say it took them much longer to adjust, so maybe that’s all it is. The doc ordered a chest x-ray just to be sure.

The other good news is that living in Reno is significantly less stressful and more enjoyable than living in San Francisco. (One of our new neighbors, with Dave, at the top of this entry.)