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have stopped the zinc. I am also having a little more discomfort related to eating and<br />
drinking. I think this is related to my esophagus. I think it is most likely due to scarring<br />
from the radiation and not due to recurrence of <strong>Merkel</strong> <strong>Cell</strong> Carcinoma, but this will await<br />
imaging and other studies. I would like to postpone any more evaluations until I get back<br />
from Montreal on October 17. Meanwhile I have planned to work about 3 half days per<br />
week while in Fresno. <strong>My</strong> neuropathy has not changed. It is manifest by relatively<br />
painless numbness in my hands and feet. there is dryness of my hands and loss of fine<br />
motor coordination. I have had a few episodes of dizziness on standing up (postural<br />
hypotension). Once, I had to quickly sit down or I would have lost consciousness. Dr.<br />
Flam says the neuropathy can effect the autonomic nervous system and this may<br />
account for it. <strong>My</strong> blood pressure was 90/65 at his office. I am to increase the amount of<br />
salt in my diet. I have been taking a Vitamin B product advertised on the internet said to<br />
have a 90% effectiveness in relieving peripheral neuropathy. Week 1. 2 capsules twice<br />
daily Week 2. 3 capsules twice daily Week 3. 2 capsules 4x daily Week 4 . 3 capsules 3x<br />
a day Week 5. Well, you get the idea. the dose increases until there is a response or you<br />
give up. A 3 month supply of 360 capsules cost over $140. At this rate it isn't even a 2<br />
month supply. I have just started week 3, <strong>with</strong>out any improvement. There is supposed to<br />
be a money back guarantee. Without much faith in the product, I have little to lose by<br />
trying. Dr. Flam did recommend Vitamin B complex for neuropathy. Well, it is time for the<br />
mandatory safety drill. This is our 14th cruise. I think I know what they are going to say.<br />
For the next week, I plan to concentrate on having a great time and put this <strong>Merkel</strong><br />
business out of my mind.<br />
September 29, 2011 This cruise has been delightful. A chance to get away from the day<br />
to day activities. There is plenty of food, and my appetite has been pretty good. <strong>My</strong> taste<br />
buds are almost normal and my dry mouth has improved. I continue to have mild<br />
symptoms of mild pain presumably in the radiated area of my lower esophagus, which is<br />
worse on eating. The food does not stick in the esophagus, and it does not diminish my<br />
appetite. I also have less exercise tolerance than I did, and when I take a deep breath, I<br />
almost feel like I need to cough. There will be a big meeting in Seattle involving<br />
researchers and patients <strong>with</strong> <strong>Merkel</strong> <strong>Cell</strong> carcinoma, on Tuesday, October 25, which<br />
Judy and I would like to attend. Because of this and my symptoms, I have called Dr. Dan<br />
Stobbe and inquired about the timing of a PET/CT after radiation. He said I need to wait<br />
six weeks. Since my treatments ended August 15, I can have the scan. I have arranged<br />
this <strong>with</strong> him for October 5, next Wednesday. I am waiting to hear back from Dr. Flam to<br />
get the official approval of the study. I am hoping to see Dr. Nghiem, particularly if my<br />
scans are positive, around the time of this meeting.<br />
September 30, 2011 I thought I could put all thoughts of <strong>Merkel</strong> <strong>Cell</strong> carcinoma out of my<br />
mind for the week of the cruise but this is not possible. Once you have a diagnosis of<br />
cancer, every little ache or pain makes you think about the spread of the cancer as the<br />
cause. I have to know sooner rather than later whether my symptoms are caused by<br />
scarring or by <strong>Merkel</strong> cell carcinoma growing back after chemo and radiation. All is<br />
arranged <strong>with</strong> Valley Metabolic Imaging and <strong>with</strong> Dr Flam to proceed on Wednesday.<br />
This will leave me <strong>with</strong> a very busy week. Saturday: Fly back to Fresno Sunday: Work a<br />
half day reading CT scans at Kaiser. Monday: Bridge in the afternoon Tuesday: Work a<br />
half day at Kaiser. Appointment <strong>with</strong> Dr. Weinberg (ENT) for follow up on my hearing<br />
loss. Wednesday; PET/CT, ZZTop at the Fresno Fair7 Thursday: Work a half day at<br />
Kaiser Friday: Bridge, Yom Kippur Saturday: Work a half day at Kaiser (I am not very<br />
religious, but I hope to go to Yertzeit services in memory of my father in the afternoon)<br />
Sunday: rest Monday: Off to Montreal for a week.<br />
Posted by David Shuster at 10:34AM (-07:00)<br />
<strong>My</strong> <strong>Battle</strong> <strong>with</strong> <strong>Merkel</strong> <strong>Cell</strong> <strong>Cancer</strong><br />
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