Update Two weeks after Radiation

Very little is new. My skin is healing well. My taste buds show very early signs of improvement. I had a follow-up appointment with Dr Flam who recommended Zinc, 50 mg twice daily and brushing my tongue which is coated.
Dr Nghiem has suggested a follow-up imaging study which I will have at the end of November, and I am in the process of setting up a follow-up visit around December 1.
In the meantime, I will go to Montreal from about October 6-11, and then to Philadelphia Oct 11-17. Judy will go straight to Philadelphia October 6. At the end of October, we will meet friends from Montreal in Las Vegas.
We also have a Hawaii cruise from  December 8-22. I hope the imaging results do not put a damper on that.
My weight has fallen to 166 lbs from about 176 when I first found my tumor mass. This weight loss is not unwelcome.
Here are the most recent photos. I did get a haircut.

Below is a photo of our dog, Rocky and our granddaughters Eva and Sara

Taste Recovery

Here are some references to studies on the subject.
http://www.ncbi.nlm.nih.gov/pubmed/16798859
http://cat.inist.fr/?aModele=afficheN&cpsidt=3600133
http://www.thegreenjournal.com/article/S0167-8140(02)00025-7/abstract
http://www.ncbi.nlm.nih.gov/pubmed/16887272

These articles suggest that much of the sense of taste is recovered in six months after the end of treatment. One article showed recovery in all subjects in six months. The consensus is that the loss of taste is not due to salivary gland dysfunction but due to damage to the taste buds. Some patients never recover their sense of taste completely

One Week After the End of Radiation Treatment

August 24, 2010

I had a brief appointment with Dr John this morning to check out my skin. As you can see from the photo, there is an area of depigmentation on my neck but my cheek looks fine. Not visible in  tne photo is some skin breakdown behind my ear which I continue to treat 3 times daily with dilute hydrogen peroxide followed with Silvadine cream. Dr John says it is improving. I am feeling good. My throat is still sore but improved. No change in my taste buds.

I asked if there are any studies on neck radiation patients giving statistics about the time: dose: location: relationship to taste recovery. I could not find anything but anecdotal information on the internet. You would think some grad student would follow a large group of patients through the recovery period with either tests of taste or subjective quizzes to be able to construct graphs of the timeline to taste recovery. As it is, Dr John suggests that with my dose and using Intensity Modulated Radiation, I should expect substantial recovery in the next two months. He also says I should have no problems traveling in October so I will begin to make plans to go to Philadelphia and Montreal in mid October.

Our house is on the market. We have had two open houses and three visits by realtors with prospective buyers. We are asking $200,000 less than when we put it on the market 3 years ago, but no hint of an offer yet.

I will continue working 3 half days in August and then go to about 2 1/2 days per week in September.

Bert and I scored 212 on a 156 average to win Monday’s bridge game. However our winning streak did end on Sunday, finally not finishing in the overalls.

I know that at one time Judy asked people not to call, as I was having a hard time reviewing all my history with friends and family, but I have adjusted well to my condition and my prognosis and am happy to speak to anyone who wishes to call.

I have found a back-up Doctor in case the kissing doctor is unavailable.

Here is Dr Sammie, my granddaughter in Philadelphia.

I Know What Michael Douglas Has Coming

Tuesday, August 17,2010

I am done with the radiation treatments!!!

I had my last treatment this morning. They gave me a certificate of completion like I had taken a Medical Education Course. Actually, I should get category 1 credit for all this as I learned so much.

I know what Michael Douglas has to look forward to, as he will have radiation for throat cancer. His will be worse than mine. I hope his trophy wife will be half as nice to him as Judy has been to me.

The printed information given to me says that after treatment ends, symptoms may still get worse for 7-10 days before there is any improvement. The electron beam treatments seem to be innocuous. The entire process takes only a few minutes. I lie on the same table with the same head holder, but no mask. They line up the machine with marks on my face which were drawn a week ago Monday by Dr John, and which have almost completely come off. They tape a stand-off pad to my cheek, generally running the tape onto my lips so I feel like a hostage. About 15 seconds of machine noise and I am done.

Dr John checked my skin yesterday, and there is an area behind my left earlobe which has broken down. I am to cleanse it with Hydrogen Peroxide diluted to 20% and then with water, and then cover the area with Silvadine cream, three times daily. This will take weeks to heal, but is relatively asymptomatic as my earlobe is still numb from my surgery. The skin in front of my neck and just above the left clavicle is worse than it was, and the Aloe Vera stings when I apply it. I am afraid it will begin to break down.

My other symptoms are unchanged and I won’t bore you with the details.

At the bridge club yesterday, Judy surprised me by arriving with a birthday cake for my 70^th which is on Wednesday. It was a lemon cake, one of my favorites. Needless to say, I tried some but it was tasteless to me although everyone else really enjoyed it.

Playing with Bert who seems to have recovered nicely from his hospitalization, everyone must have felt it necessary to give me birthday gifts at the bridge table and we had a 72% game, one of the best in recent memory. For those who are unfamiliar with duplicate bridge, it means we had better results than others with the same cards 72% of the time on average. Usually, a score of around 62% will be a winner.

On Saturday, Judy’s birthday, she arranged her own party with Gary, Dana, Eva, Sara and Bel. Our sons presented us with a gift of two nights at the Martine Inn, a B&B in the Monterey area. We will likely go in late September. After cake and dessert, Eva announced that she had eaten a dozen strawberries. Not very smart to finish them all. Sara began to melt down, but I rescued Eva from parental anger and Sara from sisterly jealous anger by taking off to the store to buy more.

Last night, I took Judy to the salad bar, (Sweet Tomatoes), I ate without enjoyment, but it was the first time in a while that we ate out together, and that was good for both of us.

I plan to work three afternoons this week and likely will continue to work part time until I see some improvement in my taste buds, after which I want to visit Philadelphia to see Sammi and Eli, and Momtreal to see my mother, Seattle to see Dr Nghiem and perhaps some time in Vegas or a cruise or both.

On a final, and somewhat sad note, Eva was asked to submit some meaningful photos as part of her first homework assignment.

She submitted the photo below, taken when she was a baby, more than nine years ago.

In the top row are Judy, Eva and me

On the bottom row are Eva's maternal grandmother Mary, her great grandmother Esther (GG), Judy's mother, and my parents, Eva's great-grandparents, Isobel and Samuel Shuster. Of the four on the bottom row, only my mother survives.

Hooray. I passed!!!

I passed the written drivers test. The photo will be weird with half my face red. I will put it down to bad lighting. Actually, if you have an appointment, the CA DMV is very efficient. I was in and out within half an hour.
Only two more treatments to go.
Bert is much better, home from the hospital. We will play bridge this afternoon.
Mike and Leanna sent us birthday gifts which we opened while doing a Skype video chat. That was a great way to keep close when travel is impossible. My gift was two wooden pieces onto which Mike printed some old photos. Judy's gift was coasters hand painted by Sammi, age 2 1/2. Great and meaningful gifts.
Our house is on the market. What a pain in the you-know-what. On Wednesday we had to vacate the place as a couple with two boys checked it out for an hour. Then our realtor says they can't afford the asking price. How inconsiderate. We were only given an hour,s notice to clean up and get out.I am having great fun following the Giants. They are a good distraction.
We recorded the HBO special, The Pacific. I have been watching that. If you are one of those who feel that we should never have dropped the bomb on Hiroshima, watch that series. It will change your mind. War is horrific. You can't imagine the courage it took for the marines to go from island to island in the Pacific to battle the Japanese. If anything, the error was to go to islands like Guadalcanal and Iwo Jima, rather than wait until we could use the bomb.
I will report on my progress again next Tuesday after my last treatment.

What Do I Tell My Granddaughters?

Tuesday, August 10, 2010.

SARA, age 3, The Kissing Doctor

What do I tell my granddaughter?  She has been most interested in all of my injuries.  When I had a healing biopsy site in my right leg, she noticed it and ask me what it was.  I told her that it was a cut and it would get better.  Then she insisted on kissing it.  Similarly, a biopsy on my left cheek was cured.  We have named her Sara, the kissing doctor.  I don't know if she is any less effective than the other physicians that I have.  I have a mark on my chest, which I plan to remove after I photograph myself today.  This was a localizing  marker for the radiation treatments.  She asked me what that was not told her that it was like a tattoo that she sticks on her skin.

As you can see from my photographs, I have green marks on my cheek covered with tape outlining the location of the electron beam treatments.  In addition, my skin is quite red, and there is one area behind my ear which has broken down.  I don't know how I am going to explain that to her.

I also don't know what to tell my nine-year-old granddaughter.  She has already lost her grandmother on her mother's side to a combination of breast malignancy and lymphoma.  In addition, one of her favorite uncles was hit by a car and killed.  We have told her that I have a condition that needs treatment.  I don't know if I have to be more specific than that.

I have now completed the full five-week course of intensity modulated radiation treatment.  Dr. John took upon himself to treat my left tonsil, although Dr. P. had not recommended it.  I don't know whether to be grateful for this or unhappy with it.  It seems that this has been the reason that I've had so much discomfort in my throat on the left.  The PET scan showed some increased uptake in the left tonsil, but it was felt to be a normal variant.

I now have the following complaints:

1.  Sore throat on the left.

2.  Worse than a complete loss of taste sensation, everything tastes bad.

3.  Dry mouth.

4.  Itchy and somewhat painful skin in my left neck, redness and increase in pigmentation.

5.  There is some breakdown of the skin behind my left ear for which a silver sulfonamide cream has been prescribed.

On the plus side, my mental status is stable, I do not have significant hoarseness, and I have not suffered from the debilitating fatigue that other radiation oncology patients complain of.

I plan to work this afternoon, and Wednesday afternoon, but not on Thursday, the day on which I have to take the written test to renew my California drivers license.  I think I should not have trouble passing the test.  My bridge game still has not deteriorated.  Playing with a different partner as my usual partner is in the hospital with respiratory failure, we still manage to take first place in a 12 table game, where there was an overall winner.

I have to take this opportunity to wish Bert Rettner  a speedy recovery.  He is not only my bridge partner, but a very good friend.  Unfortunately, although he is a physician, he has been unable to kick the cigarette habit, and as a result, he now suffers from severe emphysema and bronchiectasis.

Last night, in the middle of the night, I was awoken by  a strange noise.  It turned out that our pool sweep had become detached from the hose, and water was spraying all over the place.  I had to go out in the middle of the night to turn off the pool pump and filter.  After that, I had great difficulty in sleeping.  When I finally fell asleep, I had a dream that I was using ultrasound to look for recurrent malignancy in my neck.  I took the opportunity to put the ultrasound transducer on my abdomen and found a huge mass in my liver.  I hope this is not predictive of the future.

Tomorrow, I begin the first of five electron beam treatments.  I anticipate that this will not have very much affect on any of my symptoms with the exception of skin symptoms, which should get significantly worse.  I am hoping that other symptoms will begin to improve over the next few weeks.

In spite of my nightmare last night, I remain very optimistic about my outcome.

Update after 20 of 30 radiation treatments

Tuesday, August 3, 2010.

Today, I have completed 20 of 25 of the intensity modulated radiation treatments.  This will be followed by five electron beam treatments.

Before I get into a discussion of my recent visits to the radiation oncologists, I would like to discuss some of the activities which went on this weekend.

Brian, my middle son, who lives in Vancouver, came to visit.  We had a very nice visit with him.  On Saturday, we went to visit with Gary and Dana, where we had another small party in honor of Bel's first birthday.  Dana's parents were there.  They visited from Valencia, California.  Eva and Sara were there, of course,  and Gary's first wife, Margaret Eva,s mother was also was there.  We had a nice time and again, cake was served.  Unfortunately, I could not enjoy the cake.

On Sunday, we did video chats, first with Mike and Leanna, Sammie and Eli.  Brian was also able to participate.  This was followed by a video chat with my mother in Montreal.  My sister Ellie was there visiting from Edmonton Alberta.  Her daughter Cheryl was there with her newborn baby, whose name is David.  He is not named after me.  This was my first chance to see him.  I have to say that the innovations in modern electronics are wonderful for families were separated by so much distance.  Here, we were able to share video and chat with people living in Philadelphia, Vancouver, Montréal, and Edmonton.  I can only imagine what my grandparents on my fathers side who left their families behind in Russia, and moved to the New World, would think.  How they would have loved to have been able to communicate like this!

I have sufferred from most of the expected symptoms of radiation treatment.  The one which I have managed to avoid is the fatigue described by many.

The most distressing of all the symptoms is the loss of sense of taste.  In fact, it is worse than merely the loss of sense of taste.  Everything tastes bad.  The way described it to my wife is for her to imagine that everything she ate tasted like cantaloupe.  She hates cantaloupe.

The next distressing symptom is a very dry mouth.  In spite of multiple rinses, drinking lots of water, the dryness continues.  This also seems to result in a sore throat, although my throat has markedly improved since the first week of radiation treatment.

A new symptom which I have developed is some kind of painful lesion in my nose on the right.  Dr. Lee, the radiation oncologist, who was filling in for Dr. John yesterday, thinks it might be a viral herpes simplex.  I have had occasional herpes simplex infections on my lip, and I have had a similar condition and my nose two or three times in the past 10 years.  I will try treating this with an antiviral ointment.

My back pain is resolved almost completely.

Last, but far from least, is the burning in my skin of my neck on the left.  I have been applying aloe vera lotion to this four or five times a day, but I anticipate this getting a lot worse.  This is particularly so as I will receive five electron beam treatments.  These treatments are designed to add radiation to the skin. I asked Dr. Lee what were the chances that my skin would break down and that I would require skin grafts.  He said that it was likely that my skin would break down, but that it was virtually certain to heal on its own.  However, because this is the original site of tumor, the intense radiation to the skin is required.

On Saturday, I had a long talk with a fellow sufferer of Merkel's carcinoma in Minnesota.  His name is Rich Kessler. He tells me that he is one of the founders of the group.  He still has a non-healing lesion on his leg in the skin as a result of his radiation treatment four years ago.  However I have to say that my discussion with him gave my spirits a big boost.  He has survived eight years with Merkel's.  Rich, this message is for you.  I read on one of the other posts on the Merkel site that you can send blood for testing to Dr. Nghiem's lab.

My bridge game still has not suffered.  Playing with Bert, in a game with 15 tables, we had the best score of all 30 pairs with 212 on a 156 average. 

Here are the pictures. You can see the left side of my face is red and pigmented. My beard on the left is barely growing. The left facial droop appears more pronounced to me.

 Unless there is some unexpected event, I will post in one week when I have completed the Intensity modulated treatments.


One additional note. My radiation badge at work is changed every month. Mine was changed today. How ironic! Here I am taking this huge dose of radiation and I wear a radiation badge at work monitoring me for trivial doses by comparison.
I have spent my entire career conscious of the hazards of radiation, and avoiding it to the best of my ability and now I willingly accept huge doses. 


Here is a link to information about circulating tumor cell science. It is slow to load and references breast cancer, but I assume it will also apply to Merkel's. My result was zero circulating tumor cells.
http://www.veridex.com/media/CellsearchMOA.aspx