tag:blogger.com,1999:blog-60746157944427475562024-03-13T10:37:58.504-07:00How's Dave Doing?Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.comBlogger98125tag:blogger.com,1999:blog-6074615794442747556.post-68970017899543924252017-04-09T09:52:00.000-07:002017-04-09T09:52:34.220-07:00David W. Sumner <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjuKvVp7irPoeEnlTsYZkjIKVXE7uObfk2i7yAFsqZ9JNp0keriZBVJPsUpN9aD5TjnQVs7CPnM0SnMUDUtXcxHJ5Ldfm7xzeAV0qwZtMdz060PL348HFFwDa8RKsaz4Kq2vxFcXDRBybY/s1600/daveonwall.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjuKvVp7irPoeEnlTsYZkjIKVXE7uObfk2i7yAFsqZ9JNp0keriZBVJPsUpN9aD5TjnQVs7CPnM0SnMUDUtXcxHJ5Ldfm7xzeAV0qwZtMdz060PL348HFFwDa8RKsaz4Kq2vxFcXDRBybY/s400/daveonwall.jpg" width="387" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">David W. Sumner: 1958-2017</td></tr>
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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.<div>
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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. </div>
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I join the rest of our friends in mourning his loss.<br /><br /></div>
Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-81174852516697041822017-03-22T06:35:00.001-07:002017-06-05T07:35:31.922-07:00ICUThe 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. Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-16622144682531815762017-03-10T18:12:00.003-08:002017-03-10T18:12:42.579-08:00Still Hanging In ThereThe 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.Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-14499764930919878192017-03-08T14:55:00.002-08:002017-03-08T14:55:26.329-08:00No Good News<div style="color: #454545; line-height: normal;">
<span style="font-family: Verdana, sans-serif;">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.</span></div>
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<span style="font-family: Verdana, sans-serif;">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.</span></div>
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<span style="font-family: Verdana, sans-serif;">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. </span></div>
Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-76247020958941662772017-02-03T20:36:00.001-08:002017-02-04T08:23:26.318-08:00Imbruvica Failing After 26 months<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Dave - still looking forward.</td></tr>
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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.<br />
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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.<br />
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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.<br />
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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 <a href="https://www.cancer.gov/news-events/cancer-currents-blog/2016/venetoclax-cll" target="_blank">Venetoclax</a>.<br />
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More details when we get 'em.Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-40534058861047790422016-03-22T15:50:00.000-07:002016-03-22T15:50:05.949-07:00Seventeen Month checkup<span style="font-family: Arial, Helvetica, sans-serif;">Eight years since diagnosis and seventeen months on Imbruvica.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Side effects (from the disease or the treatment?) are increasingly a problem:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Peripheral neuropathy is worse. Dave frequently drops things and needs help opening jars & packages. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">But it could always be worse and, all things considered, he's enjoying life. </span><br />
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Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-23294397224824800532016-01-22T17:31:00.000-08:002016-01-22T17:34:49.974-08:0014 months on Imbruvica (Ibrutinib)<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSZjoGTNWDaszBxMWLQHUDt2TAKQezvaE-IpO3mz0VEsgrKtcChWMe1qz5OM6lxEOvOkxR3oxmjNlDxbx4rF4aJVpQmqFCrZYRzbiDi3S69FB30md_uUAIAK5yrmma3wcuE-Cw3w9ad8IV/s1600/davemadison.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSZjoGTNWDaszBxMWLQHUDt2TAKQezvaE-IpO3mz0VEsgrKtcChWMe1qz5OM6lxEOvOkxR3oxmjNlDxbx4rF4aJVpQmqFCrZYRzbiDi3S69FB30md_uUAIAK5yrmma3wcuE-Cw3w9ad8IV/s320/davemadison.jpg" width="267" /></a></div>
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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.)</div>
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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.</div>
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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.</div>
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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.)</div>
Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-33023198105319140392015-04-14T16:06:00.001-07:002015-04-14T16:06:47.633-07:00Imbruvica (Ibrutinib) 5 Month Update<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOcYeXwRGcoocN2qAOBmyDltExSRXg-PXHSakSkY3l5juVFrBHDQ1C6QPTBMFlbYKv0gizTbWcFQU_Ng6w-FRGc9srW6UB_bbjtYjfifS7Hx4iCOlpBNYHKnM6RgpzOKulIaiAdtyfMtLK/s1600/dave.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOcYeXwRGcoocN2qAOBmyDltExSRXg-PXHSakSkY3l5juVFrBHDQ1C6QPTBMFlbYKv0gizTbWcFQU_Ng6w-FRGc9srW6UB_bbjtYjfifS7Hx4iCOlpBNYHKnM6RgpzOKulIaiAdtyfMtLK/s1600/dave.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">David W. Sumner, March 2015</td></tr>
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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.</div>
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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.</div>
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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 <i>he is still here and enjoying life</i>, 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.</div>
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However, there is no shortage of problems.They mainly fall into three categories: fatigue, brain fog, and infections.</div>
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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.</div>
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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. </div>
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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 …</div>
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But dealing with new problems is better than no deals at all. So, we’re keeping on.</div>
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Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com1tag:blogger.com,1999:blog-6074615794442747556.post-31590705995230902912014-11-16T12:33:00.005-08:002014-11-16T12:33:56.083-08:00Imbruvica (Ibrutinib) Day Five, and CLL Networking<div class="separator" style="clear: both; text-align: center;">
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Dave started the Imbruvica (Ibrutinib) five days ago. So far the main side effects have been mild nausea and extreme fatigue. Nothing else seemed to change, good or bad, until yesterday afternoon, when we noticed that the lymph nodes in his neck seemed a little smaller.<br />
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These kind of blow-by-blow symptoms are mainly for the benefit of other people with CLL. Although we started this blog for family and friends, we soon became aware of the on-line network for CLL (Chronic Lymphocytic Leukemia.) Which is a lifesaver, sometimes literally. Check the sidebar >>> for our favorite links.<br />
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This disease is common enough in the general population to warrant interest from the bio-research industry: the <a href="http://www.cancer.gov/cancertopics/pdq/treatment/CLL/healthprofessional/page1" target="_blank">National Cancer Institute says that this year (2014)</a> there will be 15,720 new cases of CLL diagnosed and 4,600 deaths from CLL. About 120,000 people in the US are living with CLL, according to the <a href="https://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/cll.pdf" target="_blank">Leukemia & Lymphoma Society</a>. And the <a href="http://www.ncbi.nlm.nih.gov/pubmed/20839335" target="_blank">National Institutes of Health estimates</a> that 2% of the population has the condition but are undiagnosed. And yet, it can be maddeningly difficult to get knowledgeable medical care - not only for the main diagnosis, but for all the crazy secondary problems that crop up, due to the peculiar gene mutations in CLL, and a compromised immune system. <a href="http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/leukemia/index.html" target="_blank">MD Anderson estimates</a> that 15% of Leukemia patients were misdiagnosed before coming to the cancer center.<br />
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Anecdotally, I can say that it's more common than not, to have (non-CLL) doctors just brush off your symptoms, act like they're no big deal and actually tell you that "it'll go away on its own" (like a sinus infection that has lasted for years. Or tonsil/throat/ear/breathing problems that make it hard to sleep- one doctor told Dave that "you're not fit, you need to exercise more.") It's enough to make you feel a little crazy. Until you start reading these blogs by other people with <i>the exact same stories</i>. Suddenly, you realize you're not alone - there are other people out there, dealing with the same issues.<br />
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<br />Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-73415164469942043402014-11-11T09:17:00.000-08:002014-11-11T09:18:25.477-08:00Brave New World of Cancer Therapy<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><i>(Actually, these are AmoxKClav - the Ibrutinib hasn't arrived yet.)</i></td></tr>
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This morning we were awakened by a phone call from a pharmacist, who wanted to discuss the side effects, scheduling, lab testing and so on, for Dave’s new oral cancer therapy, Ibrutinib. He put it on speakerphone and I took notes. We both asked questions. It was the usual pre-chemo talk, except this time we were laying in bed, instead of sitting in plastic chairs after a 60minute bus ride. </div>
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(An excellent development for someone whose main complaint is fatigue and shortness of breath. And whose immune system is so shot, a handshake is more feared than welcomed.)</div>
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Now we await the Fed Ex delivery of the drugs - I just tracked it online and it’s on a truck, somewhere between South San Francisco and here. Should be here by noon.</div>
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We can even do the most frequent blood testing at home, if we can get the system set up: <a href="http://www.ptinr.com/home-inr-monitoring/how-does-home-inr-monitoring-work">http://www.ptinr.com/home-inr-monitoring/how-does-home-inr-monitoring-work</a></div>
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Wow, some things *are* getting better.</div>
Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-54502276249865473192014-11-10T14:13:00.003-08:002014-11-10T14:14:39.235-08:00Help is on the Way<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6YbzQqNcmskYeM5q_IdpdoI4bI24PCBh6_wP2m6KbqG8vu7q_0KoN-hW543Blm6oCXNOskv4_ZR7xJbkOTCGaBN01rGqZGYfUvrXMDE0vp5cg5RWULIRiq333PhmwYBZvEvqap4QVn6I/s1600/photo.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6YbzQqNcmskYeM5q_IdpdoI4bI24PCBh6_wP2m6KbqG8vu7q_0KoN-hW543Blm6oCXNOskv4_ZR7xJbkOTCGaBN01rGqZGYfUvrXMDE0vp5cg5RWULIRiq333PhmwYBZvEvqap4QVn6I/s1600/photo.JPG" height="320" width="320" /></a></div>
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<span style="font-family: Arial,Helvetica,sans-serif;">Today is a huge step forward. I received word that my prescription for Ibrutinib has been approved and a month’s supply is being shipped overnight. I should be able to start taking it Wednesday morning.<br /><br />Ibrutinib is extremely expensive ($100 per tablet.) The standard co-pay through my insurance is $1000 per month. But because of the super human efforts of the professionals at <b>Pacific Hematology Oncology Associates</b> at <b>CPMC</b>, specifically Dr. Tuan and especially Pharmacy Technician, Lori Heggli Rand, my co-pay was reduced to $10 per month.<br /><br />For me at this stage in the development of my CLL, Ibrutinib is the difference between life and death. Ibrutinib was approved for treating CLL only 8 months ago. It hasn’t been in use long enough to know if it will be the last course of treatment I will need. It may be effective indefinitely, we don’t know. There are newer therapies currently in trial phases that may prove more effective and a permanent solution. We will know in 3 years or maybe sooner.<br /><br />Ibrutinib won’t restore my damaged immune system to a healthy state, but it will suppress the cancer as long as I take 3 tablets every day for the rest of my life.<br /><br />So all looks promising for now and the most I can hope for right now and, for me that is indeed huge.</span>David W. Sumnerhttp://www.blogger.com/profile/04040019398856208133noreply@blogger.com1tag:blogger.com,1999:blog-6074615794442747556.post-76479322121727311902014-11-06T20:44:00.000-08:002014-11-06T21:12:42.686-08:00New Treatment Plan<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPBPwjT_hB4KnSw9_-cohbkRnipEfops-vgACNgNpyDXK_X7jnP8vcZBifNWRgRaQMH41BHDT26gUwHS-9jq3cd_qwbasehhmacj8Zp0bEs-COFTXp4-DH2awSt9A_GQhz_E9NWi04lnrs/s1600/dave.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPBPwjT_hB4KnSw9_-cohbkRnipEfops-vgACNgNpyDXK_X7jnP8vcZBifNWRgRaQMH41BHDT26gUwHS-9jq3cd_qwbasehhmacj8Zp0bEs-COFTXp4-DH2awSt9A_GQhz_E9NWi04lnrs/s1600/dave.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Dave, at lunch today, between appointments.</i></td></tr>
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<span style="font-family: Helvetica; font-size: 12px;">Today, we were at the medical center (CPMC) all day, with a short break for art (saw a couple of photo shows downtown.) Dave's condition has deteriorated rapidly in the last few weeks and a few days ago his primary care doc seemed alarmed at the change in Dave's condition, so he got things in motion. Today we saw the pulmonologist and the oncologist. They have all been in communication with each other, which is a relief, and they are all in the same building, which is the same place where Dave has gone for cancer treatments.</span><br />
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The upshot is, it's only been two years since the last round of chemo, so another round at this time would have a higher risk than benefit. Just a few years ago, there would be no other options. But a new treatment was just approved 8 months ago: Ibrutinib. It should reduce the cancer cells and their adverse effects, but not right away. Just like the older chemo, it's likely to make him feel worse before he feels better. And it's not without side effects. But it's still better than the alternatives. It's a pill, and he will need to take it for the rest of his life. He's thrilled that he doesn't have to deal with IV infusions again.</div>
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The next hurdle is getting our insurance to approve the treatment, and then affording the co-pay. And then obtaining the drug (apparently it has to be shipped here from Texas?) Luckily, Dave's oncologist has a staff person assigned to help us through these issues. We met with her this afternoon and she was very optimistic and reassuring. It might be a week or so before it's all figured out and he actually starts the drug.</div>
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Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com1tag:blogger.com,1999:blog-6074615794442747556.post-44492325635602701352014-10-26T11:12:00.000-07:002014-10-26T11:12:08.523-07:002014 Update<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRAPPnKmMc1y_hhnTzX1G8OLTsSGS5Pe43NtnOl3AZjhtfrTeF6uAr2JqW3dLv6aN5eo7fTE9cHWt2GInAokV38XB_8qJrfGsSW0bFHlOxdX6Id2ANuKPJCjO4yFk16roq2sBmjmSGYuD3/s1600/Dave.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRAPPnKmMc1y_hhnTzX1G8OLTsSGS5Pe43NtnOl3AZjhtfrTeF6uAr2JqW3dLv6aN5eo7fTE9cHWt2GInAokV38XB_8qJrfGsSW0bFHlOxdX6Id2ANuKPJCjO4yFk16roq2sBmjmSGYuD3/s1600/Dave.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Dave, gallery-sitting at our new BigCrow Studios Exhibition Space. </i></td></tr>
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<span style="font-family: Times, Times New Roman, serif;"><span style="font-size: 12px;">That good feeling we had, leaving Dave's last treatment, in December 2012 - it lasted about a year. Not nearly long enough, nor as long as we had hoped. About one year later, in December 2013, Dave came down with a vicious respiratory infection. And he has not been well since then. In 2014 it's been one thing after another, mostly respiratory infections, including a few trips to the emergency room. May was the worst month, with pneumonia, shaking chills and a temperature of 104.8. (Good thing Ebola wasn't here then.) He still has shortness of breath on exertion, white spots on the back of his throat (continuous, for months) and lymph nodes enlarging to the point that they are once again impinging on his other organs (per CT scan, and symptoms.) </span><br style="font-size: 12px;" /><br style="font-size: 12px;" /><span style="font-size: 12px;">He missed a lot of work days and eventually had to stop working. These days, it's hard for him to leave the house (and his air purifier) for very long, or walk more than a few blocks. He applied for disability (SSDI) and was turned down. We have an attorney and are appealing.</span><br style="font-size: 12px;" /><br style="font-size: 12px;" /><span style="font-size: 12px;">Meanwhile, we spend a good portion of every week jousting with insurance companies, health care providers, doctors, lawyers and government agencies. Highlights have been: lab companies and doctors' office staff who can't do simple math; the moron at Lab Corps who told me, "Yo!-F-Y-I- your doctor didn't put the right code on that sample," (so what is the right code?) "I don' know - I ain't no medical person." The doctor who told Dave that he couldn't breathe well because he "wasn't fit" and needed to "exercise more"; the three doctors who told Dave that his months-long throat infection was "just a viral infection - it'll be gone soon" and the $50 to $500 copay we have shell out every time we get one of these blithe pronouncements.</span><br style="font-size: 12px;" /><br style="font-size: 12px;" /><span style="font-size: 12px;">And by the way, I hate Blue Shield of California. If you were thinking of signing up with them, think again. They are expensive; impossible to reach when you have any kind of question; vague and opaque about what is covered and how much they are willing to pay, but one thing for sure is they don't want to pay much. I plan to spend the next 2 weeks trying to research a different insurance that will still let us get Dave's treatment at the Bryan Hemming Cancer Care Center (a wonderful place.)</span><br style="font-size: 12px;" /><br style="font-size: 12px;" /><span style="font-size: 12px;">We see his oncologist again in mid-November and hope to get some kind of serious treatment plan at that time.</span><br style="font-size: 12px;" /><br style="font-size: 12px;" /><span style="font-size: 12px;">All that said, we're both grateful he's still here, unlike some of our fellow CLL travelers (on the sidebar.) We opened an exhibition space in the front of our house, to show artwork and photos by us and our friends. Dave doesn't have to leave the house, he can see friends here, and maybe we'll get lucky and make a little money. If you're in the area, check our other website, </span><a href="http://www.bigcrow.com/" style="font-size: 12px;">www.bigcrow.com</a><span style="font-size: 12px;"> for open hours and come by and say "hi."</span></span>Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-81363176583677672262012-12-18T09:38:00.001-08:002012-12-18T19:14:16.537-08:00New Therapies Coming upWe've been hearing quite a bit about a new therapy called Ibrutinib (eh-BRU-teh-nib.) It's a <a href="http://www.cancer.gov/drugdictionary?cdrid=638648" target="_blank">BTK inhibitor,</a><a href="http://www.cancer.gov/drugdictionary?cdrid=638648" target="_blank"> </a>not chemotherapy, and it is administered in pill form instead of infusion. We hope to learn more about it in February at the <a href="http://www.lls.org/aboutlls/chapters/sf/patienteducation/emergingtherapies/" target="_blank">Emerging Therapies Conference</a>. But for now, here's a little preview from the ASH press conference on this drug.<br />
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<br />Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-76713584210459624842012-12-02T19:27:00.000-08:002012-12-02T19:36:12.166-08:00Treatment done, for another 5 years?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIl3Rkm0zuYtdJ1p-XdUOX97f3V_oXtJ7C4lcQa1Ado7wrjIkdCOOU29xhPbT1zTuL3BZEdGG0DtBEuoy1mQuLRUSDpBp7cS3Muw2S84uSM7Cm5Nz324Zo3lUgDXV8-9M7pj5cDg0y8rZo/s1600/daveanna.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIl3Rkm0zuYtdJ1p-XdUOX97f3V_oXtJ7C4lcQa1Ado7wrjIkdCOOU29xhPbT1zTuL3BZEdGG0DtBEuoy1mQuLRUSDpBp7cS3Muw2S84uSM7Cm5Nz324Zo3lUgDXV8-9M7pj5cDg0y8rZo/s320/daveanna.jpg" width="320" /></a></div>
Dave finished 6 rounds of chemo (Dexamethasone, Treanda, and Rituxan) in November and his hematologist/oncologist said he should be good for another 5 years. That first dose, in June, was a doozy - with a severe "shake 'n bake" reaction, followed by a pneumonia that landed him in the hospital. But since then, he tolerated this regimen much better than the Fudarabine/Mitoxantrone that he got back 2007.<br />
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We're hearing some very exciting news about new therapies in clinical trials and hope to get more details at the annual <a href="http://www.lls.org/#/aboutlls/chapters/sf/patienteducation/emergingtherapies/" target="_blank">Emerging Therapies</a> conference, in San Francisco, in February.<br />
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And I just want to say that having treatment at the <a href="http://www.cpmc.org/services/cancer/bhccc.html" target="_blank">Bryan Hemming Cancer Care Center </a>was an extraordinary experience. It's beautiful, comfortable; and it feels safe, calm, and professional. The nurses were wonderful, but then we've always been impressed with the nurses, no matter where Dave has been treated. But this facility was better than valium for soothing anxieties and letting the nurses do their best work.Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-26003536601749600882012-05-30T21:12:00.001-07:002012-05-30T21:22:47.366-07:00Round Two<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR8bT23Pz8iP_irg4vWxMyiJJ3JWytFgalrV26wOCcBdICGjMGbQEb_xm2lRxi5_g20CwT85i1f7VLD9BmAZoGFqtseLhznojtOgi83NCin5KVqIsv8k_Ugt69qXDYl1sJlid6-qdBIac/s1600/022312B-25.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR8bT23Pz8iP_irg4vWxMyiJJ3JWytFgalrV26wOCcBdICGjMGbQEb_xm2lRxi5_g20CwT85i1f7VLD9BmAZoGFqtseLhznojtOgi83NCin5KVqIsv8k_Ugt69qXDYl1sJlid6-qdBIac/s320/022312B-25.jpg" width="320" /></a></div>
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In two weeks I start my second round of chemo therapy. It's been five
years since round one and I'm due. The treatment will be Treanda/Rituxan once a month for four months. Looking forward to shrinking lymph
nodes an getting my energy back.</div>
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<i><span style="font-size: x-small;"><span style="font-family: Arial,Helvetica,sans-serif;">Photo: ©2012 David W. Sumner </span></span></i>David W. Sumnerhttp://www.blogger.com/profile/04040019398856208133noreply@blogger.com2tag:blogger.com,1999:blog-6074615794442747556.post-70350051154233671992011-07-06T07:19:00.001-07:002012-12-02T19:54:55.945-08:00Kicked to the Curb by KaiserDave has been a Kaiser member for 17 years, via two different workplaces. The company he was recently working for went belly-up so now he's looking for full-time work and looking for health care. <br />
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We knew things weren't going so well at Dave's last company, and knowing he had two life threatening chronic health problems, I tried to call and get another health care option lined up ahead of time. Which was useless. Everyone I talked to told me to call back after Dave was laid off and after his health insurance had expired. Until then, they wouldn't answer any questions.<br />
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After we got a notice in the mail from Kaiser, saying his insurance was terminated, we visited them to look into their "options for continued coverage" (noted in the handy little full color brochure enclosed with the "you're terminated" letter.) It was one of those surreal experiences with a smiling functionary behind a desk, telling you how screwed you were. Felt like we were in a Michael Moore movie.<br />
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You could get Cobra through your employer . . . oh, your company employed less than 20 people? Then they weren't required to carry Cobra. <br />
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You could apply for individual coverage but you'd probably be denied for having a pre-existing condition.<br />
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Even though I've been a Kaiser patient for 17 years? <br />
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You'd be just like everyone else.<br />
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You could use one of our "conversion plans" (which allows you to buy our insurance at obscenely high prices, but we won't reject you for having a pre-existing condition.)<br />
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Gee honey, which should we choose, homelessness, or health care (hunger is pretty much a given.) Aren't there any other options?<br />
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You could apply for Healthy San Francisco but they won't accept you unless you've been uninsured for 90 days.<br />
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So in the meantime? When my Coumadin runs out? Wait until that big clot gets bad enough to kill me and then hope I get to an emergency room in time?<br />
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Doesn't it seem a little bit insane that an organization that calls itself a "health care" organization, that claims to care about the health maintenance of its members, would look at a member like Dave (still being monitored and treated for Leukemia and a blood clot in the leg) and just cut off communications with that member? No effort at transitioning them to other caregivers, no diagnosis-specific advice about how to prevent his health problems from spiraling out of control. **It's ALL ABOUT THE MONEY!** "Pay up or die" - that's the true Kaiser ethos.<br />
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-- AnnaAnna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-37986814934234398192010-10-02T14:59:00.001-07:002010-10-02T15:02:20.145-07:00More and More<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEievxxJDPXjm377MBi_YJLGKlz_g60vXSi_V-T4Q3k9kIutQVyOoBoWHw53SYr1DNxQCrPePxUbHN4Z4T-Roa89WC4Vh6VmRRmG03sBaloKB7SlVNgzcCekGQX5Qk5qF8YDS_weVSWgQQ0/s1600/081710E-7.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 385px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEievxxJDPXjm377MBi_YJLGKlz_g60vXSi_V-T4Q3k9kIutQVyOoBoWHw53SYr1DNxQCrPePxUbHN4Z4T-Roa89WC4Vh6VmRRmG03sBaloKB7SlVNgzcCekGQX5Qk5qF8YDS_weVSWgQQ0/s400/081710E-7.jpg" alt="" id="BLOGGER_PHOTO_ID_5523571962472555362" border="0" /></a><br /><span style="font-family:arial;">It seems as if each year is busier than the last. That's very good in a way: I have the energy to keep up and I actually add items to our calendar.</span><br /><br /><span style="font-family:arial;">After quite a few years of constantly feeling run down and so out of shape, it's amazing to be able leave the office after a day of work and head downtown, meet a group of friends, go gallery hopping, then out to dinner and enjoy long debates and discussions about art and photography and publishing.</span><br /><br /><span style="font-family:arial;">When I do find myself slowing down it's because I've spent so much time on my feet and my aging joints are screaming. I enjoy walking and I've been walking so much in the last year my feet and knees are really showing the signs of taking a beating. I've also put new street tires on my bike, but biking actually helps my knees.</span><br /><br /><span style="font-family:arial;">The nature of my job is such that my mind is seldom far from thoughts of my own work. I'm able to devote more and more time to my <a href="http://www.flickr.com/photos/davidwsumner/sets/72157614647778496/show/">photography</a>, which is consuming more and more of my entire being, which is just fine with me.</span><br /><br /><span style="font-family:arial;">It's been three years since I ended the chemo treatment and almost a year since my last Rituxan infusion. My numbers remain good and are fluctuating well within the range of normal. I saw my doctor last month and he said that after my next visit in March of next year we will probably schedule the next two visits eights months apart then go to once a year. </span><br /><br /><span style="font-family:arial;">The goal now is to achieve that once a year schedule.</span><br /><br /><span style="font-size:85%;"><span style="font-family:arial;">Photo: ©2010 David W. Sumner</span></span>David W. Sumnerhttp://www.blogger.com/profile/04040019398856208133noreply@blogger.com1tag:blogger.com,1999:blog-6074615794442747556.post-80152148137154882082010-04-22T08:24:00.000-07:002010-04-22T08:27:52.560-07:00Celebrating What Counts<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii4_xkzGCi-gK2RUlZC9x0LdU-Pf4km4UxqXEpkmet9IJlSbd13veRA3s7N_6Chy5C1CXSHwjgcP25b7RdsxsTPzePAc6417JvjPMS_xuFiYQFuCkrVu7Vyhh3qq76YqAW-qZFWUvh3wU/s1600/4507973929_0ab9e0cedd_o.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 246px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii4_xkzGCi-gK2RUlZC9x0LdU-Pf4km4UxqXEpkmet9IJlSbd13veRA3s7N_6Chy5C1CXSHwjgcP25b7RdsxsTPzePAc6417JvjPMS_xuFiYQFuCkrVu7Vyhh3qq76YqAW-qZFWUvh3wU/s400/4507973929_0ab9e0cedd_o.jpg" alt="" id="BLOGGER_PHOTO_ID_5462983539929921298" border="0" /></a><br /><span style="font-family: arial;">5 months of chemo</span><br /><span style="font-family: arial;"> 5 blood transfusions</span><br /><span style="font-family: arial;"> 2 years of Rituxan therapy</span><br /> <br /><span style="font-family: arial;"> I never stopped shooting. </span><br /><br /><span style="font-size:78%;"><span style="font-family: arial;">Photo: Anna L. Conti</span></span><br /></div>David W. Sumnerhttp://www.blogger.com/profile/04040019398856208133noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-3680937461456217532009-12-14T17:43:00.000-08:002009-12-14T17:47:39.451-08:00Watch and Wait<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm2Oo4ANWkFc0A5lQn81yy5DCbPAZAmVABbeNckq1z3GUSPVuHc7AHvY_MrspXwZ6VABcwXWsBfn3_K80OPFVao1cArBGg3XD0m1GFDrcoQBlD5PRFEjCzNCzkDWHsOd4g1f6LIM1YuJkf/s1600-h/daves.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 322px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm2Oo4ANWkFc0A5lQn81yy5DCbPAZAmVABbeNckq1z3GUSPVuHc7AHvY_MrspXwZ6VABcwXWsBfn3_K80OPFVao1cArBGg3XD0m1GFDrcoQBlD5PRFEjCzNCzkDWHsOd4g1f6LIM1YuJkf/s400/daves.jpg" alt="" id="BLOGGER_PHOTO_ID_5415272887309200130" border="0" /></a><span style="font-style: italic;font-size:85%;" ><br />David the nurse and David the patient give two thumbs up to the end of Dave's 2.5 years of treatment for B-cell chronic lymphocytic leukemia. (He'll be monitored every 3 months until he needs treatment again.)</span></div><br />Well, we just crossed into new territory today. Dave is officially on "Watch and Wait", which is a term used by people with Leukemia, to describe the state where the progress of the disease is being monitored, but not treated. Treatment will resume when Dave starts having unacceptable symptoms or dangerous blood levels.<br /><br />It goes without saying that it's been a difficult 2.5 years since he was first diagnosed. But it was harder than I expected it to be. Seriously - I thought, since I've been through this kind of thing before with other family members and friends, that I was not going to have any major problems handling what needed to be done, and I think that part is true - with the help of friends and family, I stayed on track and was able to hold things together. What I didn't expect was the emotional toll. For the first year we were in a constant state of fear, uncertainty, and outright panic. But I had to ignore that and keep on keepin' on. After Dave's condition stabilized, and the situation became more routine, I went into a major depression, which I also pretty much ignored and didn't even recognize until about 8 months ago when I started coming out of it. (Note to friends: if you didn't hear from me for a couple of years, that's why.)<br /><br />Things are going great now and we're living for today, focusing on what's really important to us, in ways that we couldn't imagine before this all came down.<br /><br />Dave asked me to post this message from him:<br /><br /><span style="font-style: italic;">"Today, after two and a half years of infusions, transfusions, injections, and countless bottles of pills, I had my last infusion of Rituxan. Now I begin what I hope will be a long period of "watch and wait." I will be having blood drawn every three months, followed by a visit with the hematologist-oncologist.</span> <span style="font-style: italic;"><br /><br />Right now my numbers are great and they have been that way for over a year. The question is how long will they remain "great" without the Rituxan therapy? Based on my history and my good response to treatment, I expect to hold good numbers beyond the standard five year estimate. New treatments are coming up fast, so I also expect it will be easier to keep the CLL in check in the future."</span>Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com3tag:blogger.com,1999:blog-6074615794442747556.post-1742075035630870152009-09-23T20:34:00.000-07:002009-09-23T20:34:55.910-07:00Almost done with RituxanDave's next-to-last Rituxan infusion was last week and it was uneventful. His bloodwork still looks good. He gets his last treatment in December and then he'll probably be on "watch and wait" status until he needs more treatment. The blood clots in his leg are still a problem, but relatively minor when you consider all the other stuff he's been through the last couple of years.<br /><br />-- Posted From My iPod Touch<br /><br />Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-75807533498332770442009-08-10T20:45:00.000-07:002009-08-10T20:45:00.992-07:00Quick UpdateDave had an ultrasound of his leg today. The clot is still there (but we knew that.) He sees the oncology/hematologist on Wednesday, about the clot in his leg, and the CLL. More then. <br /><br />-- Posted From My iPod Touch<br />Anna L. Contihttp://www.blogger.com/profile/01636304182118944226noreply@blogger.com1tag:blogger.com,1999:blog-6074615794442747556.post-75908862835300467982009-05-30T19:32:00.000-07:002009-05-30T19:45:22.208-07:00Looking Forward to a June Vacation<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4rEBBCilasWVVrX1sIbXgrIfavw-cZ11vxUrEMh7qdXBfj64XLKodIrsHET4tcJ4ji7sesGTiO1-fFan4H76c_gxrPCM0ORFtlnsUrdiXthzljif5mZtUXNqQdUnwoZ3cmi0OmQQIhw0/s1600-h/3567432298_ab7a3a41aa_o.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4rEBBCilasWVVrX1sIbXgrIfavw-cZ11vxUrEMh7qdXBfj64XLKodIrsHET4tcJ4ji7sesGTiO1-fFan4H76c_gxrPCM0ORFtlnsUrdiXthzljif5mZtUXNqQdUnwoZ3cmi0OmQQIhw0/s400/3567432298_ab7a3a41aa_o.jpg" alt="" id="BLOGGER_PHOTO_ID_5341810622144018994" border="0" /></a><span style="font-family: arial;font-size:85%;" >Shooting with Darren Katin at SFMOMA Photo: ©2009 Anna Conti</span><br /><br /><div style="text-align: left;"><span style="font-family: arial;">Next week I'm at Kaiser for a Rituxan infusion and some blood tests. That leaves one more infusion this year then a revaluation with the Doc. Next January we may decide to end the infusions all together and put me on a watch and wait status. I'm not too sure how I feel about that right now, but I'm confident we will keep things under control what ever we do.</span><br /><br /><span style="font-family: arial;">So I'm focused on my photography and my up coming vacation. No trips this year. Staying close to home, spending some mornings out early shooting and hanging out in coffee houses.</span><br /><br /><span style="font-family: arial;">All is well.</span><br /></div></div>David W. Sumnerhttp://www.blogger.com/profile/04040019398856208133noreply@blogger.com2tag:blogger.com,1999:blog-6074615794442747556.post-60639276137367893712009-03-29T15:57:00.001-07:002009-03-29T16:04:48.523-07:00Keeping Busy<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu5xbeMZCpzrx3e4ycz9ZxbFZqDc6LnJ2LXiOE5h8Uqbz1_Nzr5t5ZIzVo7rSOWUAka0Yx5s-JnUt9SRHZWVVsLFjqGVDGCnJuSjZFA_guexYsaznYZ30pDVk1XEZMBBKUYfYD6gdUyYY/s1600-h/3363981451_22717c50e2_m.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 190px; height: 285px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu5xbeMZCpzrx3e4ycz9ZxbFZqDc6LnJ2LXiOE5h8Uqbz1_Nzr5t5ZIzVo7rSOWUAka0Yx5s-JnUt9SRHZWVVsLFjqGVDGCnJuSjZFA_guexYsaznYZ30pDVk1XEZMBBKUYfYD6gdUyYY/s400/3363981451_22717c50e2_m.jpg" alt="" id="BLOGGER_PHOTO_ID_5318747864998283922" border="0" /></a><br /><span style="font-family:arial;">CLL speaking, everything is going very well. My Rituxin infusions are down to four a year now. So I have two more this year and we will reassess in January. The idea of ending the Rituxin treatments is a bit scary right now, but if there is a chance of building a resistance to it over the long term, it would make more sense to save it for when the CLL cells start growing. We'll make those decisions when the time comes.</span><br /><br /><span style="font-family:arial;">Anna and I have been keeping a hectic social calendar lately: museums and gallery shows, dinners, a lot of hanging out with the photographers and artists of the <a href="http://www.flickr.com/groups/blow-up/">Blow-Up!</a> group, family visits. You can check it all out on <a href="http://www.facebook.com/home.php?ref=home#/profile.php?id=589005847&ref=name">Facebook</a>.</span><br /><br /><span style="font-style: italic;font-family:arial;" >The photo above is from an evening at Noc Noc, on Haight Street. A bunch of Blow-Up! members got together to wish Bon Voyage to fellow member <a href="http://www.flickr.com/photos/tonyremington/">Tony Remington</a>. Tony is in the Philippines working on a project on poverty and relief efforts.</span><br /><br /><span style="font-style: italic;font-size:85%;" ><span style="font-family:arial;">Photo: ©2009 David W. Sumner</span></span><br /><br /><span style="font-family:arial;">Caio for now.</span>David W. Sumnerhttp://www.blogger.com/profile/04040019398856208133noreply@blogger.com0tag:blogger.com,1999:blog-6074615794442747556.post-18367255461999355972009-02-05T20:03:00.000-08:002009-02-05T20:06:40.064-08:00Making Adjustments<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBSeRjM4y61aBwbof9mEA-uZ0s_YAOkrKOB5pPgZYvJuxqgbqdtGat2gb30qbCzTnViyz_gXOv48TA7VvyY_RhoLuDtLI1IgayLog2z4E-f6kjjpESpw8-GID3uB6GhY7IaxmXGt0_3YI/s1600-h/P1170994.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 391px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBSeRjM4y61aBwbof9mEA-uZ0s_YAOkrKOB5pPgZYvJuxqgbqdtGat2gb30qbCzTnViyz_gXOv48TA7VvyY_RhoLuDtLI1IgayLog2z4E-f6kjjpESpw8-GID3uB6GhY7IaxmXGt0_3YI/s400/P1170994.jpg" alt="" id="BLOGGER_PHOTO_ID_5299530391569195618" border="0" /></a><span style="font-size:85%;"><span style="font-family: arial;">Shooting along Market and Stockton after a morning at Kaiser.</span><br /><span style="font-family: arial;">Photo: ©2009 Anna L. Conti</span></span><br /><br /><div style="text-align: left;"><span style="font-family: arial;">This month is the one year mark for my Rituxin maintenance and time to make a decision. </span><br /><br /><span style="font-family: arial;">I have to say Dr. Liu is great . He listens, he answers any and all questions and is very detail oriented. He appreciated the fact that Anna and I have done some research and know a bit of what we are talking about. </span><br /><br /><span style="font-family: arial;">The three of us talked about what we had learned from the recent ASH and LLS conferences and agreed that since there are no hard conclusions regarding a practice of Rituxin maintenance we had several options, any of which Dr. Liu would be comfortable with. So I pretty much decided to reduce the frequency of infusions and will now be going in for Rituxin every three months rather than every two months. At the end of the year we will reassess.</span><br /><br /><span style="font-family: arial;">My numbers are really good and holding. There are several new drugs and monoclonal antibodies in test and trial right now. There's a good chance I'll be able to deal with my CLL as a manageable for a good long time.</span><br /></div></div>David W. Sumnerhttp://www.blogger.com/profile/04040019398856208133noreply@blogger.com1