Tuesday, February 22, 2011

Review of my Merkel Journey to Date

May 6, 2010, about three months before my 70th birthday, I discover a mass in my left cheek.
I have a CT scan of my face and neck, links to images below.


May 13 2010 I have a fine needle biopsy, false negative report. This delays surgery until June 3 2010, our 48th anniversary. 

June 7, 2010, I get the bad news.
Why the false negative, you may ask. I think it was a combination of factors. The tissue sample was wrongly sent as a parotid gland biopsy when in fact it was from a lymph node. It was read by a pathologist who had probably never seen a Merkel Cell carcinoma on a skinny needle biopsy.  I have not asked for a review of the slides in this case, as it is water under the bridge. However, if the correct diagnosis was made, it might have resulted in sparing me the surgery of June 3.
A search for a primary site fails. Radical surgery is planned, possibly with chemotherapy and then radiation.

July 24,2010 My son Gary finds the Merkel support group on the internet, and I am in contact with Dr Nghiem. I cancel surgery and plan on radiation treatment alone.

June 23, 2010. I visit Dr Nghiem in Seattle.

Aug 3, 2010 Radiation treatment continues. Here is a sample post.

Aug 17, 2010. One day before my 70th birthday, I complete radiation treatments.

My circulating Merkel count was ZERO and I am optimistic that the disease has been vanquished. Life returns more or less to normal and I continue to heal from the radiation treatments. We plan a cruise to hawaii for December, 2010, but on November 24, 2010, I have a follow-up PET/CT. Disaster! There is a large mass in my chest near my heart and esophagus, but not in the lung.

Here are images from the scans.

I visit Dr Nghiem again. My circulating Merkel cell count has risen to 13 cells per 10 cc of blood.
He proposes a unique treatment. A small dose of radiation to the tumor, about 10% of the usual treatment, all in one session. The object is to unmask the antigens associated with this tumor and allow my immune system to combat the tumor.
I have the treatment. My Merkel Cell count is down to 1.

We took a cruise to Mexico. My count dropped to ZERO again. We now plan a cruise to Hawaii, the one we had to cancel. This time I have learned my lesson. I will have a follow-up CT scan AFTER we get back from the cruise.
So, how do things stand now?
My weight is stable. I feel OK but not great. I have been having some vague discomfort in the abdomen, not enough to slow me down, but enough to make me worry. Of course with this disease, you have to worry. My best guess as to my prognosis is 20% chance of surviving 2 years from some date. I don't know if it is measured from the first appearance of symptoms, first diagnosis or the day I discovered I am stage IV. The statistics for stage IV are that. However if you make it through 2 years, the chance of long term survival is good.
I continue to work, although my schedule is cut back. I continue to play bridge and I continue to enjoy life.
For those afflicted with this disease, feel free to contact me through this blog or email me at dave@shuster.com

Friday, February 4, 2011

Good News. The Circulating Merkel Cell Count dropped to ZERO

It can't go lower than 0. This can't be bad news. I can't let myself be too excited about this because the count was 0 before my initial radiation treatment and I still developed a distant recurrence, but this is the best possible result.
I had a chest x-ray and it doesn't show any large mass, although the location is such that it would take some growth from the previous to be visible.
There are no lung metastases visible. In fact my chest x-ray looks like that of a 40 year old.
We had a very nice visit with my brother Jon last week-end and even got in a bridge game before he left.
My sister Ellie will visit from Edmonton next Monday, and our middle son Brian will visit the following week.
Comparing the CT image to the chest X-ray suggests a barely visible edge of the mass. This is a very questionable abnormality.
I would like to thank everyone for their kind words of encouragement and prayers. I am not a religious person but every little bit helps.