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.

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. 

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.)

Imbruvica (Ibrutinib) 5 Month Update

David W. Sumner, March 2015

A few days ago I got an email from another CLL’er wanting to know how Dave was doing after five months of Ibrutinib. (Sorry for the long delay in posting.) We answered her by email, and here’s the update for everyone else who was wondering.

First of all - Dave is still here and still on the Ibrutinib. Keeping him on the drug has been a Kafkaesque nightmare of financial and insurance regulatory bureaucratic hurdle jumping. I’ll spare you the details, other than to say, never a week goes by without some heart-stopping phone call or letter informing us that he is no longer covered or that we owe some pharmacy/doctor/hospital/insurance-company some impossible amount of money. It really would take a full time office assistant to keep up with and make sense of it all. We do the best we can. Sometimes we have a glass of wine and laugh about it - it’s just too absurd.

The good and the bad about the drug itself? That’s hard to tease out from the effects of the disease. The bottom line is that he is still here and enjoying life, several years after being diagnosed with a disease that was expected to kill him before now. He’s had a few close calls. I think he’s in better shape than he was last fall, before starting the Ibrutinib. At least the serious, debilitating respiratory problems have faded. And he looks good - better than he has in years, actually. Losing those bulky lymph nodes made a huge difference.

However, there is no shortage of problems.They mainly fall into three categories: fatigue, brain fog, and infections.

The fatigue is unrelenting and it is mental as well as physical. So far, we have not discovered any diet or sleep strategies that seem to help.

The brain fog is serious and it is probably the most disturbing aspect for Dave to adjust to. His memory for facts & details and his ability to focus have been shredded. 

The infections are what worry me. Every little thing (a hangnail, a blister, an ingrown hair) turns into a huge raging abscess, without medical intervention. And medical intervention is hard to come by since we cannot find a family physician who takes his insurance. (His oncologist is fine with the insurance, but the oncologist does not deal with infections.) Which means he has to be treated in emergency rooms. Which leads to different problems …

But dealing with new problems is better than no deals at all. So, we’re keeping on.