After this treatment ordeal Timm appeared to remain cancer-free for nearly 5 years: All CT scans came back clear, showing no evidence of cancer. In 2016, at what Timm expected to be his final visit with the oncologist, where he would receive a clean bill of health—what Timm calls his “get out of jail free card”—the doctor instead reported that two “spots” had been found. Six months, several CTs, a biopsy, and a PET scan later, one of the spots was found to be sarcoma.
The October 2016 surgery in Denver to remove this small tumor was expected to be straightforward and curative. Instead, we experienced a month-long surgical ordeal. The surgery required much larger margins than expected, taking additional sections of intestine, as well as the tip of Timm's spleen. All the tissue samples removed and tested came back as sarcoma, even the tissue that the surgeon thought looked normal. This despite years of clear CTs, and PET scan that showed no evidence that the cancer had spread beyond the small tumor. In addition, because of extensive radiation damage from Timm's 2011 treatment, the surgeon had trouble working with the many adhesions he encountered throughout Timm’s abdomen. After being sent home about a week after the initial October 7 surgery, and spending nearly a week recovering at home, Timm ended up in our local emergency room with a leaking incision. He was sent back to Denver where he eventually required additional surgery to repair the leaking bowel. Because of all the swelling and inflammation in the bowel, the surgeon had to give Timm a colostomy, and for the time being at least, Timm would have to live with a colostomy bag.
As a result of this monthlong ordeal, which took up most of October and extended into November, Timm lost over 20 pounds. He had surgical wounds that took a great deal of time to heal. Over the months of November and December he slowly regained weight and strength, thanks to the help of friends and family who came out to cook and help. During this time we visited the oncologist to formulate a plan of treatment.
The sarcoma was high grade, and could not be treated with further surgery, nor was there any treatment deemed curative. However, during the time that Timm was in the hospital, the FDA had approved a new treatment for soft-tissue sarcoma, the only drug in years to significantly improve what they call “survivability” in sarcoma patients. The drug Lartruvo, which is administered in combination with the chemo drug Doxorubicin, targets the growth factor in cancer cells (called PDGFR). Timm started this treatment in January 2017. Treatment was working until early 2018, when a new tumor was found near Timm’s heart. This tumor grew over 300% over the next a couple months, so Timm's oncologist determined that the Lartruvo was no longer effective, and referred him to a clinical drug trial at Sarah Cannon Research Institute in Denver.
In March 2018 Timm started participating in a Phase One clinical trial of a targeted therapy that so far seems to be working. Timm has treatment 3 weeks out of every 4. He drives up to Denver Wednesday afternoons and is put up in a hotel by the trial sponsors. Then early the next morning he goes to the clinic for treatment, and drives home Thursday afternoon or evening. Every 8 weeks he gets a PET scan to determine if the tumor has grown, stayed the same size, or shrunk. So far each time the tumor has been “stable,” meaning it has fairly much stayed the same. (Keep in mind that the same tumor grew 300% in less than two months while Timm was on Lartruvo.) If at any point the tumor grows 20% or more, Timm will become ineligible to continue that trial, and will have to get in line for another one.
We suspended our 2017 Go-Fund-Me campaign after receiving unexpected income that helped us cover Timm's medical expenses for over a year. That income was depleted several months ago and we are currently running short every month with many new expenses since the beginning of 2018, and we now find ourselves in need. We have cut back non-essential expenses and have tapped out our savings. Each year Timm is responsible for $6,500 dollars for in-network insurance deductibles, which is typically exceeded before the end of that first month, annually, for “allowable” expenses. Also, there are many new expenses not covered by insurance or by the drug-trial sponsors. (The trial, for example, does not cover 39 weeks a year for transportation/food expenses to attend Sarah Cannon Research Institute requiring overnight stays in Denver.) Currently, our largest single balance is $7,000 out-of-pocket for Lartruvo treatment from January 2017 to March 2018, on which we make monthly payments. We have also had a series of significant, unplanned non-medical expenses this year in addition to Timm's medical expenses. But despite our financial trials we have much to be thankful for:
A major milestone is that we just made our last monthly payment for the two surgeries performed in 2016. That feels very good! And of greater significance, Timm says he feels he “has been brought back from the dead,” which was on the near horizon prior to the miracle results of this current drug trial, making the tumor near his heart “stable.” He has also gained back 7 of the 12 pounds he had lost last winter, and is very grateful for the hope these significant changes have brought. That said, we know with certainty that none of this could have happened without external intervention, and we give thanks for every act of kindness offered to us by our friends, family, and those devoted caregivers within the medical community. We thank God for this deliverance, and for the privilege of participating in the drug trial itself.
We are also very aware that we could not have survived this past 7½ years without your help: the prayers, meals, rides, encouragement, treats, hugs, laughter, financial gifts, and love you have provided. You have been vessels of compassion. We give thanks for these blessings, and for you! We thank you even now for any help you are able to offer in our current need. One caveat: If you are also struggling with a financial burden, this fund is not for you. But we would very much appreciate you lifting us up in your prayers instead.
Blessings to each of you who provide for us in ways we cannot! It means more than we can convey. Thank you!
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