David W. Sumner

David W. Sumner: 1958-2017

Dave passed away, at home, on March 25, 2017. He collapsed, in his photo studio, on March 21st, was taken to the ER, admitted to ICU, and then back home on hospice on the 24th. As mentioned in the previous post, his spleen was bleeding, as well as his liver, and he went into kidney failure after more than 20 transfusions.

I know it's a cliche to say that your spouse was your best friend, but it was true in this case. Both of us have many good friends and Dave was the best friend a person could hope for. To the vulnerable & defenseless, he was a hero. To his friends, he was loyal, generous, and kind. To young photographers, he was a mentor. To most of the rest of the world, he was a curmudgeon. 

I join the rest of our friends in mourning his loss.

ICU

The IvG was infused, but the red blood cells continue to fall and the source has been identified as a leaking spleen. His clotting factors are worse than last week, so he's not a candidate for surgery. He was admitted to ICU last night and they're trying to treat him with FFPlasma, Red Blood cells, vasopressors and lots of IV fluids.

Still Hanging In There

The Coombs test was negative, so his sudden anemia is not hemolytic. There's also no obvious signs of bleeding, in spite of a PT INR of 6.1, so the loss of red cells is still a mystery. All signs point to a bad infection, but cultures are still pending. He's still in bed 24/7, and feeling every kind of lousy. I thought he looked a tiny bit better today, and the doctor & nurses agreed. Dave is not so sure. Still waiting for insurance approval for his IVIG infusion.

No Good News

Update on Dave's condition: We still don't know what's going on, but whatever it is, it ain't good. His condition has deteriorated rapidly in the last three weeks and he spends about 22 out of every 24 hours in bed. He's in pain, he can't sleep, he can't eat much, and if he tries to do anything besides rest in bed, his lips turn blue and he starts gasping.

We saw the oncologist today and he ordered a boatload of more tests. The working hypothesis today is that he has hemolytic anemia as well as some kind of systemic infection. But that's still a guess, at this point. None of the labs that were done so far present a clear-cut picture (hence- more tests.) They took enough blood today to make a healthy person faint.

He started on antibiotics (Levofloxacin) today. Tomorrow we go to radiology and Friday we see the doc again. The doctor is also trying to set up a Gamma Globulin Infusion for Friday, if the insurance will cover it. 

Imbruvica Failing After 26 months

Dave - still looking forward.

Today the oncologist told us what we had suspected, but didn't want to hear. Dave's been having increasing difficulty with fatigue, infections and orthopedic issues, so his doctor ordered some new studies and  they showed that his CLL has moved to a new, more serious level. Since this blog has two audiences (friends & family and fellow CLL travelers) I will start with the basic, layperson's summary, then move on to the medical details.

The prognosis is not good and the options are limited. At this time, the plan is to "keep our powder dry" by which the doctor means to keep using his current medication as long as possible (maybe another month or two,) then start the next medication, which is expected to work for about a year. At that point, we can hope for some new, yet-unknown treatment, or a bone marrow transplant.

Dave has some skeletal issues (degenerative disc disease and osteopenia) which are causing him significant pain. His sciatica has kept him in the house for the last month. And of course, he has fatigue & frequent skin & respiratory infections. But he's still enjoying life and is hoping for a miracle.

Dave's hematologist/oncologist ordered a new FISH Flow Cytometry (his third since diagnosis.) Dave's initial FISH Flow Cytometry showed only a 13q deletion, but he has since acquired a 17p deletion, with IgVH unmutated, and CD38 great than 30%. He's been on Ibrutinib for 26 months and still has oddly reasonable bloodwork, but enlarged lymph nodes, and the other issues mentioned above. In a month or two, the doc plans to start Dave on Venetoclax.

More details when we get 'em.