My Battle with Merkel Cell Cancer

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Posted by docshu at 10:54AM (-07:00) Gary Finds the MCC Group and Dr Nghiem Saturday, July 24, 2010 June 14, 2010. Much has happened. Through the resources and support in the MCC group, I have been in contact with Dr Ngheim of the University of Washington who is a world exoert in this disease. He was good enough to call me Saturday morning, June 12, and spent 45 minutes on the phone with me. The good news is that I have been spared a radical neck dissection, a procedure which involves an extensive removal of lymph nodes in the neck, together with the sternocleido-mastoid muscle, the internal jugular vein, a nerve which supplies muscles to the shoulder and risk to other important nerves such as the vagus and the recurrent laryngeal nerve. In addition, chemotherapy is not recommended as this is not shown to be helpful at this stage of the disease. In fact it may be detrimental as it damages the immune system which is needed to fight the viral component of thes disease. I will need radiation treatment alone for the time being. The bad news is that at this stage, the risk of distant disease is 50% and the risk of local recurrence is 20%. Tomorrow, I will contact Dr Teitelbaum to cancel surgery. I will call Dr Flam to let him know of these developments. I will set up appointments to see Dr Ngheim for Thursday, June 24, as well as Dr Parvathaneni, the Radiation Oncologist, for June 23. I will need to see Dr Mahdu John in Fresno on Monday or Tuesday, so he can plan the treatment under the direction of Dr Parvathaneni. Additionally there are exciting developments having to do with tumor antigens and injections of interferon into the tumor. Dr Ngheim has suggested injecting the site where the tumor was removed from as there is likely to be residual tumor there. I will need flights and hotel. The plan is to leave Wednesday early AM and return Friday late or Saturday. Mt first surgical wound is healing well, but there is some edema around my ear and swelling of the incision. Little serious pain and I am off all pain meds. I must give great credit to my son, Gary who researched out the disease and made the initial contact with the MCC group and got me connected with Dr Ngheim. Without his help, I would still be nervously awaiting a major surgery followed by chemotherapy, all delaying the most useful treatment, radiation therapy. My Battle with Merkel Cell Cancer 13
14 Posted by docshu at 11:06AM (-07:00) We Go on a Cruise to Alaska Saturday, July 24, 2010 June 13,2010 We leave on a long-planned cruise to Alaska, taking our nine tear old granddaughter Eva. This cruise is a great distraction, but it is difficult to stop obsessing about my condition. I often become tearful. I still am not sleeping well. Judy is very supportive but she is also very upset by all this. Tuesday, June 15 2010 We dock in Ketchikan, Alaska. I get up early because I will have cell service. I have a brief breakfast,go to the internet café, where there is good wireless signal, open my email and the phone rings. It is Dawson, the scheduler for Dr Ngheim. We have a long discussion during which time he gets Dr Ngheim conferenced in from Washington DC. The bottom line is that I will need to go to Seattle Tuesday to see both Dr N and Dr P Wednesday. In addition, I will need to stay until Saturday so Judy can be shown how to inject the Beta Interferon. I will need to get my insurance to approve it as it is an off-label use for the drug. The cost is $3000, but I will pay if necessary. I call Dr Teitelbaum’s office and tell them I need to cancel the surgery and to get copies of my records for me to pick up Monday. Needless to say they call me back later in the afternoon to schedule the surgery. I call Dr Flam and he has reservations about bypassing the surgery. Dr Teitelbaum also has such reservations when he returns my call later in the day. I promise both of them I will show them the literature I have from Dr Ngheim to support this decision. I also arrange to pick up all biopsy reports from Dr Tashjian’s office. Thursday June 17, 2010. I am in better spirits after a good day in Juneau. My granddaughter Eva is such a delight to be with that I am able to get my mind off this. We watch her favorite movie including deleted scenes, and she has seen it so often she quotes the dialog with the actors. Ironically, the movie is The Titanic. I have a large to do list for when I get home. I will see both Dr Ngheim and Dr Parvathaneni Wednesday morning and have arranged flights leaving Fresno late Tuesday arriving in Seattle Tuesday at 10:45 PM. Ironically, the flight back from the cruise originates in Seattle, nut Dr Nghiem can not see me until Wednesday and we decide we need to get Eva back to Fresno. I have booked a room at SCCA House departing Saturday. I may receive injections of Beta Interferon into the site of the excised tumor mass as there is evidence this may control the disease in immune responsive patients. My Battle with Merkel Cell Cancer
Page 1 and 2: My Battle with MCC My Battle with M
Page 4 and 5: Contents I Discover a Mass in my Fa
Page 6 and 7: A Brief break, Then 3-5 Months of C
Page 8 and 9: Esophageal Dilatation: My Experienc
Page 10 and 11: I Discover a Mass in my Face Friday
Page 12 and 13: I Have Surgery Saturday, July 24, 2
Page 16 and 17: In the absence of a tumor mass to i
Page 18 and 19: Friday, July 2: I plan to work in t
Page 20 and 21: I plan to add photographs to this b
Page 22 and 23: deformity and a facial droop on his
Page 24 and 25: of taste. I have now completed 11 o
Page 26 and 27: there. They visited from Valencia,
Page 28 and 29: SARA, age 3, The Kissing Doctor Wha
Page 30 and 31: Hooray. I passed!!! Friday, August
Page 32 and 33: survives. Posted by docshu at 08:49
Page 34 and 35: Below is a photo of our dog, Rocky
Page 36 and 37: Not Much New Thursday, September 16
Page 38 and 39: Posted by docshu at 05:09PM (-07:00
Page 40 and 41: That's Jon on my right and Robert o
Page 42 and 43: Nghiem in Seattle on November 30. U
Page 44 and 45: Posted by docshu at 07:20PM (-08:00
Page 46 and 47: ook last-minute, as I have canceled
Page 48 and 49: Sandy, and from my sister Ellie, wi
Page 50 and 51: out. I do not have a definite date
Page 52 and 53: old. We had a very nice visit with
Page 54 and 55: I continue to work, although my sch
Page 56 and 57: Surgery Wednesday 10:00 AM Monday,
Page 58 and 59: do very much. On the other hand, I
Page 60 and 61: circumference. What that all means
Page 62 and 63: Montreal and on my return, have a p
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Here is a photo of Alex and yours t
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The bad news is that the experiment
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This is the best photo I could find
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the symptom gets worse. The generic
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DNA present in ~80% MCC tumors MCPy
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Rocky woke us up this morning with
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=Bingo!=we were the next ones seate
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My colon feels like It wants to blo
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In any event, Dr Flam says I should
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No More Chemo (for now) Tuesday, Ju
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The Plan is Finalized Tuesday, July
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Not a Good Day Today, + Real Estate
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was down. I had no appetite. No foo
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my lower esophagus. An experimental
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Here is the rant. My appointment wa
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peripheral neuropathy is unchanged.
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have stopped the zinc. I am also ha
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Axial CT Image Here, we see a large
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I'm Back! Tuesday, October 18, 2011
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My brother Jon Shuster arrived Thur
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sessions, and for the first time si
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the skull. When the catheter was in
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to a pediatrician, who said that th
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PM. I will post again when I get ho
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Posted by David Shuster at 09:56AM
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obesity and emaciation." One of the
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Last night, I had the most sleep I'
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done frequently since having the pr
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they did help, they didn't help eno
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I hope that my dad is well enough t
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WBC count 4.5-11.0 K/mcL Platelet 1
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It is such great news. There are do
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so he can sleep. 2:00 Dana takes Be
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Cicero says of the Sword of Damocle
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evealed Staph Aureus, but not the a
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Fresno Imaging Center Medical Group
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Obituary Saturday, April 21, 2012 T
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manner of other names, as my dad di
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Eva had asked that I tell him she l
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document the final part of that tra
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Subject: docdave back at hospital T
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We got word that the ER doctor want
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used it), some stuff for my mom, an
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your brain and body work. As the ox
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who seemed competent and caring. Th
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in a voice I'd never heard her use
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In facing death, dad decided to tru
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My Battle with Merkel Cell Cancer

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