Thursday, April 28, 2011

Chemotherapy-Day 2

Chemotherapy-Day 2
All went according to plan. I arrived at 8:15 AM and the infusion room was empty. 
First was Solucortef and anti-nausea medication. Then 1000 cc of normal saline, followed by the VC16. I was out by 12:15. The needle was left overnight in the port but I had them pull it today so I can take a real shower tonight. The skin over the port seems to be healing well. The steri-strips stay until they start to fall off. During my treatments, several patients arrived for treatment needing new IV's. Watching the interaction between patient and nurse reinforced the conclusion that I had made a wise choice to have the port placed.
I am having very few symptoms. My voice is slightly hoarse and I am having some constipation. I managed to pass some rocks which seemed to help. I'll start Metamucil tomorrow morning.
I am getting the occasional hiccups. I was given a prescription for Reglan which I will try if the symptom gets worse.
The generic for Zofram anti-nausea drug was not approved by by our Medicare Part D provider. $21.95 for 8 pills. An advisor at  Dr Flam's office, Patty, who was very helpfull, established my right to coverage under Medicare Part B as I am having "in-office chemotherapy". This reduced the price to $7.30. Out of  interest, she called Winton's Pharmacy in Fresno and got a quote of $1200 for 100 non-generic Zofram. What a racket.
Tomorrow should be a repeat of today, and then a brief visit Saturday for a subcutaneous shot of Neulasta.
Symptom to expect as a result of the Solucortef: Insomnia.
Symptom to expect as a result of Chemotherapy: Fatigue.
What a combination. Fatigue but insomnia. Can't stay awake, can't fall asleep.
So far it is a draw, as I fell asleep without difficulty, but my old man prostate woke me up after about 3,5 hours and then it was very difficult to get back to sleep,
Stay tuned for updates.

Wednesday, April 27, 2011

Chemotherapy. Day 1

I arrive at The hematology Oncology office almost promptly at 8:03.
I sign in and sit and wait. Apparently Wednesday is the busiest day and they have added Dr Rao to the practice and he brings 125 patients.
After about 25 minutes, they call me to the lab. I refuse to submit to more labs because Dr Flam ordered the labs at St Agnes to be done Monday, just 2 days earlier, after a discussion which went something like this.
Dr Flam: You'll need labs before the Chemo. I could just get them here or at St Agnes since you'll probably need labs before they place the port.
Me: OK, let's get them at St Agnes.
Dr Flam: OK. I'll write the order.
And he did.
However, the labs are not immediately available, not having been filed in my chart.
Dr Flam: We can get them from the computer.
Nurse: The computer is down.
They did find my labs and my Hemoglobin is creeping up towards the normal range, at 11.8 from I think 11.1 three weeks earlier. 
So they will draw blood from the port for serum iron and iron binding capacity.
9:00 AM. After a brief examination, I am sent to the small room for my Chemo. There are about 5 LazyBoy chairs down one side of the room. I grab the only vacant one. There are four sofabeds with elevated knee support on the other side of the room, all empty but soon to fill up. To my left are two very large bathrooms with folding doors. I decide they are not very private and will be used only in an emergency.
A very experienced nurse named Bill checks my port. He accesses it using a special needle called a Huber needle which has a 90 degree bend and tapes easily to the skin. Before inserting the needle, he numbs the skin with Ethylene Chloride spray, and I don't feel the needle. They draw my blood and begin treatment.
I am given Aloxi 0.25 mg bolus, 
Next was Emend, 150 mg.
I am pre-hydrated with 500 cc of normal saline  to which potassium chloride (KCl)  and magnesium sulfate (MgSO4).
Sorry, I don't know the doses.
At about 10:30, they bring in the big gun. Cis Platinum 170 mg with 40 mg KCl, 12 mg of MgSO4
and 20 mg of Lasix. Lasix is a drug which increases urine production. It is used to prevent nephrotoxicity. (Kidney damage). 10 mg of decadron is also given. It is basically IV cortisone. This is in about 3000 cc of fluid, I think normal saline.
The infusion is about 3 hours. I sleep part of the time. Judy goes home and comes back at lunchtime with a sandwich from Subway, a soda and lemon yogurt.
Judy leaves to pick up my anti-nausea pills. 
Zofram (generic name is Ondansetron) 8 mg twice a day.
Compazine (generic name is Prochlorperazine) 10 mg as needed 6 hours apart.
The insurance may not cover the Zofran, about $21 for 12 pills. No biggy.
At about 2:45, The second gun arrives. 100 mg of VP16 in 250 mg of normal saline.
I lost count of the number of visits to the bathroom, but my best estimate is 7. Fortunately, I found a more private bathroom.
I must say that the first day went surprising well. I was not sick. I had no nausea. I was comfortable and I got to meet new people.
To my left was a young man, about 35, with a lovely young woman, perhaps his wife or sister. He was also receiving cis platinum.
He has a rare testicular cancer, choriocarcinoma and they have given up on trying to cure him. The treatments for him are designed for slowing the spread of already widespread disease. 
To my right was a man who was quietly playing cribbage with a woman, I presume his wife. Suddenly, he developed terrible chills and was in agony for about 20 minutes, perhaps because of an infected port. After the chills resolved, he was vomiting.
We left at about 4:15 PM.
I return Thursday and Friday for shorter sessions, just the VP16.
On Saturday, I have to go for an injection to stimulate my bone marrow. I think it is Neulasta.
I will post again about this.
After we returned home, it was a quiet evening. I have had no symptoms. I ate a good dinner, drank some fluids and we watched the Giants (they lost) and American Idol (James Durbin would get my vote if I voted).
I have now accumulated enough master points on line to become a Gold Life Master of the American Contract Bridge League.
So what did I learn today?
1. Chemo may not be as bad as I expected.
2. There are other patients who are much worse off than me.
3. I can find the bathrooms blindfolded while dragging my IV pole.

Tuesday, April 26, 2011

I get a Buzz Cut

Chemotherapy begins tomorrow. I decided that I don't want to wait for my hair to fall out so I got it all cut off today. Here is the new hairless me.
The bandage is from the port insertion. Below is a photo of my chest to show the location of the incisions.
The larger bandage covers the incision through which the port is placed. The port lies under the skin. The smaller bandage covers the location where the catheter is placed in the jugular vein. They tunnel the catheter from the port to this incision and then insert it into the vein. It is all done with local anesthesia, but thanks to the magic of Versed , I have no memory of this.

This is the best photo I could find of the port itself from the Bard website. There are two wells into which the drugs can be injected. Each is delivered through a separate lumen in the catheter to the Superior Vena Cava. The ports are strong enough to take a pressure injection for contrast enhanced CT. Supposedly, the port does not degrade CT or MRI images.
I am feeling quite good. There is mild discomfort at the incisions controlled well by Extra Strength Tylenol, a drug which I rarely take as it usually does not work for me. I prefer Advil but they want me to stay off it for now.
I hope to be feeling well enough tomorrow to post my experience with the first day of chemo.

Monday, April 25, 2011

Port Inserted Today

We arrived at St Agnes Medical Center at 7:00 AM.
I met Joe Cerillo, a longtime colleague with whom I have worked 20 years or more. He is a technologist who works in interventional radiology. He told me he just completed chemo for non-Hodgekins lymphoma. He had a port which was recently removed. I wonder if his disease is the result of radiation exposure. For that matter, I wonder if my condition is also caused by radiation exposure. I know there is a relation with sun exposure.
I met Dr. Nguyen, an interventional radiologist. He has placed more than 300 ports. He likes to place them in the subcutaneous tissues of the right upper chest. That was fine with me as the left jugular vein is scarred by the radiation treatments. The procedure went off on time and without incident. It is a duel lumen power port, meaning that there are actually two ports to inject, so two drugs which may not mix well can be injected simultaneously. It is capable of receiving injections from a pressure injector such as the type used to inject IV contrast for CT scans. It looks like it is made of plastic so it will not interfere with CT or MRI imaging.  The port itself sits on my upper right chest wall. The catheter is tunneled to the lower neck where it enters the jugular vein.
Thee procedure was completed by 10:00 AM and I was able to leave shortly after 11:00 AM. It is now 1:00 PM and there is no pain from the incisions. I have no memory of the procedure itself, due to the effects of Versed and Fentanyl.
Joan Rivers described "Jewish Natural Childbirth" as follows. Put me out with the first pain and wake me up when the hairdresser comes.
This was the "Jewish Port insertion."
As I will not begin chemo until Wednesday, I will have a buzz cut of my hair tomorrow. That way, I will not have to worry about sweeping up falling hair.
I hope to post a picture of myself tomorrow, pre chemo with a buzz cut.

Friday, April 22, 2011

My PET scan results

I went for my PET scan today. I have been having increasing discomfort in my lower chest and anticipated that my posterior mediastinal mass would be larger and pressing on my distal esophagus causing the symptoms. I was hoping there would be no evidence of new disease. This Merkel Cell carcinoma can grow as fast as any malignancy I know about.
I had to be on a sugar-free diet for 24 hours prior to the examination. Last night, we had Gary, Dana, Eva, Sara and Bel over for a mini-Seder. I could not enjoy much of the cooking, but everyone had a good time.
No breakfast this morning. I arrived for my scans at 8:15. They put me in a very cold room with a heating pad on my arm to start the IV. Of course, in the cold, your veins constrict, but the IV was started without incident. My blood sugar was 105, a good number. They injected the radioisotope without incident and then I had to wait 1 hour for it to spread through my body. It concentrates in areas of high metabolic activity, such as tumors, healing surgery sites, brain and kidneys. There was alot of activity in my brain, probably, like Cassius from Julius Caesar, I think too much.
After the hour, it is 35 minutes to be scanned with the warning to stay perfectly still to avoid image degradation. Of course, as soon as the scans began, my ear and my nose began to itch. I needed to clear my throat, and the blowing of cool air over me for ventilation made my face itchy and gave me the urge to sneeze. 35 minutes seemed like hours. I left at about 11:30 AM and returned at 2:00 PM to review the results with Dr. Dan Stobbe. He is a longtime colleague and friend.
Below are sample images from the scans.
The image on the bottom right is a coronal image. The areas in black show high levels of activity. The brain at the top, the bladder at the bottom, and the tumor in the middle. The image at the top left is a color rendition in the axial plane showing my heart in gray, my lungs in black, and the tumor in yellow in front of the spine which shows up in white. The esophagus shows up on other images, pushed to the left. This is the cause of my symptoms.The tumor now measures 5.8x2.6x5.0 cm. On March 17, it was 2.6x3.8x3.7. The original measurements last November were 4.5x3.7x3.5.
There was no other convincing evidence of tumor growth.
So what does this mean to me?
The good news is that there is no new disease. This mass is causing my symptoms and there is no unexpected finding. It can be followed with serial PET scans to monitor the effectiveness of treatment.
Should the chemo shrink the mass, it might be removable by laparoscopic technique assuming no new disease develops during the chemo.
The bad news is that the experimental treatment with a small radiation dose was not effective, although the mass did initially shrink.
I received a call from Dr. Flam's office delaying the start of chemo to next Wednesday.
After visiting Dr Stobbe, I went to see my CPA who has my tax audit under control.
Some good news. I have made it to within 1-2 points of the 2500 I need to become a Gold Life Master at Bridge. I will get there before the Chemo begins.
I hope to post again to describe the insertion of the port from the patient point of view. I have inserted many ports, so the difference in perspective should be interesting.
This morning, there were flowers on our doorstep. Beautiful roses.
Thanks Bonna.

Thursday, April 21, 2011

An Innocent Man

I read a book by Gresham, not a novel, about innocent men convicted of murder on death row. It was called "An Innocent Man". 
I think in some ways I am the Innocent Man. I may be on death row. My team of attorneys is my medical care providers. My appeals are through chemotherapy. The judge is God. I committed no crimes. I may be on my final appeal.
After a trouble-free day of travel, I am home. I will have pleasant memories of this trip. My Mother is frail and weak, but seems to be very stable for somebody who will soon turn 94. 
We had an unexpected visit from Willie Kravitz and his daughter Meredith on Monday. Willie is "the 4th son". He and his wife Elaine became very close with my parents when they lived in adjacent apartments. My parents baby-sat for Meredith when she was an infant, but she is now all grown up.
We had no Seder to go to because of issues which my brother's wife Gertie has with my mother, so we had dinner at Place Kensington. They did serve Matzah-ball soup, Gefilte fish and "Matzah Bread".
We saw an interesting movie called 'Gentleman's  Agreement" with Gregory Peck, from 1947 about anti Semitism. A Christian writer pretends to be Jewish to research an article on anti-semitism. If you have a chance to see it, it is worthwhile.
Here is the countdown:
5. Today, 
4. Friday. PET scan in the morning, CPA for my audit and to prepare my belated 2010 tax return in the afternoon
3. Saturday
2. Sunday, my last day of reasonable comfort
1. Monday. 7:00 AM to St Agnes for insertion of a port
0. Tuesday. Chemo begins.
I hope to be able to continue this blog through my chemo.

Sunday, April 17, 2011

My Visit to Montreal

It is Sunday, April 17, 25 days after my laparoscopic surgery. The incisions are healing well. There is some discomfort in the area of the largest incision which is at the belt line. I feel more comfortable not wearing a belt.
I arrived late Friday, about 1 1/2 hours after the scheduled arrival time, delayed by a storm in Chicago. Lenny met me at the airport and took me home to have a snack of Montreal bagels and lox.
I met them again for brunch Saturday, and then they left for Toronto for Passover.
I arrived at my Mother's place and met my brother Robert and my nephew Peter. We went to Ty Breiz for lunch. I had my favorite Montreal Onion soup. It was great, Later in the afternoon, both Mom and I had GI upsets, perhaps because of MSG in the soup.
Today, I spent the day with my mother again. We spent the morning watching the 25th anniversary DVD of Les Miserables. It was wonderful, and I was in tears the whole show. We were visited by Andrea and Ben and my new Grand-niece who is only 2 weeks old. Her name is Alexandrea Lauren Urovitch, nicknamed Alex. My brother was also there.
They brought chinese food for lunch. After they left, Robert and Mom and I went for coffee at The Second Cup. I hung with my mother until 9:00 PM.
I have to say that I am not feeling 100%. I still am having GI upset.
My mother also seems as frail as I have ever seen her. She has also had GI upset and at dinner today, complained of dizzyness. I was somewhat concerned, but about an hour later, she ate a good meal of Won Tons, and I felt better about her.

Here is a photo of Alex and yours truly. She slept in my arms for about half an hour. You never forget how to hold a baby.

Thursday, April 7, 2011

A Brief break, Then 3-5 Months of Chemo.

My Pre-Chemo Photo
First, the good news.
I have my reservations for Montreal. I leave Fresno April 15 and return April 20. 
I am looking forward to spending time with my mother and meeting my new, as yet unnamed great-niece, as well as with my brother Robert my niece Andrea and her husband Ben, the proud parents.
I am recovering well from the surgery and should be feeling fine for the trip. When I get home, it will be down to business.
I called up Dr. Flam yesterday and he agreed to see me yesterday although my appointment was for April 12. He is on board with my trip to Montreal as I need time to heal from the surgery before the chemotherapy.
He patiently answered all my questions. I have discussed this with Dr. Nghiem and he is in agreement.
I did have the Pneumonia Vaccine at this visit.
I will get home April 20, a Wednesday.
On April 22, the Friday, I am scheduled for a PET scan to look for any evidence of new disease.
On Monday, April 25, I will go to St. Agnes Medical Center, my old stomping grounds and have a port inserted. I will also have lab work done.
On Tuesday, April 26, Chemo begins. Cisplatin and Etopiside IV.
On Wednesday, April 27, Etopiside and IV fluids to protect my kidneys.
On Thursday, April 28, repeat of Wednesday
On Friday, injection of a drug to stimulate my bone marrow. I didn't catch the name but will post it when I have it.
On Mondays, lab work to follow my red and white cell count and renal function.
Other than that, I have the next two weeks off and the next cycle begins May 17.
After three cycles, repeat imaging to try to determine if it is working.
A total of as many as six cycles is planned if I can tolerate it.
I have a package listing the side effects and how to mitigate them.
During the injections, drugs are given to combat nausea. I will lose my appetite, likely suffer nausea, vomiting, diarrhea and constipation. I may develop sores in the mouth and throat. There will be alteration of sense of taste, something I complained bitterly (pun) about when I had the radiation. Again dryness in the mouth.
Peripheral neuropathy, with numbness of the extremities is common. There can be liver and kidney damage.
Hair loss! That will be the least of my worries. I don't have that much hair left.
Dr Flam says I should be able to spend time with my grandchildren during the chemotherapy unless they are obviously sick. I should be able to go to the Bridge Club and even work during the off weeks. I am not planning to work at that time.
I am optimistic that I can get through all this with minimal side effects, as, apart from my cancer, I am in good health. In fact, since we made the diagnosis of Merkel's, I haven't had so much as the sniffles.

Tuesday, April 5, 2011

A Plan

I had a long conversation with Dr. Nghiem today. He is not against my having chemo, but is also not strongly in favor of it. We discussed the pros and cons, and I have come to the conclusion that it is worth the risk and misery to try to defeat this monster of a disease. Judy has come up with a great idea. it is not an urgent matter to begin the chemo immediately. Unless Dr Flam is able to convince me otherwise, I will visit my mother in Montreal and on my return, have a port placed and begin the chemo.
I will likely leave towards the end of next week and stay for about five days.
My Niece and nephew in Montreal just had a baby girl, as yet unnamed, and I will have the opportunity to see her as well.
This will be my last chance to travel for a long time so I will make the most of it.

Monday, April 4, 2011

12 Days Post-Op

Today I had my follow-up appointment with Dr. Felix.  I never cease to be amazed at the way communications seem to fail. When I made this appointment, Dr. Felix wanted me to get a CBC. His office was supposed to fax a request to Dr. Flam's lab. When I arrived at Dr Flam's lab this morning to get my blood drawn, nobody had the request. They drew the blood  and did the studies in any event.  I requested that the report be faxed it to Dr. Felix's office. When I arrived for my appointment at 1:45 PM, of course, the results which take about 5 min. to obtain, were unavailable. I also learned from Dr. Felix that he had to read the path report on my blog. It was never sent to him from the hospital. Chalk one up for the universal medical record.
When the result was finally available, it turns out that my hemoglobin was 11.5 g. This is a substantial improvement from 8 g when I left the hospital.
All of the incisions on my abdominal wall are healing well. There are no stitches to remove, and I will be able to finally wash my abdomen with soap. Of interest is that although the pathology report suggested the tumor reached the serosa  (outer lining) of the small bowel, Dr. Felix thinks that this is a result of the surgery. When the tumor is removed, it is actually placed within a plastic bag and then pulled through the incision. This trauma damaged the outer surface of the specimen, which showed no gross evidence of tumor infiltration at the time of surgery.
My apologies to Dr. Felix. I reported that the incision was about 6 cm in length. Actually, the measurement is 4.5 cm.
My next step will be to confer with Dr. Nghiem  and with Dr. Flam about chemotherapy. The more I read about it, the more terrified I become.
Here is a link to Cisplatin side effects

These are the less common Cisplatin side effects (occurring in 10-29%) for patients receiving Cisplatin:
Peripheral neuropathy: Although less common, a serious side effect of decreased sensation and paresthesia (numbness and tingling of the extremities) may be noted. Sensory loss, numbness and tingling, and difficulty in walking may last for at least as long as therapy is continued.  Neurologic effects may be irreversible.
High frequency hearing loss.  Ringing in the ears.
Loss of appetite
Taste changes, metallic taste
Increases in blood tests measuring liver function.  
Death from the therapy in about 2% of patients.

The following Cisplatin side effects are common (occurring in greater than 30%) for patients receiving Cisplatin:
Nausea and vomiting. Nausea may last up to 1 week after therapy. Anti-nausea medication is given before the infusion, and a prescription is also given for use after.
Kidney toxicity.  Effects on kidney function are dose related, observed 10-20 days after therapy, and are generally reversible.
Blood test abnormalities (low magnesium, low calcium, low potassium)
Low white blood cells (this may put you at increased risk for infection)
Low red blood cells (anemia)

This will be a major undertaking and I will have to balance the potential gain with the risks of spending my remaining days in misery.

I would be very much interested in hearing from people who have undergone the treatment as to in their personal experience, it was worthwhile.