Images from my CT. The Dilemma of Treatment

The axial image is above, the coronal below.The coronal image shows the mass almost in the midline above the diaphragm. The axial image shows the mass in front of the spine. The little black dot beside the mass is air in my esophagus.The mass is behind the heart and liver in the axial scan. A large radiation treatment poses a risk to my heart and spinal cord.
This is the only evidence of tumor. However the consensus is that there are likely othe microscopic foci of tumor and this is apparently something seen with MCC.
So what are the options?
Surgery is ruled out by everyone. It would be a horrendous operation for me, and not likely to offer enough chance of prolonged benefit to make it worthwhile.
Radiation treatment alone is a possibility, likely to obliterate this mass and I would likely avoid serious long term side effects.
Radiation preceded by chemotherapy. This is Dr Flam's suggestion. The chemo might shrink the tumor so the field if radiation could be decreased. Also, without radiation at the same tome, the effect of the chemo could be assessed. Chemo could possibly delay or prevent new metastases.
Radiation followed by chemotherapy. Hit it first with the best shot, and use chemo to try to clean up microscopic distant disease.
The problem with chemotherapy is that it reduces the immune response to the tumor. Even killing 99% of the tumor cells won't prevent recurrence if the immune system is crippled.
Dr Nghiem proposes a new treatment which has shown promise in animals, but I don't know if it has been tried in humans. Instead of 30 radiation treatments over 6 weeks, one triple shot given once. It would injure many cells rather than kill them. The hope is that these injured cells release antigens that the immune system will recognize as "not self" and create antibodies to kill the tumor cells all over the body.
There is little to lose with this approach. If it fails, the other possibilities above are still available, and in the meantime I may have several months of good quality of life. If it succeeds, I will be a pioneer patient.

Bad News on my PET/CT

Today, I went for a follow-up PET/CT. I have been feeling great, almost asymptomatic except for some dryness in my mouth and reduced taste sensation. I was optimistic that the scan would be normal and I could have a happy Thanksgiving and head off to my Hawaii cruise in a good frame of mind.
No such luck. The scans showed a mass in the posterior mediastinum measuring up to 4.5 cm, almost two inches in diameter. It is located just above the diaphragm behind the heart, next to the esophagus and spine, near the aorta. There was nothing there on my previous scan in June. The rest of this examination shows no evidence of significant abnormality elsewhere.
I put in a call for Dr Nghiem this afternoon, but it is Thanksgiving. I have an appointment to see him on Tuesday.
So what next? Surgery would be very difficult and dangerous,  painful with a long and arduous recovery and no real expectation of success. Chemo is an option. Radiation is another option. The latter seems more likely to be successful. I await word from the specialists.
I will post more in the next few days.

Six Months After

It is now about six months since I discovered my cancer. It appeared suddenly as a nodule in front of my left ear. After surgery and radiation, I am alive and feel well.
However there are residual symptoms. Taste is not completely restored. My mouth remains dry. My teeth have become sensitive. My left ear is numb. I have lost weight, about 15 pounds since May 2010. I was overweight so it is not all bad.
I have appointments for a follow-up PET/CT just before Thanksgiving and will visit Dr Nghiem in Seattle on November 30. Until then, without much to report, I will not be posting.
I have made some plans for the future. Assuming the best, that no new lesions show up, I will cut my work week to three afternoons per week and go to the gym for aerobic workouts 6 days per week. We will cruise to Hawaii for two weeks in December. We likely will cruise to Mexico in February and I will visit my mother early in March. We are trying to organize a family cruise in June, but I am not optimistic about that. The last time I tried that, I ended up paying for a cruise nobody took.
I thank the San Francisco Giants for distracting me during the worst times. I still can't believe they went all the way.

Here is another photo, taken today, showing no change.

I see today that there are three new victims of Merkel Cell Carcinoma added to the Google support group. I wish you all the best. My advise is to be a strong advocate for your own care. Find a physician who deals with this disease all the time. Learn all you can about the disease, and remember that the research and study is rapidly advancing and what may seem hopeless today, may be easily treated tomorrow.

I am presented at Tumor board while in Philadelphia

We are back from Philadelphia. I finally met my grandson Eli. There is a slight culture clash here. It seems Eli is a Phillies fan and I root for the Giants.

Below is a photo of Eli, Sammie Mike and Leanna.

Here is a link to photos from Philadelphia.
http://picasaweb.google.com/radocshu/PhiladelphiaOct2010#


I was presented at Tumor board at St Agnes Medical Center in Fresno. I learned of this when my oncologist, Marshall Flam called me and asked if I wanted to attend. Of course, being out of town, I could not.
Dan Stobbe also called and offered to take notes. Here are extracts from those notes.

Not much new info from tumor board.  Main point I learned was from pathologist, that these tumors are C-KIT positive on staining; that raised question of whether any possible relapse might be treated effectively with Gleevec.  Nobody seemed to know of any literature re: that, might be good question to ask your doc at U. Wash. (I will ask. I see Dr Nghiem on Nov 30)

Concensus was that local treatment with RT (radiation) was the way to go.  Surgical resection alone higher relapse rate.

Unknown if spontaneous regression of primary (suggested by multiple negative skin biopsies) is a positive prognostic factor or neutral.  Another good question for U. Wash MD. (I asked Dr Nghiem this question and he had no useful information on this subject.)

All agreed that follow up/surveillance with phys exam and PET would be wise. (My follow-up PET/CT is to be done just before Thanksgiving)

All wondered/were curious if U. Wash will be drawing repeat circulating Merkel cell studies as surveillance. (I hope so)

Back home, Gary met us at the airport with Sara. She gave me such a loving greeting. She is a real sweetheart.

Go Giants! (posted while they are losing game 2)

My Visit to Montreal

This has been a very enjoyable visit. My mother is in good spirits. She also seems to be in excellent health.

I got a chance to spend time with my two brothers. Jon lives in Florida and is a Professor of Biostatistics at the University of Florida. Robert is a retired teacher and lives in Montreal. Thank God for that as he has the responsibility to be the first line of defense for my mother. He brings her won ton soup every Saturday, carefully proportioned out to last the week. Is it a coincidence that when I was at my worst with side effects of radiation, I was living on War Won Ton soup?  I think the apple does not fall far from the tree.

That's Jon on my right and Robert on my left.
We played bridge yesterday recalling many family bridge games when my father was alive.
It was very close but after 16 hands, my mother was the winner.

We went for dinner at Ty Breiz, with my niece, Andrea and her husband Ben. Also joining us was Sandy, Jon's wife. The onion soup was almost as good as I remembered it. I guess my taste buds are making a comeback. The mouth is still dry.
Everyone commented about how great I look. Is it because I don't look like I am dying or is it because of the weight loss. I think the latter. I recall a song by Gilda Radner who later died of ovarian cancer.The song was called Goodbye Saccharin  and it lamented the recall of the sweetener because it caused cancer at huge doses in rats.
"Men prefer girls with cancer to girls with flabby thighs" (perhaps not a perfectly accurate quote).
I am off to Philadelphia tomorrow and will post again after that visit.

Progress Report 5 Months After My Tumor is Discovered

There is not much new to talk about. I have lost more weight, down to 163 1/2 today. This is about 15 pounds since May. I still have little appetite and although my taste buds are returning, most foods have some taste, but not to my liking. Boost plus, chocolate tastes good. Most other foods are not intolerable but not good.
Here is my photo, 50 days following radiation.

 You can hardly tell which side was irradiated.
Here is my photo from the last week of treatment from my drivers license. Pardon the blurryness, as I used the camera on my laptop and it can't do close-ups.

I was a redneck.
We are on our way east on Wednesday. I go to Montreal to visit my mother and Judy goes to Philadelphia to visit our son, daughter-in-law and their two youngsters, including Eli, our first grandson.
I will join her in Philadelphia a week from Monday and we return the following Sunday.
My bridge results continue to be good, coming first in the last 4 club games played, with two different partners.
Go Giants. Can't you win ONE more game?
Here is a photo of me with Rocky, our Goldendoodle. He did not like sitting in the chair with me.

Next week, if technically possible, I will post from Montreal.

Five Weeks After

I completed radiation treatments 5 weeks and 1 day ago. Today I visited Dr Holmes, my Internist. My total cholesterol and blood sugar are down (good news), but my HDL is down 10 points and is way too low. This is because I have not gotten much exercise lately and have been getting niacin flushes due to having to take niacin without much food, as I have not much appetite.
I also had an appointment with Dr John, my radiation oncologist. My skin has healed, and the ulcer I saw on my tonsil has also healed. I feel like I am doing about as well as could be expected. My taste buds are slowly reviving. I invented a device to clean my tongue while in the shower last night. A toothbrush is too tall and makes me gag. Something flat and wide would work better. Before I tried to patent this, I found numerous devices already available, and have tried one and found it works better than a toothbrush.
Two weeks from today, I leave for Montreal and Philadelphia. I hope I can taste the Montreal bagels and the onion soup from Ty Breiz. The other day I did a test run on onion soup at Mimi's. It was not very tasty, but I still had seconds.
I have been spending a lot of time watching the Giants on TV, with the help of TIVO. I can thank them for helping me pass the time in the past two months. Go Giants. Still in first place as I write this. 

Here I am. My neck looks like I never had the radiation. I have lost weight and today I am wearing size 34 jeans, and they fit. I will try not to gain it all back.

I like to include a photo of somebody better looking than me. This is Bel, Gary and Dana's youngest daughter. As you can see, she loves to eat.