Friday, September 30, 2011

Update From At Sea

Actually this post is sent from in port at Ensenada Mexico but "at sea" sounds better.



A new post to my blog 9/24/11.
I am writing this on the Sapphire Princess as we await debarkation from the Port of Los Angeles. Tomorrow, we stop at  Santa Barbara, San Francisco on Tuesday, San Diego on Thursday and beautiful downtown Ensenada on Friday. 
I had my appointment with Dr Flam on Wednesday. My hemoglobin is down to 11.2, my white count down to 4300, but my platelets are normal. I told him I am having mild shortness of breath, which he attributes to anemia. He was disappointed that I have continued to take zinc for my saliva production, although he never asked me to stop it. He says zinc can promote anemia and low WBC by interfering with copper metabolism. I have stopped the zinc.
I am also having a little more discomfort related to eating and drinking. I think this is related to my esophagus. I think it is most likely due to scarring from the radiation and not due to recurrence of Merkel Cell Carcinoma, but this will await imaging and other studies. I would like to postpone any more evaluations until I get back from Montreal on October 17. 
Meanwhile I have planned to work about 3 half days per week while in Fresno.
My neuropathy has not changed. It is manifest by relatively painless numbness in my hands and feet. there is dryness of my hands and loss of fine motor coordination. I have had a few episodes of dizziness on standing up (postural hypotension). Once, I had to quickly sit down or I would have lost consciousness. Dr. Flam says the neuropathy can effect the autonomic nervous system and this may account for it. My blood pressure was 90/65 at his office. I am to increase the amount of salt in my diet.
I have been taking a Vitamin B product advertised on the internet said to have a 90% effectiveness in relieving peripheral neuropathy. 
Week 1.  2 capsules twice daily
Week 2.  3 capsules twice daily
Week 3. 2 capsules 4x daily
Week 4 . 3 capsules 3x a day
Week 5.  Well, you get the idea. the dose increases until there is a response or you give up.
A 3 month supply of 360 capsules cost over $140. At this rate it isn't even a 2 month supply.
I have just started week 3, without any improvement.
There is supposed to be a money back guarantee. Without much faith in the product, I have little to lose by trying. Dr. Flam did recommend Vitamin B complex for neuropathy.
Well, it is time for the mandatory safety drill. This is our 14th cruise. I think I know what they are going to say.
For the next week, I plan to concentrate on having a great time and put this Merkel business out of my mind.

September 29, 2011
This cruise has been delightful. A chance to get away from the day to day activities. There is plenty of food, and my appetite has been pretty good. My taste buds are almost normal and my dry mouth has improved. I continue to have mild symptoms of mild pain presumably in the radiated area of my lower esophagus, which is worse on eating. The 
food does not stick in the esophagus, and it does not diminish my appetite. I also have less exercise tolerance than I did, and when I take a deep breath, I almost feel like I need to cough. 
There will be a big meeting in Seattle involving researchers and patients with Merkel Cell carcinoma, on Tuesday, October 25, which Judy and I would like to attend. Because of this and my symptoms, I have called Dr. Dan Stobbe and inquired about the timing of a PET/CT after radiation. He said I need to wait six weeks. Since my treatments ended August 15, I can have the scan. I have arranged this with him for October 5, next Wednesday. I am waiting to hear back from Dr. Flam to get the official approval of the study. I am hoping to see Dr. Nghiem, particularly if my scans are positive, around the time of this meeting.

September 30, 2011
I thought I could put all thoughts of Merkel Cell carcinoma out of my mind for the week of the cruise but this is not possible. Once you have a diagnosis of cancer, every little ache or pain makes you think about the spread of the cancer as the cause. I have to know sooner rather than later whether my symptoms are caused by scarring or by Merkel cell carcinoma growing back after chemo and radiation. All is arranged with Valley Metabolic Imaging and with Dr Flam to proceed on Wednesday.
This will leave me with a very busy week.
Saturday: Fly back to Fresno
Sunday: Work a half day reading CT scans at Kaiser.
Monday: Bridge in the afternoon
Tuesday: Work a half day at Kaiser. Appointment with Dr. Weinberg (ENT) for follow up on my hearing loss.
Wednesday; PET/CT, ZZTop at the Fresno Fair7
Thursday: Work a half day at Kaiser
Friday: Bridge, Yom Kippur
Saturday: Work a half day at Kaiser (I am not very religious, but I hope to go to Yertzeit services in memory of my father in the afternoon)
Sunday: rest
Monday: Off to Montreal for a week.

1 comment:

  1. Doc Dave, You are maintaining a very active schedule for one who has been subjected to both chemo and radiation. I pay very close attention to your posts because I'm slightly benind your treatment schedule (finished chemo Jul 21 and radiation Sep 29). Looking forward to transition from Ensure and Activia to real food, but no measureable abatement in throat pain and neck blistering. Georgemurraymerkel

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