CT Scan from March 23rd

Liana took Earl to UT Hospital yesterday to get a copy of the March 23rd CT scan. It's on CD and on it's way to Philly. Dr Watson should have it today.

She then took Earl on the Dr. Chobanian's office for bloodwork. The results of the CA19-9 won't be ready until next Tuesday. The results are to be faxed to Dr. Watson on May 1st.

Once we find out if referrals are needed, we will be scheduling appointments with oncology and radiation doctors here as soon as possible.

Flax Oil - Nature's perfect food

Barleans Flax Oil

(All links on this post are listed on the right side of the main page)

As a cancer survivor, I use Barleans flax oil and have ordered from them in Washington state. I also buy it in Knoxville at Natural & Organic near Michael's restaurant on Kingston Pike. Buy only if refrigerated. Never heat or cook with it. The high lignan oil is best for cancer treatment. Always shake well before use. (If you consider using the capsules, please read the Beckwith information first. Mr. Beckwith does not recommend the capsules for cancer treatment. See link below.)

Flax oil must be mixed with cottage cheese to break down the oil, so it can be utilized by the body. I add one or two TBSP of oil to 1/4 to 1/2 cup of cottage. Stir well. Wait 10-15 minutes to allow the oil to break down, then add fruit or veggies of choice and enjoy. I often mix mine and take to work for mid-morning snack.

Person with cancer should consume about six TBSP per day broken up into at least three batches over the day. If difficulties tolerating the oil are encountered, back off on amount and gradually increase back up to six TBSP per day.

Flax oil is not just for cancer patients. It is the perfect food for everyone from 9 to 99 yrs old. It is reported to help so many ailments. Everyone can benefit.

Earl has started eating the cottage cheese and flax oil each day. We hope it will help him better tolerate the chemo and radiation. Help his body recover faster. Maybe even cure his cancer!?!?

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Clifford Beckwith, from Wartburg, TN, credits flax oil with curing his cancer after doctors had given up on him. Beckwith and Flax Oil

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My brother sent me this link. I've been reading it and found Flax oil is included here: Cancer Fighting Strategies

Dr. James C Watson - Fox Chase Cancer Center

FCCC is a member of
National Comprehensive Cancer Network:
http://www.nccn.org/

We were told FCCC is best for pancreatic cancer
(M D Anderson in Houston is #2)

Fox Chase Cancer Center, Philadelphia, PA:
http://www.nccn.org/members/profiles/fccc.asp

Profile on Earl's Philadelphia Doctor:

http://www.fccc.edu/physician_directory/surgical/watson.html

Our day in Philly

Thank you, Pat, for taking time to add yesterday's update. Good job!

A very long, tiring day.... but a good day. Earl was so very tired when we finally got back home around 9:15 last night. Barely made it into the house.

Dr Watson was very informative. Using a large wall chart, he explained EVERYTHING. We now have a very clear understanding of the whys.... mainly why it may be inoperable. At least, now we will understand what is going on and why things may or may not go well down the road.

The critical thing right now is for Dr Watson to see the CT scan (with contrast) from 3/23. IF the tumor is wrapped around the blood supply that runs thru the head of the pancreas..... then there are major problems. The CT scan done at St. Mary's was done without contrast, so does not show the detail needed.

Another problem is that the stents used at St. Mary's are metal mesh. They cannot be removed and will be a problem during surgery and with them creating a raw area for Earl's body to deal with. There are plastic stents now, similar to drinking straws, that can be removed.

Some stats stated were that out of 15 patients with this cancer, only six will be candidates for surgery. Out of six, four will be resectioned and after a couple of years, only four will have survived.

We're very glad we made this trip. We learned a lot. We still have hope that Earl may be a candidate for surgery at some point.

If you've never traveled thru Philly International Airport.... the place is HUGE. They actually had several large buses, like K-Trans, that were transporting people from one terminal to another. This was after we cleared security.

By the way, you might have known :-), I did take a few photos of the hospital complex and will add a few....

Oh yes, about to forget... Dr. Watson said all the chemo for this cancer is made in NJ, so it makes no difference where it is administered. So chemo and radiation can be done here in Knoxville, which will clear up some of our insurance problems!!

Thank you for all your prayers.
Lillian

Meeting with doctor at Fox Chase in Philadelphia PA

Wednesday 4/25/07
I spoke with Lillian about 2:00 p.m., this is some of what she had to say.

After meeting with the doctor at Fox Chase, they have learned that before a definite decision concerning surgery can be made, the doctor must see the CT scan from UT done on Mar 23rd. This was not in the things sent to him and they did not know it wasn't on the CD they took up. This will show him more clearly how the tumor may be positioned and where all it may be attached. Also must do blood work again to see if Earl's count of 572, which is too high, has decreased since the stents were placed and the bile removed. The doctor says it needs to be down in the 200 count to aid in the decision of surgery. The tumor is about 5 cm which is about 2 inches, so this would make surgery difficult. Chemo and radiation may be done first to see if they can shrink it to make it much easier to do surgery.

So to sum it up. Earl must return to Knoxville, get CT scan from UT and send using over-night delivery, get new blood count done by Dr Chobanian and fax results as fast as possible to doctor at Fox Chase. After the doctor has seen scan and gets blood count, he may make a decision at that point and if Earl is a candidate for surgery, it may be scheduled as early as next week. At the same time, he may also make a decision that shrinking the tumor may be a better route to take and order the chemo and radiation first and then surgery. It will determine entirely on what the doctor sees from this CT scan and blood count.

The doctor was honest enough to let them know that things were pretty bad. The tumor must be removed if survival is to occur. He gave him a prescription for enzymes to assist in what the pancrease is supposed to be doing. This would also aid in stopping Earl from losing weight. Says it will also aid in stopping Earl's acid indigestion and nausea that he is still experiencing.

Please keep those prayers flowing. Miracles happen, faith is a healer. Friends and family keep us strong!
This post was issued by Lil's sister, Pat Carver

How to leave a comment

This blog thing is new to me, too. My dear brother and his wife told me about this FREE blog this week.

If you would like to leave a comment for us, click on the "comment" link under any post. We post, you comment. Simple enough, I hope! :-)

Under "Select an identity"... if you don't have a Google account, you can click on "Other" and a box opens up for you to type in your name, if you choose to do so.

We can add photos and other things, too. I'll figure that out as I have time!

Happy commenting!

Lillian

Change in travel plans

I sit here with steam coming out my ears! Our, so called, client/friend had "something come up" and is not able to fly us to Philly! Suffice to say, we knew from past experience..... but had hoped this time he would prove us wrong!

We were able to book seats on 7:05 a.m. flight with US Air, so we ARE off to Philly. Should have plenty of time to get to the hospital by 10:15 a.m.

Have return flight tomorrow evening arriving here around 8:45 p.m. This is a direct flight to/from, so no stops along the way.

Praying we come back with some better news!

Lillian

Appointment time change 4/25/07

Fox Chase called yesterday and changed Earl's appt. time to 11:15 a.m. tomorrow, so we will have to be up there at 10:15 a.m.

Have made contact with pilot/owner of plane about this change. We may now be flying up later today or VERY early in the morning.

Our Cigna case worker in Pittsburg, Pa. returned our call yesterday afternoon. She has asked for some additional information and wants to know what we find out tomorrow. She is a cancer survivor herself and told Earl she was glad we were getting a second opinion. We are to report back to her on Thursday. At least she didn't say "No"!

Blog note

The first posting below is a compilation of emails, notes, etc. that covers the last month or so. You may have already read most of it thru emails. I have copied and pasted everything to this blog in an effort to let our family and friends know what is going on with us.

Thank you for your prayers and the love that has been shown in so many ways. At this time, every prayer, every word of encouragement, the smiles, even tears shared... all are precious. Everything lets us know we are not alone in this. Thank you!

Note that comments can be left for Earl to read. Just click on the comment link below each posting. You can also email a posting to others by clicking on the email envelope.

We plan to fly to Philadelphia Wed. morning and return Wed evening or Thurs morning. Since we are not flying commercial, we can be somewhat flexible as to when we travel. (We are so grateful that one of Earl's clients is providing transportation by flying us up in his plane. Thank you RD and JE)

Earl: Cancer of Pancreas, diagnosed 4/6/07

(You might want to read this post from the bottom up to see order things occurred.)

4/22/07:
Dr. appt in Philly had to be rescheduled due to bad storms along East coast. Moved up one week to April 25^th @ 1:00 p.m.

Earl still tires easily and is sleeping a lot. Being in the hospital for nine days and being put to sleep three days in a row was very hard on him.

4/13/07:

Earl has appt with Dr at Fox Chase in Philly next Wed. @ 1 p.m.

Still trying to get insurance authorization.

Making arrangements for travel and lodging. Lot to do!!

4/10/07:

We received call from Fox Chase Monday morning, 4/9/07. Several calls back and forth. Confirming insurance. Faxing records to them.

4/9/07:

Scan showed stints were still in place. Tube removed. Earl was discharged from the hospital around 1:30 p.m. He was so weak by the time he got home. Used wheelchair to get him into the house. Asked for walker, which he used thru out the day. Fever 100.2 ..... He slept most of the afternoon.

4/7/07:

Well.... I have delayed posting this because the news is very bad and it's hard to write. We were told late Fri night that Earl does have pancreatic cancer. Adenocarcinoma, inoperable, at least here in Knoxville. I just hate so much having to relay this news. Please keep us in your prayers as we research our options and try to make decisions about his care and treatment.

He has been advised by his Gastro specialist and oncologist to go elsewhere for treatment. Apparently Knoxville is not the place to expect survival with this cancer. Depending on how tumor might respond to treatment here, he might have one to two years.

The two Drs. agree that Fox Chase (Univ of Pa) in Philadelphia is the #1 place to seek treatment for this cancer. Here is link for FC. http://www.nccn.org/members/profiles/fccc.asp

We have been unable to make contact with the phone numbers on the website over the weekend, but have left msg and will try again Mon a.m.

St. Mary's is copying all his records and transferring CT scans, ultrasounds, etc. to CD-ROM for us to send/take to FC. Pathology slides also provided.

If you know anything about Fox Chase or have any experiences with pancreatic cancer that might help us, please let us know. We welcome any help.

I guess our biggest concern is going to be if our CIGNA insurance will help much. I'm guessing FC will be "out of network" and benefits will not be near as much as local "in-network" doctors/treatment. But, we've been strongly advised to more or less "get out of town". So, that is exactly what he plans/wants to do.

Please pray that we will be able to work out all the details and that FC will accept him, etc. Finances will be another concern. We just spent 12 years paying off my doctors/treatment bills following colon cancer. We had no insurance at that time. We have no savings now due to this. We just pray we can work things out to get treatment for him and worry about the $$ side of it later.

Earl still has the drain tube in his right side. Dr. is discharging him Monday. Don't know yet if it will be with or without the drain.

At this moment, I feel very helpless and maybe even scared... not knowing what to do or if things will work out. But, I trust that things will fall into place and we'll get him to wherever he needs to be.

I must end this and take him a few things he needs. I thank each of you for your concern and prayers. Those of you who visited have been a blessing to Earl. Thank you, too, for his cards and phone calls. And all the emails have been wonderful! I print and take them each day.

4/6/07 a.m.

Using a CT guided needle thru the stomach, Dr Johnson got good biopsy tissue yesterday. Hope to have results this afternoon or tomorrow a.m. when his Dr. comes in.

Drain to outside is working well. He gets real food today for first time since entering hosp on Sunday afternoon. Has been on clear liquids all week! Has not liked that at all!! He did get a bowl of tomato soup yesterday. Must have tasted good.... it disappeared in a hurry!

He was still yellow yesterday, but don't think he would glow in the dark now! He has been unbelievably yellow since Mar. 19th. His eyes are so yellow, we've been calling him our alien lizard!

Removed his IV bag/pole this a.m. He thinks they might remove the needle from back of his hand, too. At least, he hopes they will.

Thank you so much for your prayers. We appreciate your prayers and emails of encouragement. I have been printing them for Earl. They really mean a lot. I'm just sorry I don't have time to answer each and every one.

I'm taking a little time to take care of a few things at home this morning. Been at the hosp all week. Will go back after lunch.

Will update again when we get lab results.

4/4/07 late p.m.:

Today was better in that Dr Miller was able to put in the stints (2) and placed an external drain tube, which is working well. They had him from 1:00 p.m. until after 4:30. Guess we got back to the room right at 5 p.m. He had to lay on the drain side for four hours. 8 p.m. before he could move. This to ensure the liver did not bleed where the tube was inserted.

The not so good is that the results of the biopsy they took yesterday are inconclusive. We/they still don't know IF it's cancer. I think they "suspect", but don't have clear evidence. BUT.... maybe there is a glimmer of hope.

An oncologist and a surgeon came by tonight. One @ 8:15 and surgeon about 10:15. They seem to agree that another biopsy should be done to confirm. So.... a CT guided probe or whatever they call it, will be done either Thurs or Friday. May depend on how the bile is looking. It is very dark now and should be a light yellow before the drain will be removed. Not that they said they would wait for that to do the biopsy.

So, we're in that holding pattern again and he remains in the hospital.

We appreciate your emails and prayers. They are such a comfort. I'm printing the emails for Earl.

4/3/07:

Today wasn't a very good day.

Dr Miller was not able to place the stent or open up the pancreas to drain. It is totally blocked by a tumor at the "head" of the pancreas. Did take tissue for biopsy. Results tomorrow. Dr. said sometimes he can punch or push thru a mass and place the stint, but was not able to do that with this one.

Another Dr. will attempt to go in thru Earl's side tomorrow around 1:00 pm. Was told they would take him down early. Maybe 11:00 or so. Plan is to go in thru his side into the liver, then down the duct to the pancreas coming in from the other side of the tumor. Then attempt to place the stint or put in an external drainage tube to try to drain some of the bile and relieve some of the pressure. If the drain works, it will be changed to an internal drain in a few days.

Assume they will do this regardless of biopsy results.

4/1/07:

Matt and Liana say Earl is dehydrated and insist we take him to the ER. We decide to go to St. Mary's because of the ERCP procedure scheduled there on 4/3/07. Got to ER around 1:30 p.m. ER did ultrasound that shows the pancreas is completely blocked. Also drew blood for lab and did chest X-rays. Admitted him to hospital. He was put in a room about 5 p.m.

3/28/07:

Consultation with Dr. C got copy of CT scan from UT. Has scheduled ERCP biopsy and stint for Tues. 4/3/07. (Dr. Miller)

3/20/07:

Dr. took blood for lab and scheduled a CT Scan at UT for Friday 3/23/07. Also sending him for colonoscopy.

3/19/07

Liana noticed Earl was very yellow, even his eyes.

3/15/07:

Earl called and made an appt to see Primary Dr. next Tues, 3/20/07.

Acid indigestion getting so bad he can not lay down to sleep at night. Throwing up after some meals and sometimes during the night between 3 – 6 a.m.