My Battle with Merkel Cell Cancer

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my lower esophagus. An experimental treatment of a low dose of radiation was attempted in the hopes of stimulating my immune system to destroy the mass. A follow-up CT scan showed the mass only slightly smaller, but a new tumor mass appeared in the small bowel. This was removed by laparoscopic surgery. We then proceeded to chemotherapy and after 3 cycles of Cisplatin and VP16, the tumor was barely identifiable. No other tumor site could be seen. The residual tumor site was treated with radiation and chemotherapy used to enhance the radiation. This was Taxotere. After 3 doses of the Taxotere I was too sick to continue taking it and it was stopped. The result of all this is that, to my knowledge, there is no residual tumor in my body at this time. That's my story and I'm sticking to it. I am recovering from the Taxotere gradually. My WBC have risen to 2900 from 1900. My Hemoglobin has decreased to 9.9 gms, and I was given a shot of Procrit for that. In my last post, I talked about inability to eat. I have been on TPN (Total Parental Nutrition) which is basically intravenous feedings. On the first night after 3 days of 2 liters of fluid replacement and TPN, I developed ankle swelling. This rapidly resolved with elevation of the feet. I was having severe pain and burning in the lower chest when eating or drinking. This has largely resolved. I have had episodes of diarrhea, which have not resolved. Food tastes terrible, as if I have anorexia nervosa. This is due to the chemo and should begin to resolve. I am drinking 2-3 bottles of Boost Plus daily adding 700-1050 calories per day. Yesterday, I had 2 eggs. Today, I ate macaroni. I expect no more than 3 weeks total of TPN. This TPN is no simple matter. It began with delivery of 2 large boxes of material for one week's supplies. This included 7 bags of the fluid which looks like pale skim milk and has an odor almost like breast milk. 7 vials each of vitamins and other additives also were included. These need to be refrigerated and removed 1-2 hours before use. I set an alarm on my iphone to remind me. A small infusion pump about the size of a paperback novel provides the power.It runs on a 9 volt battery which needs replacement daily. A disposable device is to lock in place which is part of the tubing that goes from the bag to my Medport. The procedure is as follows. The vitamins are added to the bag. The tubing is locked into the pump. The pump will often complain that it is not locked correctly. The pump is then primed. The port is flushed, and then the tubing attached to the port. The infusion is then ready to start. Needless to say, many things can go wrong. One night, the infusion pump thought it was still pumping from the previous night's residual and delivered only about 30 cc instead of 1800 cc. I finally have it figured out, but a person untrained in medical procedures will find it easy to go wrong. I also need to check my glucose 4 times a day. The device for that needs little blood. It is almost painless, but the first night, after 2 tries and error messages, I deferred further testing to the next day. I think I am still doing something wrong or there is a flaw in the device as far as sterility is concerned. More on this in my next post. I learned about the "Donut Hole" Because I have reached the donut hole in my Medicare Part D insurance, I am paying the full cost of this TPN. In another post, I hope to discuss the complexities of the donut hole and the inability to get straight answers from providers, one of whom told me it would be $4 per day and then called back and said $100 plus daily not including supplies. Total about $1000 per week. I can afford to pay (in spite of the falling stock market), but it is a powerful incentive to get off the TPN as soon as possible. What happens to those who don't have the money to pay? My Battle with Merkel Cell Cancer 89
90 Posted by David Shuster at 07:43PM (-07:00) Status After Final Radiation Treatment Wednesday, August 17, 2011 My last radiation treatment was Monday, Aug 15. Take me out of the oven. I'm all done. My esophagus is cooked. In fact it feels like it was burned. Yesterday was my visit to Dr. Flam. See the rant below. My labs were OK except for my Hemoglobin which was 9.8. I needed another shot of Procrit, which insurance wouldn't pay for as the appointment was 6 days and not 7 days after my last shot. No big deal. I had that done today. I have gained 4-5 pounds since my last appointment and we agreed to stop the TPN, tapering it off with the last treatment on Friday night. Saturday morning, I get to remove the Huber needle myself and will have just skin covering my port. I have had some burning in my esophagus and heartburn at night. This should resolve as my esophagus heals. Food still has no taste. I seem to have a form of anorexia nervosa. My tongue was white and Dr. Flam diagnosed Candidiasis (Thrush). He put me on Mycelex, Generic. It comes in "lozenges", which are actually white chalky pills to be sucked until they dissolve, three times daily. Surprisingly, they are not as obnoxious as they look. Perhaps getting rid of the candida will help restore my sense of taste. I have no ankle or foot swelling. My blood sugars have been behaving, as I have been self-testing as required 3 times daily. I have been drinking up to 3 bottles of Boost Plus daily and eating a small amount in addition. I have noticed that my hands are always dry and there is slight numbness in my fingers. I have become clumsy, dropping things and with slight tremor with small motor tasks. (Including typing this). This seems to be a mild peripheral neuropathy as a result of the chemo. I think I have similar but less obvious neuropathy in my feet. Dr. Flam told me to take Vitamin B complex for this but I doubt this will make a difference, as I have been taking multivites all along and vitamins are added to the TPN. Nevertheless, it couldn't hurt. Dr. Flam offered two possible plans for follow-up. CT in 1 month if I absolutely had to know if all this worked as soon as possible. PET/CT in 2 months as the PET would not be accurate because of residual inflammation in 1 month. I prefer to wait until after our cruise at the end of September so will have the PET/CT in mid October. Meanwhile I see the nurse in 1 week and Dr. Flam in 2 weeks. Sunday afternoon, we had the Fresno Shusters for birthday cake to celebrate Judy's birthday. That was a nice distraction. Last night I went to our monthly poker game, It was great to get out even with the TPN running. I left early, ahead by 80 cents. Before I left, I had a small slice of Mary Callender Lemon pie. It tasted like they forgot to put the sugar in it. Friday, I plan to return to the Bridge Club. My Battle with Merkel Cell Cancer
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My Battle with MCC My Battle with M
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Contents I Discover a Mass in my Fa
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A Brief break, Then 3-5 Months of C
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Esophageal Dilatation: My Experienc
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I Discover a Mass in my Face Friday
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I Have Surgery Saturday, July 24, 2
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Posted by docshu at 10:54AM (-07:00
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In the absence of a tumor mass to i
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Friday, July 2: I plan to work in t
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I plan to add photographs to this b
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deformity and a facial droop on his
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of taste. I have now completed 11 o
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there. They visited from Valencia,
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SARA, age 3, The Kissing Doctor Wha
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Hooray. I passed!!! Friday, August
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survives. Posted by docshu at 08:49
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Below is a photo of our dog, Rocky
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Not Much New Thursday, September 16
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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
Page 64 and 65: Here is a photo of Alex and yours t
Page 66 and 67: The bad news is that the experiment
Page 68 and 69: This is the best photo I could find
Page 70 and 71: the symptom gets worse. The generic
Page 72 and 73: DNA present in ~80% MCC tumors MCPy
Page 74 and 75: Rocky woke us up this morning with
Page 76 and 77: =Bingo!=we were the next ones seate
Page 78 and 79: My colon feels like It wants to blo
Page 80 and 81: In any event, Dr Flam says I should
Page 82 and 83: No More Chemo (for now) Tuesday, Ju
Page 84 and 85: The Plan is Finalized Tuesday, July
Page 86 and 87: Not a Good Day Today, + Real Estate
Page 88 and 89: was down. I had no appetite. No foo
Page 92 and 93: Here is the rant. My appointment wa
Page 94 and 95: peripheral neuropathy is unchanged.
Page 96 and 97: have stopped the zinc. I am also ha
Page 98 and 99: Axial CT Image Here, we see a large
Page 100 and 101: I'm Back! Tuesday, October 18, 2011
Page 102 and 103: My brother Jon Shuster arrived Thur
Page 104 and 105: sessions, and for the first time si
Page 106 and 107: the skull. When the catheter was in
Page 108 and 109: to a pediatrician, who said that th
Page 110 and 111: PM. I will post again when I get ho
Page 112 and 113: Posted by David Shuster at 09:56AM
Page 114 and 115: obesity and emaciation." One of the
Page 116 and 117: Last night, I had the most sleep I'
Page 118 and 119: done frequently since having the pr
Page 120 and 121: they did help, they didn't help eno
Page 122 and 123: I hope that my dad is well enough t
Page 124 and 125: WBC count 4.5-11.0 K/mcL Platelet 1
Page 126 and 127: It is such great news. There are do
Page 128 and 129: so he can sleep. 2:00 Dana takes Be
Page 130 and 131: Cicero says of the Sword of Damocle
Page 132 and 133: evealed Staph Aureus, but not the a
Page 134 and 135: Fresno Imaging Center Medical Group
Page 136 and 137: Obituary Saturday, April 21, 2012 T
Page 138 and 139: 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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