Latest Update

Today was the day for my follow up visit with Dr. Flam.
My labs are stable. My shortness of breath is slightly worse, but I can walk at a good pace and climb stairs. (thank goodness for that as we live in a 2 story home). I am not short of breath at rest, and I can sleep lying flat. I have the unusual symptom of being unable to speak for very long without coughing. I can not take a deep breath without coughing. This slows me down at work when dictating radiology reports and limits my ability to carry on a conversation. The treatment advocated by Dr. Flam is a short course of steroids, beginning at a high dose and rapidly tapering over six days. because of the immunosupressive effect of corticosteroids, I will run this past Dr. Nghiem. In the meanwhile he wants me to take a cough suppressant containing codeine. As there is the Fresno Sectional Bridge Tournament this weekend, I will delay this until the Bridge tournament is over.
My neuropathy is unchanged, and when the supply of pills I obtained from a web site promising 90% success rate runs out, I will discontinue them. I would doubt the accuracy of the 90% number.
My weight is stable and my hair is growing back. It is almost long enough to brush.

Here I am, no longer hairless although certainly showing more baldness than when this ordeal began.


I promised to write about my visit to Montreal, so here it is,
My Mother is doing as well as can be expected given her age and loneliness after the death of my Father after 65 years of marriage. Although she has been a widow for about 5 years, who can blame her. Her appetite is not good, but the food at Place Kensington is not the best, so she doesn't eat very much.
Here is the question. At 62 lbs, and at the age of 94, Is there another human on this planet whose weight in pounds is less than 2/3 of her age in years? Somebody not effected by some sort of developmental dwarfism?
Bluma and Lenny Clayman were wonderful hosts for the first 3 days I was in Montreal. Lenny picked me up at the airport and hardly complained about the plane being late. He cooked dinners and drove me around. Truly, they are the best of friends.
My brother Jon Shuster arrived Thursday and we shared a room at the Residence Inn in Westmount. We had a chance to spend time together and catch up. He lives in Florida and We are in California so we don't get to visit very often.
My sister Ellie Shuster came with her daughter Cheryl Cruikshank and grandson David (not supposed to be named after me). He is about 14 months and very cute. He had been walking only 2 weeks but getting around very well. 
My brother Robert is in Montreal and is the go to person for my mother. We got to spend time with him Saturday and Sunday.

We met Alex and her Mom and Dad Saturday for a family Chinese lunch. She is very cute. Her Mom Andrea and dad Ben Urovitch are doing a great job parenting her.

From L to R: Me,Cheryl,David,Andrea,Alex and Ben.
We got to spend time with Robert and his wife Gertie Sunday for brunch.
Afterwards, Mom, Jon, Robert and I sat down for a game of bridge. My mother held her own most of the time.
Friday evening was the McGill Reunion Dinner.It was at the Omni Hotel and one had to step over the protesters to get inside. This did not seem to make much difference as the place was jammed. I sat at a table with old classmates from the Honours Math Physics class. It was the 50th reunion.
Ralph Roskies, who organized the table was stuck first in Newark and then at immigration and didn't make it. Doug Beder was there. He and Ralph were instrumental in my career change from Physics to medicine. I knew I could never compete with them.
David Mayerovitch, Barry Frank and Lorne Mendel were also there.
On Saturday night, we had a mini reunion of members of the McGill 66 medical school class.
About 15 members were present. Hopefully I will be there for the 50th when many more classmates have promised to be there. Thanks to Peter Humphreys for organizing this. We had a delicious dinner at Le Caveau, near the Mcgill campus. It was raining very hard after dinner, and I thank Arnold Zidulka for the ride back to the hotel.
We had a Friday brunch at Place Kensington, for which I ordered food from Snowdon Delicatessen.
We had Montreal smoked meat, pickles, chopped liver, eggplant salad, cole slaw party sandwiches and potato knishes. Oh wait! Ellie left the knishes in the oven and they burned to a crisp. David ate half the party sandwiches (not me).  Still, there was plenty to eat and some leftovers.
Many family members took the time to be there. 

Peripheral Neuropathy: An Explanation

I have symptoms of peripheral neuropathy, which I would like to discuss in detail.

This is a condition in which there is damage to peripheral nerves, both sensory and motor. The common causes are diabetes and chemotherapy but there are other causes. At its worst, patients can develop severe arthritis in the feet which is caused by repeated trauma, because the protective mechanism of pain sensation is not present. This is termed "Charcot Joints".

Symptoms include pain and numbness in the hands and feet. The distribution in the feet particularly and to a lesser extent in the hands is described as "Stocking numbness". This is numbness that goes from some point in the leg to the toes like a stocking or sock, rather than in the distribution of peripheral nerves and allow distinction from other causes such as a slipped disc or nerve injury or in the hands to distinguish from neck disc or carpal tunnel syndrome.

In my case. there is also dryness and clumsiness of the hands due to motor nerve involvement and  more subtle sensory deficiencies such as loss of proprioception which allows your brain to know where your fingers are. I find simple tasks somewhat challenging, such as turning the pages of a newspaper or separating one coffee filter from a stack, or buttoning my shirt. It has also resulted in spilling a cup of coffee on my lap and shattering the glass coffee mug.

fortunately, I have had little pain but there is the occasional shooting pain in my feet.

Dr. Flam suggested Vitamin  B Complex which I began taking. I searched the internet and found a company that claimed to have 90% success treating this condition with their fat soluble version of Vitamin B. I bought a so-called 3 month supply for $145. they suggested 4 capsules daily, but upping the dose if it did not work, so the final dose would be 12 capsules a day or $140 for one month supply. This has not been effective and as they offer a 3 month money back guarantee, I will try to get my money back, without much optimism. So, its back to the pharmacy for Vitamin B Complex. At least it is an inexpensive treatment which I don't think will work.

Oh well, better to live with peripheral neuropathy than die of Merkel Cell carcinoma.

Here is a link to a Mayo Clinic artticle about peripheral neuropathy.

Link to Mayo Clinic Article

I'm Back!

I am back from Montreal. It was a wonderful visit. There is much to talk about and I will do it in a future post.
Here is a photo of my mother, Isobel who weighs only 62 pounds but seems to otherwise be in good health. I am on her far left, Jon on her right, and Ellie and Robert standing.

Radiation Pneumonitis, No Evidence of Cancer!!!!!

Today I spoke with Dr. Nghiem. He told me that Merkel Cell Carcinoma looks like any other malignancy when it spreads to the lungs, round smooth nodules. It typically goes to the lungs only late in the disease when there is cancer which is widespread. He will look at the images on my last blog and have Dr, Parvathaneni look at them also and get back to me. I so much appreciate his responsiveness. 
I called Dr. Flam this morning and he agreed to see me on an urgent basis. I had labs done and my counts are improving. HGB is up to 12.3, WBC up to 5500. We did a baseline chest X-Ray and I must say that it looked almost normal. It amazes me how much more we see on a CT scan of the chest than on a routine X-Ray. We reviewed my PET/CT images. He examined me and I went for a walk while measuring my O2 Sat. This is a simple measurement with a device clipped to the finger which measures the percentage of oxygen in the blood compared to the maximum. It should run in the high 90's. It was 95% at rest and on walking, went up to 97%. These results indicate good function.
Dr. Flam has come to the conclusion that this is radiation pneumonitis, and the predominant area of involvement is the area which was irradiated. There are other areas involved also which he says is not uncommon. It is more common when chemotherapy is given at the same time as I had. The treatment if symptoms require it is with steroids. We would like to avoid steroids because of the immunosupressive effect which is not desirable with MCC.
He is fine with me sticking with my plans to go to Montreal and I will bring pills for a course of steroids with me in case they are needed. He suggested I delay my flu shot until I get back but wants me to wear a mask on the airplanes.
I have to thank Dr. Flam for seeing me in the middle of an exceedingly busy day. 
Bottom Line: No Evidence of Cancer. As good a result as I could hope for. Radiation Pneumonitis. A temporary inconvenience.
On to Montreal.

My PET/CT Results: Good News and News of Unknown Significance

This will be a long post.
I have been complaining of increasing shortness of breath lately. The symptom is not disabling but is disturbing. I have been thinking I might have lung metastases, and because of this, I have pushed up the timing of imaging to have my scans done yesterday. Before I get into the findings, I would like to fully describe the symptoms. I have little tolerance for exercise, getting short of breath with rapid walking. When I take a deep breath, it seems to catch and make me want to cough, I have difficulty modulating my voice and sometimes have to stop speaking to cough. I am not short of breath at rest.

Coronal CT Image

On this coronal image, there is air space consolidation adjacent to the heart, more right than left. There is also some focal peripheral consolidation.
(Right in patient is on viewers left)
Consolidation means fluid or other tissue where lung should be)

Here we can see that there is consolidation on both sides.

Axial CT Image

Here, we see a large abnormal area of air space consolidation to the left of the heart and several additional abnormal areas of lung consolidation on both sides.

This image shows some similar areas in the left upper lung.
These areas are described in the PET report as showing uptake of the tracer (the indicator of abnormal activity) which probably indicate infectious or inflammatory origin. The areas adjacent to the heart are described as also taking up the tracer, most compatible with post radiation inflammatory change.
There is no uptake in the area of the original mediastinal tumor, reported as a "Positive response to interim therapy".
Both the PET and CT reports attribute all this to inflammation and not neoplasm. My experience with almost all forms of cancer is that metastases are smooth round nodules in the lung without inflammatory changes around them.
However, I am not yet jumping for joy.
I have called Dr. Flam to discuss this and expect to hear from him tomorrow. I have also tried to reach Dr. Nghiem to get his take on this. Nobody I have talked to has ever seen what metastatic Merkel Cell Carcinoma looks like in the lung. We also need to find an explanation for the findings assuming they are not MCC.
In the meanwhile, I expect to go to Montreal as planned on Monday and deal with this when I get back.
To sum up, at first look, this seems like good news, but after many disappointments, I retain a guarded optimism.
I will leave Monday for Montreal, where I will see my 94 year old mother, perhaps for the last time. She has lost weight and recently weighed as little as 63 lbs. While there, I will have a chance to visit with my sister Ellie, her daughter Cheryl and grandson David (not named after me) from Edmonton, my brother Jon, visiting from Gainesville Florida and my brother Robert, his daughter Andrea, her husband Ben, and granddaughter Alex.
In addition, it will be my 45th medical class reunion and my 50th undergraduate reunion at McGill.
These can not be missed.
It seems like only yesterday, and yet also like an eternity ago when, on a visit to Montreal, I put my hand on a spot right in front of my ear and fount a mass. It was only 17 months ago. I have been through two major surgeries, 3 episodes of radiation treatments, 2 courses of chemotherapy, a port insertion, innumerable blood draws, and about half a dozen sophisticated imaging studies. These are all further documented in my earlier blog posts.
I continue to fight!