Memories of Jason Freiboth: June 2010 Upddate

Thursday, June 10, 2010

June 2010 Upddate

I don't know how many people have still been checking in, but if you have, sorry for such a gap in updating this site.

There has been quite a bit going on since the last update. December of last year included a clinical trial drug called OX40. The treatment involved a series of IV drips with the experimental drug over a period of about 2 months. At the end of the treatment, an MRI and CT scan were done to see if there had been any changes in the melanoma in my body. Those results showed no new growths and some shrinkage in existing growths. That was pretty good news!

Up until February I really didn't have much going on other than routine scans. About mid February I started to have some odd feelings in my legs and back. A CT scan showed that there were some growths on my lower spine that was affecting my ability to walk steadily. It also showed a growth on my left kidney and another on my right ureter. 5 Doses of radiation were able to take care of the spots on my spine and walking is fine for now. The blockage on the ureter was causing some pretty good back pain that was relieved with some pretty heavy pain medication. The urologists also attempted to place a stint in my kidney to bypass the blocked ureter twice with no success. As a result, a nafrostamy tube was placed in my kidney along with a collection bag to collect urine from that kidney. After having the tube and bag for almost 2 months, they were finally able to place a stint internally and remove the tube and bag. That was quite a relief to get the tube out since I was only able to take sponge baths with the tube in place! During that same time frame, I was taking a chemotherapy pill called Temador. It really had no side effects and after taking it for 3 weeks showed now improvement in any of the affected areas so that drug was stopped.

Most recently, I have started another clinical trial drug called ipilimamamab (ippi for short). It is another immune therapy that is given by IV. My first infusion was this last Friday, 4th of June. I will be receiving treatment every three weeks for three more times. After those treatments there will be scans done to determine what effect the drugs have had. We are obviously hoping for some good results from this treatment as it has some pretty good results in prior trials. We will try to keep up a little better with upcoming treatments to keep you all posted. Sorry again it has been so long & hopefully we will keep you all updated a bit better in the future!

Jason

3 comments:

Sandy Dirks said...: I've been hearing good things about the ippi treatment. We continue to keep you and your family in our prayers, and are praying that your treatment will be successful!

Love & Blessings to you,
Sandy & Lonny Dirks; June 11, 2010 10:25 AM
Johnsons said...: Hi Jason

Thank you so very much for your most recent update. I have been thinking about you and your family. I just wanted to drop you a quick note to let you know you and your family are in our thoughts and prayers. Keep up the fight!!! Your strength and courage are truly an inspiration. Sending positive thoughts and energy your way each day.

Please take care!

Jennifer Putzi Johnson; June 21, 2010 8:05 PM
Pam Nimrick said...: It is so good to get an update! We pray that the ippi treatment gives you the results you are looking for. We continue to keep your family and you in our prayers. Keep up your fighting spirit. You all have amazing tenacity and are a picture of how you have cancer, but cancer doesn't have you!

Blessings,
The Nimricks; June 28, 2010 10:11 AM

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Background on Jason's Battle with Cancer

Skin cancer has taken a toll on longtime Bend park district sports program do-it-all Jason Freiboth, but with support from myriad sources he hopes to beat the potentially deadly disease. If you or your children have played organized recreational sports in these parts over the past dozen years, there’s a good chance you’ve come across Jason Freiboth (it's pronounced FRY-both). An employee of the Bend Metro Park and Recreation District since 1996, Freiboth (now 37) has had a hand in just about every sports program the district offers.

It began in early 2002 as a tiny white spot on his lower lip. “Like a flake of dry, chapped skin,” Freiboth describes it. “It would come and go, but it wouldn’t go away.” So he had it checked, and the result was not good: He tested positive for skin cancer — specifically, squamous cell carcinoma, or SCC. A procedure to remove the cancerous tissue was successful, and Freiboth counted his blessings and went on with his life. “They (doctors) told me it looked like they got everything and that the margins were clear (no sign that the cancer had spread),” he says. “I was good to go.”

That he was … for the next five years. Cancer is random. It is as unpredictable as it is indiscriminate. And while anyone who has developed skin cancer is at increased risk of encountering the disease again, Freiboth did not suspect cancer when, in spring 2006, he noticed swelling on the right side of his neck. It turned out to be cancer — the SCC was manifest in Freiboth’s lymphatic system. The unwelcome development meant another round of surgery, this time to remove the cancerous lymph node and a number of the surrounding nodes. That operation, too, was declared a success. After Freiboth made a quick and encouraging recovery from the neck operation. “It looked like I was cancer-free,” he recalls, “and in the clear.”

He had heard that before, of course, only to be disappointed. But that made him no better prepared when a checkup last fall revealed another little spot on his lip. Or when another biopsy determined that the “spot” represented a different form of skin cancer: melanoma. While not as common as squamous cell carcinoma, melanoma is even more dangerous, causing more deaths (an estimated 8,000 in the U.S. in 2007) than any other type of skin cancer. Like SCC, melanoma can spread to other parts of the body if not treated early, so Freiboth went back under the surgeon’s knife. First, he underwent a “lip shave.” “They peeled all the skin off my bottom lip and pulled the skin from the inside of my mouth to make a new lip,” Freiboth explains. A few weeks later, after it was discovered that the lip shave had not removed all of the cancer, Freiboth underwent another procedure, during which a half-inch wedge of his lip was removed to assure that the diseased tissue was gone. And, he says, it appeared once again that he was good to go.

But as a precaution, his doctor wanted to set him up for radiation treatment. Freiboth was also prescribed a positron emission tomography exam, or PET scan, which allowed his radiation oncologist to perform a full-body examination for cancer. The scan was performed in early March — and Freiboth’s oncologist got back to him with some troubling news. “She said, ‘We found a suspicious spot we need to look at,’” he recounts. “I asked her where. And she said, ‘On your brain.’ Further testing determined that the spot the oncologist had detected was a tumor. “About the size of a walnut,” says Freiboth, “on the back of my brain.” On March 19, he underwent surgery to remove the tumor — most of it, anyway. And on June 9, he completed a series of hard-hitting, “whole brain” radiation sessions in an attempt to shrink what remained of the tumor. Dr. Linyee Chang, a radiation oncologist with the Cancer Treatment Center at St. Charles Bend, says Freiboth’s prognosis depends on how he responds to treatment. “His youth and his excellent health status are in his favor,” she observes. “He can tolerate aggressive treatment. “And,” Chang says, “he has a very positive attitude, and a strong support system.”

Freiboth is thankful to be reasonably well insured. But insurance doesn’t help with travel expenses, and since his cancer returned in 2006 Freiboth has made numerous trips to Portland to see doctors and specialists. He also worries that his ordeal could result in substantial time away from work and a possible long-term loss of income. On top of that, his is not the family’s only serious health issue: Seven-year-old son Max was born with hemiplegic cerebral palsy, which requires considerable therapy and treatment. That means even more trips to Portland, for visits to a neurologist and, every few months, to the Shriners Hospital for Children. As for the physical toll the cancer is taking, Freiboth has his good days and his bad days. Work serves as a refuge of sorts for Freiboth, allowing him to turn his attention away from his frustrating and frightening fight against a dreaded, life-threatening disease.

The latest radiation sessions have provided hope. And he remains hopeful as he braces for upcoming stereotactic radiation, which he describes as “a one-shot treatment” to attack whatever remains of his tumor. But he has been let down often enough to be guarded with his optimism. Same for his wife. “I’ll believe it (the cancer) is gone,” says Candy Freiboth, “when I see the MRI (magnetic resonance imaging) that says it’s clear.” Jason has “metastatic” melanoma, which means the disease has entered his bloodstream. That, Dr. Chang explains, is how the melanoma spread to Freiboth’s brain. Only time will tell if the radiation treatment will stem the spread. “Melanoma’s a strange thing,” Freiboth says. He knows that if it continues to advance, his outlook is grim. “I could have six months to live,” he says matter-of-factly. “I don’t think they really know.” Since he was first diagnosed with skin cancer, Freiboth has experienced a range of emotions: anger, sadness, fear. And, of course, he wondered, “Why me?” Through it all, though, he has been buoyed not only by his family but by an extended family of co-workers and friends. “We’re hoping that it’s a short-term deal for Jason and that he can fight through this,” says Eric Carmichael, one of the basketball players at the Athletic Club of Bend, where Jason has ref'd for years. “We’re in his corner … we’re praying for him. “The world’s a better place with guys like him in it.”

Memories of Jason Freiboth

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Thursday, June 10, 2010

June 2010 Upddate

3 comments:

Slideshow of Jason & Family

Slideshow of Pasta Feed

Background on Jason's Battle with Cancer