CEA Tumor Marker

Note from Erin: I'm going back and posting from Dad's original emails, so you can catch up. The actual first date of this blog was in January 2015. Also, this particular short email may only have been sent to family members.

The following Progression about 2-4 weeks apart

High Numbers are bad, Low is good (Opposite of School Grades!)

924   February

152
64
22.5

And the latest on 5/23-----16.3

Normal is 2-5  so continues to move in the right direction
John E. Swank

John's Health Update 02/22/14

Note from Erin: I'm going back and posting from Dad's original emails, so you can catch up. The actual first date of this blog was in January 2015.

I am sending this email out to some that may not have gotten the previous email.

I was diagnosed about 10 days ago with colon cancer that has spread to my liver.

Any one who gets this is free to share it with others. I would rather people know straight up rather than try to get information from the rumor mill.

The Guy Version

Had port implanted by surgery on Wednesday. The surgery went well, however, horrible vomiting for 7-8 hrs. Almost kept me in the hospital.

Thursday I went into work before 8am, and saw several clients. I felt tolerably well.

First round of chemo yesterday. No problem

Visiting nurse came yesterday when we got home hooked me up to IV pump, which I keep on for 46 hours. Main side effect of chemo so far is extreme sensitivity to anything much colder than body temperature. Most noticeable on hands.

My mood was raised significantly this morning when I got an offer of $450 for a lightning rod point that I had listed on Ebay for $299.95. I thought my price was outrageously high. But I think it was hand made, and no one has seen one like it. And it is broken!!! If you want to see, it go to Ebay and search for “Lightning Rod Point Rare Folk Art.”

Thanks for the massive outpouring of support and offers of help. Joyce has the burden of doing so many things, and friends are helping her too.

The Gal Version

Wed Joyce and I both woke up early, decided to stay up. Shopped at Meijers on the way to the 6:30 appointment at Kettering to get the port installed. The port was installed by 9:30 am, and I was back in recovery room. Normally people are discharged within about an hour. However I started vomiting continuously until about 2:30. They seriously considering keeping me over night. They said if I would not vomit for 30 minutes they would send me home. I left the hospital about 4pm. I vomited almost the whole way home and some after I got home. I felt punky most of the evening.

I went to work on Thursday, and saw several clients. Felt tolerably well.

Friday I had a 12:30 pm appt. with Kettering Cancer Care (my oncologist's office)to start my chemo, round one . Everything went smoothly during the day. I expected to start feeling badly during it, but I left feeling about the same when I went in.

The main side effect that has kicked in is sensitivity to cold. It started immediately. I had been warned numerous times. It is worse than I thought. The main challenge is touching things with the hands. Also what you put in your mouth. I figured “cold” was fairly cold, like getting something from the freezer. Wrong. Anything that is less than about 80 degrees. Some things at room temperature are too cold. I had to heat up a fig bar to eat!! Washing hands is a pain.

The sensation is most pronounced on fingertips. It is like a hundred needles pricking you. And the sensation continues for quite a while after touching something too cold. I have taken to wearing gloves a lot. My body doesn't feel cold. Just things I touch or put in my mouth.

The visiting nurse arrived shortly after we got home yesterday from chemo. She hooked me up to a portable pump. I was expecting to have a fairly small compact pump, which I do. But there also is the IV pouch that needs to be carried around. So I got a 16” x 6” x 4” bag, big enough to work, but far from being convenient. That gives me 46 hours of 5-fu, a drug that they did not give me at the chemo center.

Today, I have felt tired or tire easily. I took a shower, which was nice, as I have not been able to do that since the port was installed. I have been warned side effects may be felt later. Obviously lowered immune function means a whole different way of living and being near other people.

John Swank

Update 02/13/2014 John Health Issues

Note from Erin: I'm going back and posting from Dad's original emails, so you can catch up. The actual first date of this blog was in January 2015.

It is amazing what 7 days brings. I learned on Wednesday, 02/05/14 that I had what looked like cancer on a CT scan that involved my secum(the area where the large and small intestine connect with the appendix nearby) and liver. Pet Scan, Liver biopsy and a colonscopy, plus bloodwork confirmed that. The cancer started in the secum and traveled to the liver. No other cancer was evident anywhere else in the body.

Joyce and I met today with Dr. Joseph Lavelle, the oncologist ,for the second time in a week. Spent three hours in his office.

The bottom line:

I will be getting a port installed under the skin (sort of like where a pace maker is installed) where they will do all the chemotherapy and take blood. No more painful sticks in the arm.

Chemotherapy will start next Friday, and will take about 3.5-4 hrs total time in the oncologist's office. Dr. Lavelle is part of Kettering Cancer Care Clinic. Chemotherapy will be every other Friday, for an indefinite length of time. 6 months sounds like a minimum.

Following each chemotherapy session, a home health nurse will arrive later in the day at our home to hook me up to a small pump that hangs at the waist. The nurse will return in 48 hours and unhook me from the pump.

Monitoring of effectiveness of the chemotherapy will be done by blood work taken prior to the chemotherapy, and then CT scans taken about every three months.

There are, of course, no guarantees and adjustments are likely to be made along the way.

We are so thankful that everything has moved at breakneck speed, and feel relieved that we now have a plan. Our friends have been generous in offering help. We have taken some up on that already, we may need others of you later. Thanks to all for your prayers, concerns and support.

John and Joyce

This ends the “Guy Version” as our family calls it when you just get to the point of what you need to know. The longer detailed version we call the “gal version.” For those who want more details, keep reading. Otherwise stop now and you have the guy version.

The gal version

The Cancer: It is an Adenocarcinoma. The source is the secum area, and traveled by blood to the liver. There are also some lymph nodes affected around the secum area. There are “several lesions” in the liver. Surgery is not a reasonable option as one can never get it all. The goal is to shrink it.

What meds will I be on:

It is called FUFOX which is a combination of the following three:

5-FU Fluorouracil solution for injection. Trade name: Adrucil

Oxaliplatin solution Trade Name: Eloxatin Side effect- can't tolerate anything cold at least for several days after chemotherapy. Need to wear gloves to get items from freezer, protect from breathing cold air, drinks must be room temp.

Leucovorin Calcium Solution (a vitamin supplement- high levels of folic acid) which helps the other two work better

In .addition:

Bevacizumab Solution Trade Name: Avastin This is a highly targeted drug that cuts off the blood supply to the bloodthirsty cancer cells. Fewer side effects since so highly targeted.

We have many, many instructions and warnings.

There are a list of symptoms that are life threatening, and you need to call the doctor on call immediately. For example, temperature above 100.0 degrees.

We were give most of three hours of explanation, instruction and answering questions at Dr. Lavelle's office. His nurse, Milissa, is a wonderful person to work with. Dr. Lavelle calls her his bulldog as she gets things done.

1. Milissa grew up in Piqua and is the neice of the late Joe Reardon, a very well known and respected civic leader in Troy. Dr. Lavelle grew up in Troy, lives about 3 miles east of us on Casstown Sidney Road. His father was a veterinarian in Troy, with his practice now run by grandson, across from the fairgrounds. Amazing Miami County connections with the team.

Learned all kinds of interesting precautions. Obviously immune function compromised. Have to close the lid on the toilet and flush two times for several days after chemotherapy. Have to use children's toothpaste as need very mild. No dental procedures, etc. No raw fruits and vegetables, esp those with a skin that can have dirt. (apples, pears). Bananas are ok, canned and frozen are ok.

We are going to meet with a dietician fairly soon, as there are so many things to keep track of, esp while being on coumadin.-slower acting blood thinner.

I am back on Lovenox self injections, which are a short acting blood thinner. Here I had thought I had learned a skill and not use it again. Wrong! I will be giving myself injections twice a day for several more days, as had to go off coumadin for liver biopsy and colonoscopy this week. 

This nothing that anyone wants to happen, but it is so helpful we have the support of so many people, and that we have a fairly clear direction, and feel great about the team we are working with.  John and Joyce

The first health update

Note from Erin: I'm going back and posting from Dad's original emails, so you can catch up. The actual first date of this blog was in January 2015.

To: Friends and Family

From: John Swank

02/06/2014

For those who get this email, some may not know at all, some may be aware of some of what has been going on with me. 

If there are relatives or friends who are not included in the address list, please help out and send this on to others who may be interested.  

It has been a hell of a roller coast ride since mid January. So I will give you run down by a time line.

January 1 brought in New Year by having “Pink Eye.”

January 10 more or less started getting cramps in my left leg. Thought it was due to the very cold weather, so kept stretching it to exercise it. Kept getting worse.

January 17-Celebrated my 67 birthday. Went to Jazz Central night before with some cousins. Good thing I didn't dance much. 

January 20 went to ER when pain would not let up. Diagnosed with a 2 foot long blood clot  (Deep Vein Trombosis  DVT) in my left leg. Hospitalized at Upper Valley Medical Center (UVMC) Troy.

January 22 discharged from hospital. Felt good for several days. Learned the joy of giving self injections of Lovenox in stomach (pinch an inch and inject) for 5 days. Actually fairly little pain in my leg after discharged.

January 29 back to ER as pain had escalated to level prior to hospitalization. I was worried that a further blood clot had developed. Results nothing different . Sent me home.

January 31. Saw my PCP, Dr. Spagnola. Left leg still swollen. I had worked in his office when I first came to Troy, so I know him well. He greeted me with the blunt assessment- “We have to check for cancer. “ I have learned that if you have unexplained blood clots there is a very high chance that there is underlying cancer, or something else major going on. He ordered several CT scans (Chest, and Abdomen from stomach to pelvis) and ultrasound of prostate to be done at Kettering Medical Center. V I was a bit frustrated with UVMC and started looking at going to a different hospital. .

February 3- starting looking for different solutions as leg more swollen. Considered going to Cleveland Clinic. As swelling had not gone down, I wanted an appointment with a specialist who might look at getting the clot removed as it was so massive. (Many people think Coumedin/warfarin disolves blood clots. It only keeps the clots from moving to lung, etc by making blood thinner. It takes months for the clot to be reabsorbed back into the body.)

Had a friend, Matt,with a PHD in Pharmacology (PharmD) recommend his friend, Dr. Lavelle. He is a hemotologist/oncologist. Started trying to make appointment to get in.

February 4- Did above tests at Kettering Medical Center. Dr. sent med records to Dr. Lavelle.

February 5- Dr. Spagnola called me with results of CT scans, even though his office was closed because of the snow. Stated that there were several areas of concern around the appendix and there was a lesion on the liver. Wanted me to see an oncologist. Contacted my friend again, who had said if not able to get in quickly, he would make it happen. Called him in the afternoon, and in about a half an hour he had the personal phone number of Dr. Lavelle's nurse, and the promise that Dr. Lavelle “would work me in.” My physician had said that it is very hard to get an appointment quickly with Dr. Lavelle.

February 6 (today) Called Dr. Lavelle's nurse at 830 this morning, she said she would check and get back with me in a couple of hours. She called me back at about 11am, and wanted to know if I could be there by 2:15pm.

Arrived early, spent a total of 3 hours in the office. Everyone extremely attentive, and explained things in detail. Dr. Lavelle explained that he needed to know more to treat, so ordered lab work (taken on the spot), and arranged the following before we left:

Tomorrow (February 7) PET scan at 9:15 am to identify any cancer activity in the whole body. Medicare does not like to authorize Pet Scans (My sister Becky said it took them quite a while to get her husband Tom's authorized through Medicare. Dr Lavelle's office had it authorized while we were still there.

Sunday-Feb 9th- start 24 hour urine collection

Monday-Feb 10: Liver biopsy

Tuesday Feb 11: Meet with doctor who will do colonoscopy

Wednesday Feb 12: Colonoscopy

Thursday Feb 13: Results and recommendations

It has not been an education I wanted, but I am so pleased that everything is moving along at near breakneck speed. (I have talked to people who had to wait 4-6 weeks to get into an oncologist.)

We have wonderful support from friends. Joyce has been a trouper. I feel that she has to do so much for me, as my stamina and energy are low. Thanks to all for well wishes. support--and food.  

I am aware that this is the first that some have heard, so now that have more information, thought we would broaden the group to whom this is sent.

John