Wednesday, July 28, 2010

Update at Halftime

Wednesday, July 27, 2010.

I am at the halfway point in my radiation treatments. My symptoms as previously listed  are about the same. My back pain is manageable and my throat pain is minimal. Constipation is gone. The most troubling symptom is complete loss of the sense of taste. Mike and Leanna have suggested I try Miracle Fruit. This is a fruit which contains a chemical which alters the taste of foods to make them taste sweet. It acts on the taste buds. I have ordered this from Amazon in pill form, and will report on its effect on me.
There were reports on CNN which looks encouraging. Here are the URL
The research is being done at Mount Sinai in Miami, and a Dr Mike Cusnir was interviewed about it on CNN. I decided to call to discuss this. I had to call three numbers, all of which were answered by a very helpful HUMAN, and not by a machine. I did not get to speak with the doctor but I did speak with Monika Brooks, a nurse involved with the research. She reports good results in many chemotherapy patients in restoring some sense of taste, but not all patients. They have limited experience with radiation treatment patients.

Thursday July 28,2010

Here are the photos from the halfway point.

I can see a definite left facial droop. Otherwise there is little evidence that I have received radiation.
My back has improved. My neck feels warm on the left. All food has no taste. There is a constant bad taste in my mouth. Others describe it as metallic. I have been advised to use plastic utensils. This doesn’t help.

Sunday, July 25, 2010

Bel Turns One

Sunday, July 25,2010.

Friday was Bel's first birthday. We went to visit and have pizza and cake, She is on the verge of walking. We had a nice visit. here is a photo of her with cake face.
I have now completed 13 treatments. I can report the following symptoms.
Loss of taste. This perhaps is the most troubling. I can’t taste anything. I have no desire to eat as a result. I can taste no saltyness and no sweetness. I will have to force myself to eat to avoid a feeding tube.
Dry mouth. I keep using the mixture of salt and baling soda to wet my mouth, but it does little good. At least it does not taste as terrible as it did.
Sore throat. This has improved since last weekend, and it seems the medication has worked.
Itchy skin, with some sensation of burning in my left neck.
Constipation. This may be from the narcotic in the slurry given to me for treatment of sore throat. I stopped taking it yesterday.
I have developed a quite severe low back pain. This has occurred in the past, but it is one of the worst I have had. When it started, my first thought was “could this be due to bone metastasis?”
I don’t think so. I have taken NSAIDS today and I’ll see what develops.
My bridge game is back to normal. Bert and I came first of 9 tables on Friday.

Radiation Treatment Continues

Here I am after 5 radiation treatments. The spot on my cheek is the biopsy site. I have the report of “Inflamed Suborrheic Keratosis”. No Merkels. Of interest is that the report does not show the name of the reading pathologist.
I think I have a slight facial droop on the left as a result of my surgery.

Sunday, July 18, 2010.

This has not been a good weekend for me. I have begun to develop the symptoms of radiation treatment. Nothing unexpected has happened, with the exception that I think is happening sooner than I expected. I began to have a very sore throat, and some discomfort with swallowing. I have lost much of my sense of taste. This is the case after only 8 treatments, and have 22 treatments to go. I dread the next few weeks. As yet, have not taken any painkillers. Tomorrow I will discuss the situation with Dr. John. So far, I have noticed no skin changes.  My beard is still growing on the left side. There's no redness or skin discoloration. I've had no itching or other symptoms. I have noticed some hoarseness.
Reading of peoples experiences online, I fear now that when my symptoms become worse, I may require a gastrostomy. I also fear that my sense of taste will never return.
I hope that this will all be worthwhile. It would be terrible to go through all of this only to have the cancer return.
On a happy note, I got to spend a lot of time with Gary, Dana, Sara and Bel. Sara has been particularly delightful. She came over to me and kissed the location on my right leg which still shows some discoloration after a skin biopsy. We joked with her about her becoming the kissing doctor. In many ways, the kissing is better treatment than anything else.
I spoke to my mother today. She is doing well. Ellie (my sister) visited her and just left today.While she was there,she was able to do a video chat with Mike and Leanna and had an opportunity to see Sammi and Eli.
Tomorrow, the plan is that radiation treatment in the morning, and play bridge in the afternoon. I still plan to work in the afternoons next week.

Wednesday, July 21, 2010.

On Monday, I was examined by Dr. John. He thinks that I might have oral candidiasis (thrush). This is a yeast infection.  when he looked in my mouth, he saw some white patches in the area where I was uncomfortable. He has given me a prescription for oral Nystatin.In addition, he gives me a prescription for a mixture which requires compounding.  It includes sorbitol, lidocaine, hydrocodone, and acetaminophen.  in order to receive these, I had to go to a pharmacy which does compounding.
I go to the bridge club.  When I'm done, I have a message on my cell phone from the pharmacy is saying that.  They would  like my permission to proceed with preparing this for me, in case the insurance doesn't pay. I go to the pharmacy, and the insurance does not pay.  This is quite ridiculous, but it turns out that I have to obtain a retroactive formulary exception.  Dr. John's staff is very helpful and this was taken care of yesterday.

The medications are actually helpful, and my pain has diminished.  However I'm still very uncomfortable with throat pain, dry mouth, difficulty in swallowing, and loss of sensation of taste.

I have now completed 11 of 30 radiation treatments.  I am not looking forward to the next four weeks.  For now, I feel that I'm still able to work, and will continue to work three afternoons a week.  I will still play bridge on Monday afternoon and Friday afternoon.  Last Monday, I feel that my bridge game was not up to par.

First Week of Radiation Treatment, Eli is born.

Friday, July 9, 2010.

My third radiation treatment was this morning. Yesterday in the afternoon, I felt some nausea. Otherwise I feel good and have no signs of radiation in my neck. I arrived at the office on time but had to wait about a half hour before treatment began. I met two interesting men in the waiting room. One was being treated for a brain tumor with radiation and chemotherapy at the same time. He was optimistic because half way into his treatment the tumor was slightly smaller. He had a history of thirty years of survival after testicular cancer and lung metastases.
The second man was being treated in his left neck for skin cancer, I presume squamous cancer and had a very red neck with a white patch about three inches in diameter, which was a skin graft. He also had some neck deformity and a facial droop on his left side.
He must have had a radical neck dissection and probably facial nerve removal as he said the tumor infiltrated nerves.
Both of these men seemed to be in very good spirits considering their conditions.
It makes me feel things could be much worse for me.

Tuesday, June 13, 2010.

Yesterday, at about 2 AM, we received a phone call. Our first grandson was born by cesarean section in Philadelphia. He weighed 6 pounds, 7 ounces and was 19 inches in length. Unfortunately, he was positioned with the occiput posterior, sunny side up. After two hours of pushing, they decided to perform a cesarean section. Everyone is doing well. We were supposed to be traveling to Philadelphia both to greet the new baby and help out, but this will not be possible. Fortunately, Leanna's parents arrived in Philadelphia just before the baby was born.
It appears that radiation treatment has not yet affected my bridge playing. On Friday afternoon, Bert and I came first, on Sunday afternoon, we also came first and on Monday afternoon, we came first of 12 tables and had the best score of all 24 pairs. Of interest is that Judy and Carol came second of East-West pairs.
On Friday, Bert Rettner, my bridge partner and friend took me for an early lunch. He is a physician who is now retired. However he has a particular interest in alternative medicine. He gave me names of reference books one of which I took from the library. The book is called "Younger Next Year"by Chris Crowley and Dr. Harry Lodge.  It basically gives you hints on diet and exercise to maintain your youth. I don't know if I can follow the advice at this time, but it is about time that I began a program of exercise which is more vigorous than merely walking the dog once or twice a day.
On Monday, following my radiation treatment, they have what they call a stat session. This is the time when the radiation oncologist evaluates how I'm doing. So far, and had no symptoms. We had a brief meeting with the dietitian. I will have to apply Aloe Vera lotion to my face several times a day.
I asked Dr. John about tips for improving my immune system. He recommended meditation. I don't know if I can do that, but today, while I was having my radiation treatment, I attempted to concentrate all of my thoughts on appreciating my heartbeat.

I have begun an e-mail correspondence with a former associate of mine. His name is Andy Osborne. He is much younger than me, and a world-class cyclist. He developed the mass in his neck which was diagnosed as carcinoma of the tonsil. He also underwent radiation treatment and I think chemotherapy as well. He has been doing very well and has resumed cycling and won races after recovering. He has given me three pieces of advice.
Be aggressive! Don't think for a minute that you cannot beat this.
Accept help when people offer.
Keep a positive outlook.
He said that he researched everything he could find on this cancer on the Internet and came up with 30 ongoing experimental protocols. He told his doctor that he wanted to be involved with all of them. He found a protocol which offered a 15 to 20% survival advantage but was experimental. He paid for it himself as it was not covered by insurance. One year later, it became standard treatment.
I think, that without asking, I have been following Andy's advice.

Tonight, I am hosting my regular monthly poker group.

I Begin radiation Treatment

Thursday, July 8, 2010.
Yesterday was a very busy day. I had received a call to switch my first radiation treatment to one clock on July 7, 2010. I had planned to work the afternoon at Kaiser. I had a dentist appointment for a complete set of x-rays to rule out cavities prior to beginning radiation treatment.
I had noticed a skin lesion which look like a wart just at the edge of the inferior margin of my right orbit. It had turned red and was noticeably larger than it had been previously. This was very disconcerting as I was beginning treatment to the left side of my face and neck. The entire treatment plan would be incorrect if this turned out to be the primary Merkel cell carcinoma. I decided to start work early. I called my dermatologist. He was on vacation, but I set up appointment with his associate, Dr Simjee, who agreed to see me in the morning. I left Kaiser after working only about one hour. I was seen by the doctor who assured me that she was 99.9% certain that this was not Merkel cell carcinoma. She did remove the lesion superficially and sent it for her pathological examination.
I went from there to the dentist who reported that my x-rays did not show any evidence of cavities.
After lunch, Judy and I went to see Dr. John, to consult prior to beginning radiation treatment. The radiation plan is for five weeks of intensity modulated radiation to deliver a dose of approximately 51Sv which corresponds to 5100 rem or rads using the older units which I am more familiar with. This will be delivered over five weeks, and followed by one week of electron beam therapy to the specific area where the tumor was first discovered. Of interest is that the dose to my right sided salivary glands will be about 20% of the dose to the left. I presume this is because of scattered radiation. After five treatments, I should be able to judge the net effect of the radiation on my right salivary glands by the results of the treatments on the left salivary glands.
 On Monday, we will have a chance to speak to the dietitian. 
I have my first radiation treatment. Thy inclose me in a mesh mask which conforms to my face and keeps me from moving. There is only minor discomfort.
After the treatment, I returned to Kaiser and work another 2 1/2 hours.
After work, Dana, my daughter-in-law (Gary's wife)  comes for dinner with Sarah, age 3 and Bel, almost one, This is a wonderful distraction. I barbecue steaks, thinking that while my taste buds are still functioning, I might as well enjoy a good steak.
 Sarah has become something of a comedienne. She said that she will not participate in her day camp activities but was only going to stand around. She repeated that several times, and then with a big grin on her face she said "I was just kidding". She is learning to swim and Bel is also learning to swim. However allowing them to go in the pool is a big production. They have a wonderful time just using the wading pool. Just as were about to go inside, Rocky (our Goldendoodle) punctuates the evening by peeing in the pool. 
I sleep much better, having been reassured that the treatment plan is on track.

I go for my Thursday morning radiation treatment. It is very quick and easy. I keep thinking as the radiation beam is traversing my body "take that you Merkel cells, I'm going to kill you. I'm going to get rid of every last one of you. You are my enemy and I hate you" .

On Friday, July 2, I received notice that my drivers license is up for renewal. It will expire on my birthday, August 18, 2010. I'll have to take a written test. I checked with the DMV website, and the earliest possible appointment is August 12. This means that I would have to take the test after five weeks of radiation treatment and my drivers license photo will show my face probably bright red from the radiation. One of the three DMV offices in Fresno has been closed for about a month. I decide to see if I can take the test without an appointment. I drive to the DMV office in Clovis and get there about 830 in the morning. There were 75 to 100 people waiting in line outside the door. The parking lot was filled with cars and people searching for spots. Parking on the adjoining streets was also nonexistent, filled with additional vehicles along to people going to the DMV office. As I did not want to spend all day at the DMV, I decided to use my appointment. I asked Dr. John if I would be in mental condition to take the test and he said I would. If you have an appointment, you usually only have to wait a few minutes. I would hate to lose my drivers license. 
I asked Dr. John when I could travel. He suggests waiting three weeks after radiation treatment. I will make an appointment to go back to Seattle to see Dr. Nghiem at the end of September. Judy wants to plan a cruise.

This Merkel tumor has forced us to cancel a trip to Philadelphia to visit our son and daughter-in-law and their new baby who is expected to be born in about a week. He will be our first grandson. I would like to travel to Philadelphia perhaps in the beginning of October to meet and greet him. They plan to name him Eli. 
Our oldest granddaughter, Eva, has written the following while at camp.
I think she will be a wonderful writer someday.

"Friendship is the sprout of a new life.
 When you make a friend, you have a person who will be by your side, and love you no matter what.
 Your friend will always walk home with you.
 They will hug you when you cry.
 Without friends, there would be no peace.  The world would  not spin round.
We need friends.

Eva Shuster-Arechiga Age 9

Saturday, July 24, 2010

Baseline Photos Before Radiation Treatment

I plan to add photographs to this blog. They will be taken using my isight camera on my Macbook Pro.They will allow tracking of changes during radiation treatment

Here are the first, the baseline prior to beginning radiation therapy.

Pre Radiation

Wednesday, June 30, 2010.

I have a dentist appointment at nine o'clock this morning. I'm nervous about this. If cavities are found, it is possible that I will need extractions prior to radiation treatment and in addition, it may change the treatment plan and delay the treatment. Fortunately, nothing is found. However I will have to return for additional x-rays of my mouth on July 7 at 11 AM.

At 11 AM, I have an appointment for follow-up with Dr. Flam. They do lab work which shows no abnormality. After about an hour and 20 minutes of waiting time, I finally get to see Dr. Flam. He has read the journal articles which I gave him. However he does not know very much about the virus associated with Merkel's. He gives me his e-mail address and later on in the day, I e-mail him some references. I have an appointment to see him again in about two months.

Gary has been doing some interesting research on the association of Merkel's and the polyamovirus. I will post his information later.

I am still feeling fine apart from some discomfort in the region of my incision, and some numbness in the region of my left ear. I'm in good spirits. I plan to work tomorrow all day, half the day Friday and then play bridge in the afternoon, and then work three afternoons a week during the early part of my radiation therapy unless I become too fatigued.

Monday. July 5 2010.

I have a piece of good news from Dr Nghiem. One of the blood tests done was a very sensitive assay for circulating Merkel cells. There were no such cells found in 7 cc of blood. They don't know what this means as there is little experience with this test long term but it is the best possible result. I am interpreting it to mean that my immune system is eliminating circulating merkel cells and this is a good prognostic indicator.

Radiation Planning

Monday, June 28, 2010.

Today was a set up appointment for my radiation therapy. Everything was done very efficiently. I was placed on a simulator table which is actually a CT scanner and some images obtained. They use a mask which goes over your head which is not unlike fencers mask. It is warmed up and softened and then placed over your head, pressed into position, and then cooled so that it retains its shape. This allows them to keep you in the proper position during radiation treatments.
Treatments will start on Thursday, July 8 and continue for six weeks, ending, ironically, on my birthday, August 18, 2010. I will celebrate my 70th birthday by ending radiation treatment. We reviewed all the complications which are possible and the precautions to take. The most annoying probably will be the need to gargle and rinse my mouth about five times a day with a mixture of salt and baking soda and water.
Treatments will only take about 15 minutes and I should be in and out within half an hour. Every Monday, there is what they call a stat session which will involve reviewing my progress with the radiation oncologist. On the first Monday after treatment begins, we will also meet with the dietitian. Dietary restrictions expected will be as follows. I'll not be allowed to have anything which is too acidic, nor foods which are crunchy and which might tear the mucosa of the mouth. I will not be allowed to have hot coffee or anything too cold. I'll have to restrict processed sugars because of the risk of dental caries.

I'm still feeling cautiously optimistic, but I have to say that reading the case histories on the Merkel website is quite terrifying. Right now I am essentially asymptomatic, except for some discomfort at the surgical site. However I am aware that this is a potentially devastating malignancy which could rapidly appear in the liver, brain, bone amongst other sites. I hope that I am not spoiling my last good months by taking the radiation treatments. However I have no choice but to follow with my physicians recommendations as they are the top experts in the field.
Some interesting literature has come to light linking the virus which is involved with Merkel cell carcinoma and the Salk vaccine which was used to immunize me against polio. Apparently many early batches of this vaccine were contaminated with the polyamovirus. Who could have known?
I plan to spend some my time in the future writing a separate blog which will basically be my memoirs. In the meantime, I feel that I am coping very well with my current circumstances.

My Visit with Dr Nghiem

Sunday, June 20 2010.

We are back in Fresno from our cruise. I must admit that it was not entirely successful in distracting me from thinking about my condition. I think the tumor is already growing at the surgical site, only 2 1/2 weeks since it was removed.

I am busy getting material together for Seattle.

Tomorrow, I will visit Dr Teitelbaum and Dr Tashjian to get copies of my records. I will also visit Dr Flam and have a 2 hour appointment with Dr. Mahdu John, who will be my radiation oncologist in Fresno. I will try to find out about the off label use of Beta Interferon and whether my insurance will cover it.

I have a dentist appointment for a tooth cleaning and to get a prescription toothpaste to preserve my teeth during the radiation.

Tuesday June 22, 2010.

Yesterday was spent getting ready for the trip to Seattle. I have everything needed but quite disorganized. I will try to get it organized today.

Radiation will be no fun. It is likely to last 7 weeks. They make a mask which looks like a Fencer’s mask to hold you still. I hope it does not make me claustrophobic.

The most likely problems are skin burn, dry mouth from loss of parotid and submandibular gland function, loss of sense of taste, difficulty swallowing and hoarseness. The issue of damage to the mandible is reduced by their modern devices. There is also general malaise, fatigue and loss of appetite.

I have arranged with Kaiser to work when I can.

Treatment planning takes a week so I will not start treatment until July 6, exactly two months from the date I discovered the initial mass.

Friday, June 25, 2010.

We flew to Seattle on Tuesday evening and arrived at our lodging just before midnight. We stayed at a place called SCCA house. This is a residence which has been developed for cancer patients and many of the residents stayed for a fair length of time during treatment. The setup was very nice. Although rather Spartan, we had a nice room with queen bed, a separate area for a caregiver if needed, microwave, smaller for greater, flatscreen TV dishes so that we could prepare food if needed. The cost was very reasonable at $79 per night without any hotel tax being charged.

Wednesday was a very busy day. First appointment was with Dr. Nghiem. I was first examined by a visiting physician from Japan. Then Dr. Nghiem came in. He gave me a complete examination. We had a long discussion about the options. He felt that there was no recurrence of tumor mass in the region of recent resection. Because of this, he felt that it would be inappropriate to start injections in the area where the tumor had been removed. We had a frank discussion about what my chances are with Judy present. Basically, radiation treatment is expected to control local disease at least 80% of cases. However there is a 50-50 chance of having distant disease. At that time, chemotherapy may be an option for palliation. Injection of beta interferon may be an option if a mass appears, but this treatment is too untested to inject this material at the original tumor section site.

We then went for our appointment with Dr. Parvathaneni. We take a shuttle to the University Hospital which is about two or 3 miles away. We first met with a resident named dr Ralph Ermoian who is from Fresno. He examined me. We had long discussions about radiation treatment. Then Dr. P. arrived and he gave me a thorough examination including palpation of my tonsils causing me to gag. He felt that my tonsils were not involved. He is going to have discussions with Dr. John to organize my radiation treatments in Fresno. It looks like he will recommend only six weeks of radiation treatment.

Following this, we returned to the lab at Dr. Nghiem's location where they draw nine tubes of blood. We then returned to SCCA house, picking up bagels on the way back to have a late lunch. I checked my e-mail and discover that they want me to return for one more blood sample. That takes less than an hour as I take the shuttle in both directions.

We decided it would be best returned to Fresno immediately. The SCCA house is very good about this. They allow us to check out and credit us for the three days we did not spend there. Delta Air Lines, however, is not so cooperative. They want more money for the return flight to Fresno then they would charge if I just booked a one-way flight to Fresno. Instead, we book a direct flight from Seattle to Fresno on Alaska airlines. We arrived back in Fresno late Wednesday.

I will work half a day on Thursday and half a day on Friday which will more than pay for the additional cost of the flight.

It looks like the timetable is now as follows:

Monday, June 28: I have an appointment for the setup for radiation treatment at 9 AM. I plan to work Monday afternoon.

Tuesday, June 29: I plan to work all day.

Wednesday, June 30: I have an appointment with Dr. Person for a complete teeth cleaning, and consultation regarding keeping my teeth healthy during radiation treatment. At 11 AM, I have an appointment for follow up with Dr. Flam.

Thursday, July 1: I plan to work all day.

Friday, July 2: I plan to work in the morning.

Tuesday, July 6: radiation treatment begins and probably will last six weeks.

We Go on a Cruise to Alaska

June 13,2010
We leave on a long-planned cruise to Alaska, taking our nine tear old granddaughter Eva. This cruise is a great distraction, but it is difficult to stop obsessing about my condition. I often become tearful. I still am not sleeping well. Judy is very supportive but she is also very upset by all this.

Tuesday, June 15 2010

We dock in Ketchikan, Alaska.

I get up early because I will have cell service. I have a brief breakfast,go to the internet café, where there is good wireless signal, open my email and the phone rings. It is Dawson, the scheduler for Dr Ngheim. We have a long discussion during which time he gets Dr Ngheim conferenced in from Washington DC.

The bottom line is that I will need to go to Seattle Tuesday to see both Dr N and Dr P Wednesday. In addition, I will need to stay until Saturday so Judy can be shown how to inject the Beta Interferon. I will need to get my insurance to approve it as it is an off-label use for the drug. The cost is $3000, but I will pay if necessary.

I call Dr Teitelbaum’s office and tell them I need to cancel the surgery and to get copies of my records for me to pick up Monday.

Needless to say they call me back later in the afternoon to schedule the surgery.

I call Dr Flam and he has reservations about bypassing the surgery. Dr Teitelbaum also has such reservations when he returns my call later in the day. I promise both of them I will show them the literature I have from Dr Ngheim to support this decision.

I also arrange to pick up all biopsy reports from Dr Tashjian’s office.

Thursday June 17, 2010.

I am in better spirits after a good day in Juneau. My granddaughter Eva is such a delight to be with that I am able to get my mind off this. We watch her favorite movie including deleted scenes, and she has seen it so often she quotes the dialog with the actors. Ironically, the movie is The Titanic.

I have a large to do list for when I get home. I will see both Dr Ngheim and Dr Parvathaneni Wednesday morning and have arranged flights leaving Fresno late Tuesday arriving in Seattle Tuesday at 10:45 PM. Ironically, the flight back from the cruise originates in Seattle, nut Dr Nghiem can not see me until Wednesday and we decide we need to get Eva back to Fresno.

I have booked a room at SCCA House departing Saturday. I may receive injections of Beta Interferon into the site of the excised tumor mass as there is evidence this may control the disease in immune responsive patients.

In the absence of a tumor mass to inject, there is no precedent for this, but there are certainly tumor cells in the area. In fact, I may be feeling another mass in the area of tumor resection. Is this good news? They will have something to inject. Or bad news? Rapid tumor growth.

Gary Finds the MCC Group and Dr Nghiem

June 14, 2010. Much has happened. Through the resources and support in the MCC group, I have been in contact with Dr Ngheim of the University of Washington who is a world exoert in this disease. He was good enough to call me Saturday morning, June 12, and spent 45 minutes on the phone with me.

The good news is that I have been spared a radical neck dissection, a procedure which involves an extensive removal of lymph nodes in the neck, together with the sterno-cleido-mastoid muscle, the internal jugular vein, a nerve which supplies muscles to the shoulder and risk to other important nerves such as the vagus and the recurrent laryngeal nerve.

In addition, chemotherapy is not recommended as this is not shown to be helpful at this stage of the disease. In fact it may be detrimental as it damages the immune system which is needed to fight the viral component of thes disease.

I will need radiation treatment alone for the time being.

The bad news is that at this stage, the risk of distant disease is 50% and the risk of local recurrence is 20%.

Tomorrow, I will contact Dr Teitelbaum to cancel surgery.

I will call Dr Flam to let him know of these developments.

I will set up appointments to see Dr Ngheim for Thursday, June 24, as well as Dr Parvathaneni, the Radiation Oncologist, for June 23.

I will need to see Dr Mahdu John in Fresno on Monday or Tuesday, so he can plan the treatment under the direction of Dr Parvathaneni.

Additionally there are exciting developments having to do with tumor antigens and injections of interferon into the tumor. Dr Ngheim has suggested injecting the site where the tumor was removed from as there is likely to be residual tumor there.

I will need flights and hotel. The plan is to leave Wednesday early AM and return Friday late or Saturday.

Mt first surgical wound is healing well, but there is some edema around my ear and swelling of the incision. Little serious pain and I am off all pain meds.

I must give great credit to my son, Gary who researched out the disease and made the initial contact with the MCC group and got me connected with Dr Ngheim.

Without his help, I would still be nervously awaiting a major surgery followed by chemotherapy, all delaying the most useful treatment, radiation therapy.

Merkel Work-up

June 8,2010 I have a post-op visit to remove the drain from my neck. The facial nerve was not overly damaged as I can smile with both sides of my mouth and raise my eyebrows. I do have some numbness in my left ear.

He sets up an appointment with a dermatologist to check me for the primary.

We have used Dr David Tashjian in the past. He is unavailable and his patients are being seen by Dr Edgar Macias. He checks me out but finds only a small lesion on my leg which he biopsies and sends to UCSF dermatopathologist.

During this visit, I have my first emotional response becoming very tearful. Dr Macias is very comforting. I surprise myself with the tearful comment that I feel like I have let everybody down by becoming ill.

June 9, 2010 I have noticed a red spot in front of my left clavicle. I return to have it biopsied.

I go to Valley metabolic Imaging for a PET CT

It shows one questionable lymph node in the left neck, level 2, possibly the same node as on the original CT. I have the CD of the images but it does not work well on my computer.

June 10, 2010. I play poker every month with a group that includes Tom Hackett, who is an oncologist. I call him and ask him to care for me. He refuses saying that he doesn't take friends as patients but strongly recommends his associate, Dr Marshall Flam. I have known Marshall for many years and have great respect for him. He ia a very knowledgable oncologist and I trust his judgement.I see him Thursday morning. He spends almost two hours with me going over the reports, calling my Docs including the pathologist, and doing my physical. He searches for a primary and suspects a lesion on my left cheek.

He recommends a radical neck dissection followed by radiation treatment. If the primary is not found, chemo before the radiation although he says he has no evidence that it will help. He says it may because Merkel is histologically similar to small cell carcinoma of the lung. He says he would not have a problem if I declined the chemo.

I return to see the dermatologist for a biopsy of my cheek, and he also biopsies a small lesion on my back.

June 11,2010. I go to work in the morning to try to get my mind off everything. I work 8-12 AM. It doesn’t work very well because all the other Radiologists come to visit and offer their words of encouragement.

I go to the bridge club and have a fine game, coming first of 9 tables. Bridge is more distracting than work.

My oldest son does some research on the internet and finds the MCC group.

I Have Surgery

May 13. Dr Teitelbaum does a fine needle biopsy of the superficial mass. I have to sweat out the weekend to get the results. The procedure was almost painless. He did two passes with a 21 needle. The first return was bloody. The second return was not visible to me.

May 17 or 18: The biopsy result is reported as a pleomorphic adenoma of the salivary gland.. This is a generally benign tumor although there are some malignant forms of it. I am very much relieved, but I have my doubts. Why would it arise outside the gland? This tumor can be multicentric.

We now have to arrange for surgery. The family is coming to visit for my Mother-in-law’s unveiling. As the lesion is benign, there does not seem to be much urgency to do this. The earliest I can schedule the surgery is June 3, almost a full month after the mass was discovered.

June 3 2010: This is our 48th wedding anniversary. I arrive at the hospital 7:15 AM for the surgery scheduled for 9:15. The procedure is to be done at St. Agnes Medical Center in Fresno. I was on staff there for about 30 years in the radiology department starting in 1976. The assistant surgeon is to be Jerry Moore, who I have known almost that time. After some lab tests and an EKG, I meet the anaesthesiologist, Gary Grimes. He is very kind and reassuring. He gives me Versed and I wake up in recovery with no memory of even going to the OR.

Dr Teitelbaum checks me after surgery. I can smile with both sides of my mouth. (The dreaded complication of parotid surgery is facial nerve injury which leaves a person with weak facial muscles.)

He reports to me that the frozen section of the lymph node was benign. Things are looking good, but I still have reservations about the real pathology.

June 7 2010. I am feeling well enough to go to the bridge club. I keep my cell phone off. After the game I have a message from Dr Teitelbaum to call him. I get his office but not him. I page him. I call Judy and she says she spoke to him and although he would not give her any details, the news is “not good”.

Dr Teitlebaum calls back and says I have a Merkel Cell Tumor. All the lesions removed were metastases to lymph nodes. The frozen section was a false negative diagnosis.I look this up and find it is a malignant tumor of the deep layers of the skin. So where is the primary?

Friday, July 23, 2010

Questionably Enlarged Lymph Node

Parotid Lesion

CT Scan Images

I Discover a Mass in my Face

My Battle with Merkel Cell Carcinoma

About me.
I am a 69 year old male diagnostic radiologist from Fresno. I have been in Fresno for almost 35 years, having left my radiology group a few years ago. I now work about half time as a pool physician at Kaiser.
I am married 48 years. I have 3 sons, 4 granddaughters and a grandson on the way.

May 6 2010:
I am visiting my mother in Montreal and I notice a lump in my face in front of my left ear. It is about 2 cm in diameter, firm, and mobile. It seemed to appear completely out of the blue, There is no pain. I can’t feel any lymph nodes in my neck.
May 11 2010:
I am back in Fresno and get an informal ultrasound of the area. The mass is superficial to the parotid gland and is solid and vascular. In the superficial lobe of the parotid is another similar appearing mass of about 1 cm. I call my friend Richard Weinberg, an ENT specialist in Fresno. He tells me to come right over and he will take a look at it. He examines me and says he doesn’t operate on the parotid, and has me seen by Dr Benjamin Teitelbaum. I have not heard of him before but Richard says he is the best for the parotid in Fresno. He examines me and sends me for a contrast enhanced CT scan of my neck.
May 12 2010:
I go for my CT scan. I review the images with Leyla Azmoun, the neuroradiologist at Sierra Imaging Associates.The scan shows the same findings as the ultrasound but there is a 1 cm lymph node in the neck. It is at the borderline between normal and suspicious.