NED (No Evidence of Disease)
This is a picture of a true winner. It’s easy to win at sports, games, etc.
Yours was a tough win. Congratulations my friend. And if you knew me,
you would know I don’t impress easily. I assure you. You sir, impress
the hell out of me.
Also, a picture of a leader. Lead on!
It still feels weird to say. When I was told 2.5 years ago that I had 3 years to live, I didn’t believe them, but also never thought I would be able to say it. I ended up getting treated
at Moffitt Cancer Center in Tampa. One of the top 10 cancer centers in the US. But still advocated for myself and pursued a liver transplant at URM Strong Memorial Hospital
in Rochester N.Y.
Are they based in the US or Canada?
Liver Transplant hospitals in North America – Search (bing.com)
My best suggestion is to connect with one of about 15 centers in NA who perform liver transplants. Toronto General, URM (Rochester NY), Cleveland Clinic, Univ of Pittsburgh, Washington University – St Louis do more than all the others combined.
When you are down and all the odds are stacked against you, remember one thing,
you are not a statistic. You are a remarkable human capable of unimaginable things.
Let the world feel your heartbeat
#relentless #resilience#fightcrc #strongarmselfie #stage4 #colorectalcancer #donatelife
May 30 2023 Today is 2 weeks to the day I was given a new lease on life.
Hopefully one that will remain cancer free.
It’s all possible because of a #livingdonor like Beth and the amazing transplant team
led by Dr. Hernandez at URM Strong Memorial Hospital. #FightCRC #ShareMyLiver
TCups Mom @TcupsMom
I had a doc tell me I was going to die and I want comfort care on Jan 22 when
both my kidneys and liver shut down. I regained full mobility and new docs can’t
figure out why it happened or why my numbers don’t make sense to this day.
Yes. In my colon and all over my liver. Not a candidate for resection.
I’d suggest URM Strong Memorial Hospital or University of Pittsburgh.
Happy to connect you with URM. And check out
The Heartbeat That Changed the World | HuffPost Impact
“Let the world feel your heartbeat.” Wow, that’s a beautiful statement. Thank you.
Today, and every day, from now on, I will strive to let the world feel my heartbeat.
Tim’s Liver (timsliver.com) hear, hear. and congratulations to you.
I have also lived beyond my “expiration date;” and wonder if I would have accepted
the statistics as my fate. Tim McDonald was diagnosed with stage IV colon cancer with
metastases to his liver in November 2020.
One oncologist told Tim he had three years to live. Another oncologist told Tim his life expectancy would be “in the five-year range.” When Tim went to Moffitt Cancer Center
in Tampa, his doctor didn’t discuss his life expectancy, but rather how they could fight
Tim’s cancer.
July 11 2022 Colon Cancer Patient, Tim McDonald, Needs a Liver Donor –
WE Have Cancer (wehavecancershow.com)
July 12 2022 Tim McDonald needs a liver donor. You might be the match. –
Man Up to Cancer (captivate.fm)
Initially told he would be on chemo ( Folfoxfiri and then Folfiri) for life and was not a suitable candidate for liver resection, Tim learned about Colontown through Man Up
to Cancer and was put in touch with Dr. Hernandez who performs liver transplants at University of Rochester Strong Memorial Hospital.
In March 2022, Tim had his donor meeting, and he believed obtaining a live donor for his stage IV colorectal cancer living donor liver transplant surgery would be the relatively easy part. Fifteen months later, Tim said finding a liver donor was more difficult and frustrating than he thought it would be.
On April 3, 2023, while celebrating his wife’s birthday on a cruise, Tim learned that he now has a liver donor, and he will be undergoing stage IV colorectal cancer liver transplant surgery on May 16, 2023. More than a week after learning Tim’s transplant team found a donor for him, April 12 was another big day for Tim when he rang the bell signaling the end of chemo treatment, something he never expected he would get the opportunity to do.
Preparing for Liver Transplant Surgery
Tim’s story is a little different from Carole’s since he was responding well to treatment without the devastating effects that Carole’s treatment caused to her liver. With a colon resection surgery completed in March 2022 and other concerns addressed, Tim was relieved to receive the results that everything was OK, and he could continue on toward liver transplant surgery. His donor search officially began.
Although an optimistic and patient person by nature, Tim was surprised that the search for a liver donor took longer than he anticipated. Out of everyone he knew who had liver transplant surgery, finding his donor took the longest. When he received news of his liver donor and was given a living donor liver transplant surgery date, Tim learned that he needed to be off chemotherapy for four to six weeks, so his body could recover from surgery more quickly.
His final chemo treatment placed him firmly in that four-to-six-week window,
and Tim was able to ring that bell, something he never thought he would be able to do since he believed he was on chemo for life. Tim’s pre-op visit is scheduled a week before his surgery.
He will get a chest x-ray, a CT scan, and more blood work. All of his other screening had been done during a two-day evaluation in December 2022, when Tim’s transplant team initially believed they had found Tim’s donor.
At that time, he had the stress echo test, and the initial meetings with everyone working
on him and his care team. They took 27 vials of blood, the most blood Tim said he has ever had taken. Tim is prepared. He has been eating healthy, not drinking or smoking. He feels he has prepared his body to go through surgery most effectively and to recover quickly. Finally, he knows how important it is to walk and move post-surgery.
Potential Donor Disappointments
For stage IV colorectal cancer live donor liver transplant surgery, candidates need to get their own donor (directed donor), where the donor needs to call the transplant team at the facility the recipient is being treated, give the name of the person who needs the liver, and date of birth. During his donor search, Tim specifically did not ask anyone he knew – not friends, family, or even acquaintances – for a liver donation because he didn’t want them to feel obligated or pressured.
Over the past 15 months, Tim met or had people reach out to him who attempted to become donors for him. His research revealed that most people average five to seven potential donors before they find their donor match. There were at least nine people –
but probably 10 – that Tim knew of who were screened as a potential donor beyond the
initial phone call before he found his match.
To paraphrase Mike Tyson,
“Everybody’s got a plan until they get punched in the face.”
“I think getting cancer is getting punched in the face. I think going through this donor process and not knowing that a potential match – why they weren’t, and why they’re not anymore – is a punch in the face. And every time you get that, you need to figure out how you can react to it.”
–Tim McDonald, stage IV survivor and liver recipient scheduled for live donor liver transplant surgery on May 16
Ultimately Tim realized the only thing he can control is his reaction, not the situation. He no longer focuses on the control he thought he had, but instead focuses on his reaction to the news he is getting. So although he has received disappointing news while waiting for his liver donor to be found, Tim no longer felt depressed or resentment. He kept moving forward.
The Silver Lining
While he was patiently awaiting his own liver donor, Tim realized there was a need for people who may not be donor matches for him, but who could help others. He created a site, Share My Liver, in an effort to help guide others who have stage IV colorectal cancer with unresectable metastases to the liver to find their donors. The same week Tim found out that his transplant team had located a liver donor for him, the first confirmed match on Share My Liver came through. Tim is overjoyed.
Meeting His Donor and His Happily Ever After
Tim had an hour-long conversation with his live donor, and he is looking forward to meeting her and her husband for dinner in person when he travels to Rochester, New York, for his surgery. What Tim is most excited about with his liver transplant surgery is that this surgery provides the highest projected rate of long-term survival compared with any other treatment.
Roberto Hernandez-Alejandro, MD, FACS, FRCSC,
On Tim and Living Donor Liver Transplants…
In May, Roberto Hernandez-Alejandro, MD, FACS, FRCSC, Professor of Surgery; Chief, Division of Transplantation, Hepatobiliary Surgery, University of Rochester, will perform Tim’s live donor liver transplant surgery at Strong Memorial Hospital, Rochester, New York. Dr. Hernandez is looking forward to helping Tim become cancer free. According to Dr. Hernandez, “Liver transplantation is for a specific and a very narrow population who has stage IV colon cancer.
Tim has fallen into this small population of people eligible for a liver transplant from a living donor. Imagine having a 30% chance of being cured instead of surviving to five years with a 5% to 10% chance. With liver transplantation, there is a 50% chance of surviving at 10 years. This is a huge difference and also factors in the quality of life of liver transplantation as well.”
The Screening Process for Donating a Liver
When someone decides to donate a liver, it’s not as simple as a phone call or email that puts them on a list. Tim’s experience is that screening is a two- or three-month-long process per potential eligible donor.
The screening process entails:
An initial phone call
An evaluation phone call
Blood work
Sending medical records
Colonoscopy
CT scan
Liver ultrasound
This screening process occurs one person at a time and one step at a time. There are
never multiple people being screened to become a donor for the same recipient. While the process is methodical, it is also stressful to the recipient who is waiting to learn of a match.
Interesting Facts About Stage IV Colorectal Cancer Liver Transplant Surgery.
Right Side vs. Left Side
So far, Dr. Hernandez says that his team has done fewer right-side colon cancer live donor liver transplant surgeries compared with left-side colorectal cancer transplant surgeries. Right-side colon cancer is typically more aggressive, so the liver transplant team needs to be more cautious with people who have colon cancer on the right side.
Liver Transplant Surgery in the United States
Liver transplant surgery for people with stage IV colorectal cancer has only been performed in the United States for the past five years. To date, more than 40 live donor liver transplant surgeries have taken place.
“We need to educate people that this is a possibility that exists. Physicians and patients may think a liver transplant is the last resort. If a patient is diagnosed with stage IV colorectal cancer with metastases only to the liver, then we can meet and generate a plan. First the patient will be treated with chemo. Next the primary tumor will be removed. Then we can begin the work of setting up the process for living donor transplantation.”
–Carole Motycka-Mancini – Search (bing.com)
As someone who had all but run out of options:
Carole recommends consulting your physician team to find what fits best
for you and the opportunities that exist for your particular cancer profile.
“Five years ago, it was just me. Today, there are more than 40 of us who
have transplanted.”
People who donate their livers go on to live a completely normal life. Their liver regenerates. If you donate the right side of your liver, you don’t grow a new right side,
but the left side grows to compensate for the portion missing from the right side.
The liver can regenerate anywhere from 80% to 105%, according to Dr. Hernandez.
Dr. Hernandez’s final suggestion is not to lose hope.
If a person is told they are not a candidate for stage IV colorectal cancer liver resection surgery, they should not hesitate to seek out a second or third medical opinion if they feel they need it. Dr. Hernandez has seen people who were told they had unresectable tumors in their liver, but when he reviewed imaging, he saw these tumors could be resected.
To Learn More:
Many organizations accept organ or tissue donations.
If you’re interested in donating for someone specific such as Tim through the University
of Rochester. Medical Center Liver Transplant Program, or Carole through the Cleveland Clinic Transplant Team, be sure to contact the potential recipient’s hospital’s transplant team for more information and instruction on how to proceed and get screened to give a second chance at life to people with stage IV colorectal cancer. From Stage 4 Cancer to CANCER-FREE: Guy Tenenbaum Success Story – YouTube