Billy and the 4th

Who's coming for Billy's wedding/the 4th? I'll probably get the 4th off and I want to run the 10k.

shrinking nodes

Fantastic news. Chuck got the results of his most recent scan this morning and the lymph nodes have shrunk. Mary and Dad are going to look at the film this afternoon.

Carol

I met a CUP survivor!

I have a client who I just learned is a CUP survivor. He was originally diagnosed with prostate cancer, but it was later determined that this was not the primary source. The primary source of the cancer was never identified. The cancer had also spread to his kidneys, I believe. He was told it was terminal, and that he didn't have long to live.

He refused to accept this death sentence (he grew up in South Africa during apartheid, and decided that if he could survive that, he could survive this). He did some searching on the internet on his own, and located a promising clinical trial in Toronto. The trial was testing an anti-angiogenic as part of the chemo. He was able to participate (after having to sue his insurance company to get them to cover the non-experimental portions of the treatments), and has been cancer-free for 6 years.

'Miracles' do happen!

Lisa

Chuck doing well

Chuck is doing incredibly well. We had dinner with him last night and he seemed fine. He says he's tired, though. He drove straight home after the 6 hours of chemo arriving at 3:30AM. Mary was not happy. She wanted to have dinner first.

Has anyone talked to Chuck or Mary?

I haven't talked to Mom or Chuck since Saturday. They were planning to drive to Nashville on Sunday for the first round of treatment today. Has anyone talked to them?

Charles E. Ketner Family Pep Rally: The latest

Nashville Clinical Study

Finally, some encouraging news to share! Mom and Chuck just got back from Nashville at 4:30am this morning, after meeting with a couple of experts in the field of CUP. Bottom line - although there are no guarantees, and it certainly won't be the case for every patient, these physician's feel that CUP can be successfully treated and patients can become cancer-free! So much better than being told that you can't beat this thing or that there is no cure. These guys have been studying CUP for 30 years and are actively enrolling patients in a Phase II clinical trial, the details of which can be found at the attached link:

http://www.clinicaltrials.gov/ct/show/NCT00360360?order=4


Mary can better explain how she found these guys and how, at the same time, Grandpa and she found a very recently published book on the subject. As it turns out, each of the doctors that they met in Nashville wrote a chapter in the book! Things are starting to fall into place. That's all for now. I couldn't wait to share the news. Positive thinking, all the way baby!

Love, Tiff

The Tennessee Docs

I was going to let Tiff post something about Chuck's visit witht he docs in Tennessee because she actually talked to Mary, but I figured everyone would want to know the news, so I'll do my best. Chuck has been accepted into the clinical trial, and will begin in chemotherapy in a week or two. It is not a blind trial - all patients receive the new drugs being tested. He will be traveling to Nashville for treatments.

These docs seem very knowledgeable about treatment of CUP - leaders in the field. It also sounds as if they are quite a bit more positive about his prognosis than anyone else they've talked to. Thank God we found them!

If anyone has additional information, or corrections, please post. Mary and Chuck should be getting back to Rockford later today.

Love,
Lisa

update

Chuck had an appointment with Dr. Nora today. His lymph node was slightly larger. His CA19.9 is slightly higher. The other 2 nodes are the same. Chuck was disappointed. He's considering chemo.

A doctor at Sloan Kettering has responded to Mary's letter. Dr. Nora will be contacting him.

Sorry I don't have any more details.

Love, Carol

Poem

I came across this poem, and Mary suggested I share it with the group.

What Cancer Cannot Do

Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot erode faith.
It cannot destroy peace.
It cannot silence courage.
It cannot suppress memories
It cannot kill friendship
It cannot erode the spirit.
It cannot conquer the soul.

The latest

Chuck had an appointment with Dr. Nora today. Mary and Dad went with. There is no change in the CA19-9 blood test. One of the lymph nodes was slightly larger (2mm) and the rest were unchanged. Dr. Nora was 50-50 about doing nothing last visit. Now he's 51% for doing nothing. He will get checked again in 2 months.

Other news: RCC Club golf championship - Chuck came in 4th overall in a 3 way tie scratch. The 3 had a playoff which he didn't win. However, he won the Senior golf championship scratch and with handicap.

Good news!

The CAT scan showed no change in Chuck's enlarged lymph nodes (i.e, they aren't any bigger), and none of Chuck's other lymph nodes are showing any sign of abnormality.

Chuck also had a CA19-9 blood test, which is a tumor marker primarily for pancreatic cancer. It was slightly elevated. The other hospitals who have reviewed Chuck's information are of the opinion that the primary source is either pancreatic or lung cancer. However, there are still no tumors visible.

The plan is for Chuck to repeat the bloodwork, CAT scan, and chest x-ray in 7 weeks. In the meantime, Chuck seems to be keeping whatever it is from getting the upperhand!

Appointment with Dr. Nora

Mary and Chuck are meeting with Dr. Nora today at 2:30 pm. Mary said she will post a blog or call someone after the meeting with the results of the CAT scan.

In our thoughts

You'll be in our thoughts and prayers tomorrow, Papa Chuck. Here's hoping for a repeat performance of the last scan.

4th of July Pics

I have uploaded my pictures from the 4th of July on Flickr. You should be able to just click here to view and download/print.

If that doesn't work, you may have to create a flickr account by going here first.

Enjoy!

Tres Amigos - 1964

This was in June of 1964 packing the Corvair for the epic trip to California to spend a week with Phil Basile. Many enduring memories. "let's hike to the bottom", "watch out that bar will come crashing down on your head", cruisin Hollywood boulevard, swimming at Malibu, Disneyland, the ranch in New Mexico etc. etc.

Neil

The Four Musketeers

Chuck, Phil, Neil, and Hazen. From one of the fun get-togethers by the ever gracious hosts, the Tucks.

Whisper

Whisper is undergoing unplanned surgery as we speak. She has had a recurring UTI, and today, in an attempt to figure out what's going on, the vet x-rayed her and found several marble-sized kidney stones. T

he vet thinks we can still come to Rockford with her as planned, but because of her age, we're taking a wait and see approach. I don't want her to be stressed if she needs to be recuperating. The last time she had surgery, a few months ago, she was up and bouncing around in less than 24 hours, so we'll hope for a repeat performance.

Happy 4th of July

As we head into the 4th of July holiday weekend, I tried for a red-white-and-blue theme. This was the best I could find.

Lisa, Harry, & Chesa are due to arrive in Rockford on Saturday. The McGivern plans, as always, are still up in the air. Paul works Saturday, he's off Sunday, works Monday, he's off Tuesday, and works Wednesday. This doesn't bode well for a long weekend with the family. We'll try to visit on Sunday and Tuesday. We certainly don't want to miss Uncle Hazen's 60th birthday!

Love you all & see some of you soon!

P.S.
Jeanne - We still need to finish plans for Georgia. As it stands now, my dad is picking up Katie and JOHN on July 22. The rest of us are driving down for a visit the week of August 7. If you are in town and have room to take PJ & Michael, they would like to go earlier, but can't leave until after July 30.

no change in lymph nodes

The CT scan showed no change in the lymph nodes, and the PET scan showed no primary. Dr. Nora said the primary may be gone. He recommends another CT scan in a month and no treatment unless there's a change. Good news. Maybe it will stay in it's cage for 20 years.

Positive Vibes

Let's all send out positive vibes, say a prayer, cross your fingers, or whatever else you want to do to create good energy for Chuck.