My Follow-up With Dr Flam

Judy went with me for this visit. The appointment was for 10:00 AM but we knew we were in for a long wait when we saw tho waiting room was almost standing room only. I guess when you have cancer, you better leave your type A personality at the door. In addition to being the first day of a short week because of Memorial Day,  Dr  Flam was just back from vacation.
I had the usual labs, and was seen about 11:45 by the doctor.
The labs were not bad. WBC back down to 10,000. Platelets 100,000 and hemoglobin down to 11.0.
Overall, Dr Flam was pleased. I showed him some irritation in the back of my scalp which he called small pustules, likely staph infection, and suggested I wash the area 3X daily with pHisoderm soap. He also suggested I stop wearing my baseball cap, the band of which could be causing irritation. He was quite surprised that my hair was not falling out yet. Perhaps I shaved it off prematurely.
We now have a plan of action. One more cycle of chemo followed by a PET/CT, most likely around June 24. 
On a sad note, my mother seems to be doing badly. She is down to 66 pounds. She is becoming more and more withdrawn and depressed.
On a happy note, Saturday we went to the wedding of our ex-daughter-in-law, Margaret. It was very nice. We have some photos.
Rather than post the photos in this blog, I include a link to the 
photos.

The photos include Gary, Dana who was  a bridesmaid at her husband's ex wife's wedding, Eva a Jr. bridesmaid,  Sara, age 4, Bel, age 2, Judy, me, and one which includes the bride.
Families are so much more complicated than they were when I was growing up.

My Follow-up Medical Appointment

Today, I went back for my appointment. Dr Flam is out of town so I saw his assistant, Marina.
I had labs done as per the routine. Today, I was fasting as I wanted to document a normal blood sugar fasting. The last was 176, and fasting, it was 110. This is an indication that I am not diabetic. Hemoglobin is 11.6, up from 11.2 two weeks ago, platelets normal at 162,000. The interesting result is that my white count is 20.8 thousand. This is elevated and raises the possibility of a significant infection. However, an internet search suggests that this is result of the injection of Neulasta.
I do not have symptoms of infection apart from mild sore throat and gum tenderness.
My constipation has passed, so to speak, after stopping Zofram, and there is no nausea. My mouth is dry. Taste is diminished. We went to the salad bar last night for dinner. Most evident is the loss of the ability to taste sweetness. The tapioca pudding, a favorite of mine tasted like they forgot to put the sugar in it.
The mental fog and fatigue have disappeared. 
My hair is still there. Perhaps I got the buzz cut prematurely. Hair growth has slowed, and I need to shave only every 3-4 days.
I plan to return to the bridge club to play Friday afternoon.
We are invited to a wedding on Saturday and we plan to go. The bride is our son Gary's first wife, Margaret, (Eva's Mom). They are all on good terms. I would like to see a survey of what percentage of people are invited to their ex daughter-in-law's wedding. I would guess not more than 15%. We were happy to be included.
Eva will be a junior bridesmaid, and I hope to grab a few photos for the blog.
Our very good friend, Andrea, sent me an email about playing the "Cancer Card". She is a miraculous 20 year survivor of breast cancer for which she was given only a short time to live.
"One day, when I was still in the middle of pretty heavy chemo, we decided to go to the Spaghetti Warehouse for dinner. The place was mobbed and people were all but hanging from the chandeliers. In horror, I mentioned to the hostess that we better not stay because I was so fatigued from all the chemo and couldn't  sit up long enough to both wait to be seated and eat dinner. She assured me that there would be no problem,  and =Bingo!=we were the next ones  seated. Hmmm, I thought to myself. Magic. This isn't all bad."
I don't plan on playing the card routinely, but will keep it in mind as my "ace in the hole".

A Clarification About the Subpoena

Rereading my last post, I am afraid I may have left the wrong impression about who issued this subpoena. It came from the attorneys representing St. Agnes Medical Center of Fresno. It did not come from the plaintiff's attorneys.
The contact name is an associate at the law firm of Jones Day, Los Angeles office. The letterhead lists 32 locations including Beijing, Tokyo, Paris, Hong Kong, New York.

The world did not end, so I will continue chemotherapy

Sunday afternoon, 5 days after Cisplatin, 3 days after my last dose of VP16.
This week has produced more severe symptoms than round 1.
Nausea has been worse. I have still been able to control it fairly well with the medications. The Zofram seems to be associated with constipation and I am now on my third day day without any action. I will not make the mistake of straining and will await the effect of prunes and laxatives.
Yesterday, I treated the nausea with a product legal in California, and I must say it was very effective.
In fact, last night I had the best night of sleep in a few weeks. 
Today is the first day I have not felt the severe fatigue of the past few days.
My taste buds are slowly fading away, but I have not completely lost my sense of taste. However, even after the "product", snacks did not taste as good as I might have expected.
I expect that in the next few days I will feel better, but round 3 will be worse than round 2.
I have an appointment with Dr. Flam Tuesday morning but he will be out of town, so I will see his assistant, Marina. The main thing will be the labs, and I will go fasting to the appointment to get a better idea about my blood sugar which has run in the 170's after Boost Plus. 
I received a subpoena for tomorrow morning to testify in a trial where a former associate of mine and St Agnes Medical Center are in a dispute. I received the subpoena Thursday night for Monday morning. I was never deposed or given any warnings. I called the attorney who was named on the subpoena, and after a brief conversation in which I played the cancer card, I was told they wouldn't need me. I guess having cancer isn't all bad.

End of Round 2, I'm Still Standing

Today, I completed round 2 of chemotherapy. I still have to go back tomorrow for a shot of  Neulasta to build up my white count. My labs today were all good except my blood sugar which is about 175, bit taken after Rice Krispies, raisins, bananas, and Boost Plus. I think this accounts for the elevation. I am more nauseated this time than last, and have added generic Compazine to my list of medications. I think it is giving me a Parkinsonian reaction as I notice a tremor as I type this. My mouth is still quite dry, my taste buds have not deteriorated further, and I have been getting up every 2 hours to empty my bladder. Otherwise I feel well.
Judy has been having shoulder pain without any trauma but with a sudden onset. I presume it is bursitis.
Rocky woke us up this morning with vomiting. There's never a dull moment around here.
We went to a birthday party for Bob Savluk Saturday evening  (May 24). He is a member of our Poker group and was celebrating his 60th birthday. It was a wonderful casual but eloquent party.
Another member of the poker group, Howard Watkins took photos. Below are two of Judy and Me, one with a hat and one without.

My hair has not yet begun to fall out but this is a preview.
Judy looks great in these pictures, and she has been wonderful during this battle. I couldn't ask for better care and support than what she has so cheerfully offered.

First Round of Chemotherapy, Observations After Two weeks

A side effect of my chemo has been a dry mouth, loss of taste, and a lack of desire to drink much fluid. I began to note my bowel movements resembled small marbles, which passed without difficulty. However, for a few days prior to last Saturday, (May 7), nothing. No urge to go, no abdominal discomfort. I began to take oat bran, Metamucil and Colace. Still, nothing.

Saturday morning, I finally felt the urge to go. Into the bathroom, seated on the toilet, and the struggle began. I am trying to push out a solid rock, hard as steel, painful and immovable. With  due respect to all women who have delivered a baby, this must be as close as I can ever come to that. I wanted an epidural. I would have cheerfully done an episiotomy on myself if I could. It got to a position, halfway in, halfway out, and got stuck. I trained in ob/gyn as a resident for 6 months. I wanted to try obstetrical forceps. After about half an hour of pushing, finally, success. I was bleeding. My rectum was on fire, I grew hemorrhoids I never knew I had. They still have not gone away, 4 days later. Every visit to the bathroom gives me a chance to relive this experience. 
I visited Dr. Flam this morning. He has a cold and wore a mask and sanitized his hands. I hope I don't catch anything. All is going well.My white cell count has risen from 3.8 to 6.6 thousand. My platelet count has improved from 67 to 116 thousand. However, there has been a small drop in my hemoglobin from 11.7 to 11.2. I suspect this may be at least in part from my forcing fluids to keep from mixing more concrete in my colon.
Other symptoms include dry mouth, inflammation of the gums and nose, and leg cramps. The leg vramps seem to effect new muscles in the side of the calf rather than the usual calf cramps. They don't respond well to external squeezing, but seem to improve with walking and a heating pad.Dr Flam recommended 
CO-Q 10, 200 mg for this. I will start with 100 mg.
I am also taking Colace, a fiber laxative and will try prunes.
I have to say that if I didn't know I have cancer, life would be pretty good right now. I am not working and am enjoying spending time in a non-productive way. I am still going to the bridge club and I have confirmed on the ACBL Web Site that i have attained the rank of Gold Life Master. On Monday afternoon, Bert and I came first of 11 north/south pairs.


All this has taken a toll on Judy who composed this small essay to describe her feelings.


FIND THE TIME
You're so busy.
Never enough time to do all the things you need to do.
Running here, running there, wishing you had more free time.
And then your life changes.
You're diagnosed with cancer.
Suddenly you have the time to run from doctor to doctor, being poked, X-rayed, Radiated and getting chemo.
Amazing how life suddenly changes and all those important things that kept you so busy
Can now so easily
Be put on hold.

Polyoma Virus Information

This stuff is beyond my ability to comprehend, but from what I can put together, the story is like this.

In the 1950's, there was pressure to begin inoculating the general population against Polio. This came both from the general population as there was a high level of anxiety about the disease which caused paralysis and death among many of its victims, and also from the companies racing to get the vaccines on the market for financial gain.

The initial doses of the vaccine were harvested from monkey kidneys and the virus was inactivated by formaldehyde. The Polyoma Virus was a contaminant, slightly more hardy and not inactivated by the amounts used. I have read some estimated of up to 50,000,000 doses of the vaccine were contaminated before they switched breeds of monkeys. The vaccine was given in the mid 50's.

The evidence of a cause and effect relationship between MCC and the virus is circumstantial. The virus is present in 80% of MCC patients in the USA, but not more than 60% of the general population. People with a reduced immune response are more susceptible to the disease.

MCC can be effectively treated locally by Beta Interferon, injected locally. Beta Interferon is an anti-viral drug.

The Polyoma virus is not found in MCC cases in Australia.

Please Note. The virus has mutated  and there is no threat of human to human transmission of the virus. 

Below are some abstracts.

Merkel cell polyomavirus and MCC

2008: Feng, Moore, Chang discovered a new human polyomavirus, the Merkel cell polyomavirus Virus integrates in the genome of most MCC tumors in a clonal pattern (Feng H et al., Science 2008) Viral DNA present in ~80% MCC tumors MCPyV proteins are present and persistently expressed in > 50% of the tumors

~60% of US population has specific antibodies to the MCPyV capsid protein (Carter JJ et al., J Natl Cancer Inst. 2009) ~90% of MCC patients are sero-positive to the MCPyV capsid protein supporting a continuing role for this new virus in most MCC tumors

Mutation pattern in the large T oncoprotein are highly suggestive of a role in this cancer (N terminal – pro-cell cycle portion is conserved: C terminal – genomic instability generating region is deleted in most tumors) (Shuda et al., Proc Natl Acad Sci U S A. 2008)

Additional References:

1. Garneski KM, Decaprio JA, Nghiem P. Does a new polyomavirus contribute to Merkel cell carcinoma? Genome Biol 2008; 9(6):228.  Click here for a PDF.

A review of polyomavirus biology and its possible relation to cancer.

2. Garneski KM, Warcola AH, Feng Q, Kiviat N, Leonard JH, Nghiem P. Merkel Cell Polyomavirus Is More Frequently Present in North American than Australian Merkel Cell Carcinoma Tumors. Journal of Investigative Dermatology 2009; 129, 246–248.  Click here for a PDF.

North American and Australian tumor samples were evaluated for presence of MCPyV and a higher incidence in North American samples were positive for MCPyV when compared to Australia, suggesting a possible strain variant.

3.  Feng H, Shuda M, Chang Y, Moore P.  Clonal Integration of a Polyomavirus in Human Merkel Cell Carcinoma.  Science 2008; 319:1096-1100

A technique called digital transcriptome subtraction (DTS) was used to identify a new virus, which is a previously unknown polyomavirus that we call Merkel cell polyomavirus (MCV or MCPyV).  MCPyV sequences were detected in 8 of 10 (80%) MCC tumors (lower incidence in non-MCC tumors).

4.  Carter J, Paulson K, Wipf G, Miranda D, Madeleine M, Johnson L, Lemos B, Lee S, Warcola A, Iyer J, Nghiem P, Galloway D.  Association of Merkel Cell Polyomavirus–Specific Antibodies With Merkel Cell Carcinoma Journal of the National Cancer Institute2009; [Epub ahead of print].  Click here for a PDF.

Merkel cell polyomavirus (MCPyV) has been detected in approximately 75% of patients with the rare skin cancer Merkel cell carcinoma. We investigated the prevalence of antibodies against MCPyV in the general population and the association between these antibodies and Merkel cell carcinoma.

My Visit With Dr. Flam

First, the labs were done. My Platelet count has dropped from 236,000 to 67,000. My white count has dropped to 3200  from 6400. My Hemoglobin is stable at 11.7 grams. When I saw these results, I was somewhat worried but Dr. Flam seemed to feel that this was a normal reaction to the chemo and that I was doing well. He is encouraged by the improvement in my symptoms, which he feels is an indication that the chemo is working. In fact, he is suggesting imaging after the second round of chemo, possibly with an eye towards following up with more radiation to the posterior mediastinal mass, assuming it is responding well to the chemo as verified with imaging.
This is all very encouraging.
Meanwhile, I am having only minor symptoms. Constipation for which I have started Colace (generic).
My sense of taste has lost something since I started the chemo. No metallic taste, but food does not have the full flavor it had recently. Part of this is a holdover from the radiation treatments. My mouth remains dry and there is some inflammation of the gums.
I finally have learned that I do indeed have evidence of the Polyoma Virus. I  have antibodies to the T-Antigen of Merkel cell polyomavirus, according to Dr Nghiem. I suspect I received it in the mid 1950's when given the Salk Vaccine.
I have been interviewed for the the NCI Cancer Bulletin, a free online newsletter published every other week by the
National Cancer Institute. The interview was conducted by phone today. When the article is printed, I will post a link to it. The interview was conducted by Edward "Ted" Winstead. He has previously written about MCC for the NCI.

Article 1
Article 2

Update Five Days After Cisplatin

It is Monday, May 2, 2011. On Friday, I had the third session of chemotherapy with VP16, along with all the other medications they routinely give.  This went off without incident except that they wanted me to have labs drawn, and made me wait for the lab tech to draw the blood when I could have been starting the chemo. It makes no sense to stick a vein when the port is going to be used the same time for chemo. On days when there is no chemo, get the labs from a vein. On days when there is chemo, get the labs from the port. This resulted in a half hour delay in getting started, no big deal.
On Saturday, I went for my shot of Pelfilgrastim (Neulasta), a drug which stimulates the growth of healthy white blood cells. The shot is given into the subcutaneous tissues. I took mine in the left arm. There is a 30% incidence of bone pain from this drug but I had no symptoms.
Neulasta Link
On Wednesday, I have an appointment with Dr Flam. The following Wednesday, again, and the second round of chemo will begin May 17.
I am feeling fairly well at this time. The spasms in my chest have reduced. Could this mean the chemo is working? I am more fatigued than I am used to, going to bed at 10:00 PM instead of close to midnight. I am having some constipation without significant discomfort, and waking every 2 hours to void. I suspect this may be due to the Zofram, which I stopped this morning as I am not at all nauseated.
Zofran Link
The surgical site in the abdomen and the port insertion site have healed well.
I a trying to resume some activities, going to the bridge club today and tomorrow morning, driving, walking the dog and watching the inept San Francisco Giants blow baseball games.
I hope to post a follow-up after my visit with Dr Flam.
I thank the so many people who have offered their prayers and encouragement.