Lately I’ve been in touch with a few other patients struggling with the same disease. My new friend Carolina DeHond has done so much work to create a network and start some discussion. Thanks for all of your efforts Carolina! Although we have not met in person, many of us have been sharing stories. The stories alone have created a connection. Below I have posted the stories of my CCS friends where given permission.
I am wife to an incredible husband, Craig and a Mother of two beautiful daughter’s (Victoria who is 9 years old and Mikayla who is 6 years old). I am blessed to be surrounded by supportive, loving family and friends!
I share the same cancer as Bret (Clear Cell Sarcoma). I noticed a dime sized “bump” on my left foot just under the big toe bone area. It had been bothering me for some months before I finally went to get it checked out. On May 2, 2007 (I was 28 years old) I was told by a medical professional the bump on my foot was from my shoes and was sent home 😦 After a year passed the bump continued to cause pain and discomfort I finally insisted the “bump” be checked out. Along with most if not all other CCS patients, I was Misdiagnosed 😦 The needle biopsy confirmed I had a rare cancer, Clear Cell Sarcoma (CCS). A 7 1/2 hour surgery was performed on May 5, 2008 to remove the tumor “bump”. Once my diagnosis was confirmed more tests were ordered which included PET & CT scan and Nuclear Bone scan. We traveled to Buffalo (Roswell) and Boston (Dana-Farber), NY for 3 other Doctor’s opinions they decided they can save my toe instead getting it amputated as originally proposed! On May 5, 2008 I had my first CCS surgery to remove the tumor “bump” from my left foot. I had reconstructive surgery after removal of tumor which included my left hand. They took a tendon, nerve, artery, vein and skin from my left hand to put into my left foot! Then they took a skin graph from my left hip to replace the skin on my left arm (wrist area). I was in the hospital for 11 days and bound to bed or wheelchair for 2 months, since I was not allowed to bear any weight on my foot 😦
My second tumor (It metastasized) -a routine PET scan picked up a “hot spot”. So after 2 years and 4 months of being told I was “Cancer free” the cancer was detected again. 😦 I was given the news of my 2nd occurrence on October 8, 2010 😦 This time it was found in my left distal femur (just above my left knee). I had my 2nd surgery on October 25th. They removed 10cm of my femur bone and part of the tibia bone. Now I have titanium to replace the knee and titanium rods inside my remaining femur and tibia bone. Surgery lasted 5 hours this time with 10 day stay at Highland Hospital. Still recovering from that surgery a year and a half later.
I wish I would have started this sooner but just since my last occurrence I have completely changed my diet eliminating extra sugar, fluoride, dairy, meat and any processed/GMO foods. I have become vegan and feel healthier for it. We use coconut oil for high temperature cooking and extra virgin olive oil for low temp use (absolutely No vegetable, canola or soy type oils). I am on many different alternative treatments from various clinics and researchers. I have never had chemo or radiation. We have been warned by MANY experts that they are useless at best, and often damaging, causing everything from brain damage to organ damage to a weakened immune system and worse. Our thanks go out to courageous researchers like Dr. Revici, Dr. Rife, Dr. Gerson, Dr. Budwig and many others who have pioneered advances in cancer treatment that have helped tremendously. We have recieved help from all over the world in fighting this cancer – we have seen that there are many effective cancer treatments available in Germany, Mexico and the U.S.
I know spiritual healing and the dynamic ability of our minds, through POSITIVE THINKING Can HEAL our bodies! I also believe in Miracles 🙂 We were forced to look into non-conventional treatments since the Drs. here have told us if it spreads there is nothing they can do 😦
A few things we have learned along the way:
-We (and our doctors) never know if we are “Cancer Free”- usually, the cancer is just “Not Detectable”! Assume the phrase “Cancer Free” is a lie, unless PROVEN otherwise (and good luck trying to PROVE that).
-We as patients have to be our own advocates as we know our bodies better then Anyone else!
-Once you have cancer- if you don’t change your bodies (through major diet changes, and many other techniques) we create a welcoming environment which encourages the cancer to metastasize) 😦
-Cancer Loves Sugar 😦
-Fight the cancer early and hard -even if you are lucky enough to have caught it before it has spread all over – assume it has spread and treat it as such, make changes and Fight 🙂
All in all we are so grateful to all of our family and friends for all the Love, Support and Prayers we have so graciously received during my journey with cancer!
“Live in the PRESENT, so you won’t dwell in the PAST or worry about the FUTURE”
I am 30 years old and I also have Clear Cell Sarcoma. I am married (Jen) and have 18 month old twin daughters (Laynie & Rylie). I first noticed small pain in my left toe in early 2004 or late 2003 after playing a flag football game. I figured it was turf toe or just a minor injury. I am pretty sure a small bump began to form in 2004, the bump was on the left side of my left big toe, kinda like a bunyon. My father vividly rememebers me complaining about my foot at our wedding on 06/05/2004. Well years went by and the bump would grow and then shrink again. I would always notice the pain when I played softball, but nothing severe. I can remember showing the bump off to people at work in 2005 and 2006, everyone always told me to get it checked out, but I am stubborn and was not going to be sidelined by a minor injury in my big toe. In September of 2008 I went to my doctor for a minor cold and asked him to look at my toe, he looked at it, then grabbed it and said “well it is a mass of some sort,” then he asked me if it bothered, I said “no” and he sent me home with Naproxen for the swelling. I went back to the doctors again 2008 and he said it may be gout, he checked my Uric Acid levels and they were slightly high, he chalked it up as gout or arthritis. Finally I went in again in July of 2009 and I was referred to a Podiatrist.
I went to the Podiatrist in September of 2009. The Podiatrist ordered x-ray and immediately told me it was tumor, but it was most likely benign. The podiatrist sent me for an MRI, the MRI findings said it was Giant Cell Tumor, but suggested that I have it removed for further testing. I set up a outpatient surgery on 10/06/2009 with my Podiatrist, he removed the tumor (2 pieces, 4cm and 2.5 cm) with a small incision on the side of my big toe. After surgery, my Podiatrist said the tumor was large and it was wrapped around my tendon but it looked like every other benign tumor he has encountered and said it was 99.9% benign, but it would be sent to Pathology for further testing. After 3 days I received a call from my Podiatrist informing me that it was possibly a Malignant Spindle Cell Tumor but it need to be sent to the experts at the University of Michigan for an exact diagnosis, well that diagnosis came a few days later from my Podiatrist over the phone, he said “write this down, Clear Cell Sarcoma,” which was my diagnosis. The googling began by everyone I know and the the searches were, less than good…..actually really bad. I can remember reading “long term survival is dismal” in pretty much every article I read.
Now onto the Orthopedic Oncologist world (never new the two words ever went together), I met with 3 Orthopedic Oncologists, Dr. Michael Mott, Dr. James Irwin and Dr. Sybil Bierman. I had CT Scans of my torso which were normal and a second MRI of my foot, the MRI revealed small amounts of tumor left at the surgery site. All three doctors said this is very bad stuff and would do nothing less than at least partial amputation of my foot. I decided on Dr. Sybil Bierman at the University of Michigan Sarcoma Center. Dr. Bierman suggested that I at least have a First Rae Amputation (basically my big toe and a part of my foot) and she would test the surrounding tissue in the O.R. and if it was positive for Cancer, she would do a Below the Knee Amputation. Dr. Bierman also ordered a Sentinal Node Biopsy. Surgery day was 11/24/2009, God was on my side, I woke up with to only losing my Big Toe and the Node test was negative for Cancer. As of now I am Cancer Free, I have X-rays of my chest and a Lymphnode exam every 90 days and an MRI of my foot every 180 days. It has been 1 year and I am still Cancer Free.
I have a Facebook Page set up that I post updates on, ithe link is http://www.facebook.com/photo.php?fbid=377404003860&set=a.439247003860.217288.617323860#!/group.php?gid=160464308195
I WAS 23 YEARS OLD WHEN A BUMP FORMED ON MY LEFT INSIDE OF THE FOOT BETWEEN THE HEEL AND ANKLE. AFTER A WHILE IT STARTED TO GET HARDER AND HARDER TO WEAR SHOES OR WALK LONG DISTANCES BECAUSE IT WOULD AGITATE IT. I SAW A PODIATRIST IN WASHINGTON STATE AFTER MY MOM TOLD ME I NEEDED TO GET IT CHECKED OUT. I AM NOT ONE TO GO RUNNING TO A DRS OFFICE AS I AM OVERWEIGHT AND THEY ALWAYS FORGET THE REASON I AM THERE AND TALK ABOUT MY WEIGHT AND IT JUST MADE ME WANT TO GO LESS AND LESS TO A DRS OFFICE. I FIGURED THEY WOULD TELL ME THE BUMP WAS FROM ME BEING OVERWEIGHT AND IT WAS SOMETHING I DIDNT WANT TO HEAR OVER AND OVER. WHEN I SAW THE PODIATRIST 2 YEARS AGO THEY TOLD ME IT LOOKED LIKE A GANGLION CYST. THEY NUMBED THE AREA AND TRIED EXTRACTING FLUIDS TO GET A BETTER READ ON IT. SHE TOLD ME TO LEAVE IT ALONE THAT THEY USUALLY GO AWAY ON ITS OWN AND IF IT STARTS TO BOTHER ME MORE AND MORE I COULD CONSULT WITH A SURGEON. THE IDEA OF SURGERY AND SEEING ANOTHER DR WAS NOT IN MY PRIORITY LIST SO I DECIDED TO LET IT STAY AND JUST DEAL WITH IT AND THE PAIN THAT FOLLOWED. IN MARCH OF THIS YEAR I MOVED TO TEXAS TO LIVE NEAR MY PARENTS AND BROTHERS FAMILY. I WAS HAVING SOME MAJOR ANXIETY PROBLEMS AND DEPRESSION AND WE THOUGHT IT WAS BEST FOR ME TO MOVE OUT AND BE NEAR THEM. AROUND THAT TIME THE BUMP GREW (WHICH I SAW IT DAILY SO I COULDNT TELL, BUT WHEN MY MOM SAW IT SHE ABOUT PASSED OUT) AND STARTED TO BECOME MORE AND MORE PAINFUL. I COULDNT WEAR CERTAIN SHOES ANYMORE AND THE SKIN IN THAT AREA WAS PRETTY TIGHT AND THIN. WHEN I SAW MY PARENTS AFTER I MOVED TO TEXAS THEY FREAKED OUT AND FOUND A DR ONLINE FOR A SECOND OPINION. NOT EVEN A WEEK AFTER MOVING HERE I SAW THE DR. HE WALKED IN THE ROOM AND WAS LIKE UMM THATS NOT A CYST THAT IS A TUMOR YOU NEED SURGERY ASAP. I HAD AN XRAY IN HIS OFFICE AND HAD MY FIRST SURGERY 2 DAYS LATER. THAT NIGHT MY MOM TOLD ME THE HORRIBLE NEWS ABOUT IT BEING CCS. I WAS SO UPSET AND STARTED HAVING A PANIC ATTACK. THE NEXT WEEK I SAW MY ORTHOPEDIC ONCOLOGIST WHO SAID THEY TOOK MY CASE TO THE MEDICAL BOARD AND TALKED ABOUT IT ALL WEEK AND DECIDED TO TREAT THIS AGGRESSIVELY AND TO DO A RADICAL AMPUTATION RIGHT BELOW MY LEFT KNEE. I JUST HAD MY FIRST SURGERY AND WAS NOW TOLD I WOULD LOSE MY LEG AND MAY NOT GET TO WALK AGAIN. I WAS DEVASTATED. I WAS 25 AT THE TIME AND I FELT LIKE MY LIFE WAS FALLING APART RIGHT BEFORE ME. A WEEK AFTER THAT I HAD MY SURGERY AND WAS IN THE HOSPITAL FOR 4 DAYS FOLLOWING SURGERY. I TOLD ALL OF THE NURSES I DIDNT WANT TO SEE MY LEG AND I MADE THEM PUT A PILLOW AT THE END OF MY CAST SO I DIDNT SEE ANYTHING AND I ALWAYS HAD COVERS ON. IT WAS HARD FOR ME AND MY FAMILY. I AM NOW IN A WHEELCHAIR AND AWAITING TO GET FITTED FOR MY PROSTHESIS. I AM LOOKING FORWARD TO MORE INDEPENDENCE AND NOT HAVING TO STAY HOME ALL DAY WAITING FOR SOMEONE TO COME HELP ME WITH LAUNDRY OR CHORES OR TAKING ME TO WORK OR TO THE STORE. I DID TAKE 8 MONTHS OF WORK OFF (I WORK FOR MY FAMILIES COMPANY THANK GOODNESS) AND FOCUSED ON MY HEALTH AND POSITIVE THINKING. I TRIED TO TELL MYSELF THAT GOD CHOSE ME TO HAVE THIS CANCER FOR A REASON AND I WANTED TO TRY AND HELP OTHERS AND BE OF SUPPORT TO THEM. I STARTED A BLOG AT WWW.DANISOLBERG.COM. YOU ARE ALL WELCOMED TO CHECK IT OUT ANYTIME. I NEED TO GET BETTER ABOUT MY UPDATES, BUT I WANTED TO BE ABLE TO HELP OTHERS OUT SINCE I HAVE TO GO THROUGH THIS. RIGHT AFTER MY AMPUTATION WE STARTED ME ON AN AGGRESSIVE CHEMO. WE WENT BACK AND FORTH FOR A WEEK ABOUT SHOULD WE OR SHOULDNT WE. ALL OF THE DRS FELT IT WAS THE WAY TO GO AND I JUST WASNT SURE. WE TALKED ABOUT GOING TO MD ANDERSON IN HOUSTON, TX BUT THEY WERE HORRIBLE TO TALK TO ON THE PHONE AND IT WAS ALMOST IMPOSSIBLE TO GET IN THERE TO SEE THEM. WE DECIDED IT COULDNT HURT MUCH TO GO WITH THE CHEMO. I JUST FINISHED AND HAD MY TESTS SHOWING I AM STILL CANCER FREE AT THE MOMENT. SO FAR THAT IS MY STORY AND IT HAS BEEN GREAT READING ALL OF YOUR STORIES.
Holly Burke (by Holly’s Mother, Carol)
It was September 7, 2008 when on Holly’s 18th birthday she started complaining about her shoulder. After going to our MD. he suggested going to get an xray at Sacred Heart Hospital in Destin, Fl. The radiologist diagnosed it as a torn muscle. Another month went by and the pain seem to get worse and a slightly raised area appeared. Back to the MD where he said to get another xray. The same Hospital gave a different diagnosis of a hemmatoma. Their suggestion was to have physical therapy to break it up. The physical therapy was done for about a month until Thankgiving. Due to the holiday, Holly didn’t go back to therapy for about a week. When she did return the area had grown. An appointment was made to see an Orthopedic surgeon. Due to the lump Dr. Fox sent Holly immediately down to Shands Hospital in Gainesville Fl. At Shands we met with Dr. Gibbs. He did a needle biopsy. From the biopsy, the pathologists at Shands couldn’t diagnose what it was. They had to send the biopsy to a microbiologist in another state. After waiting a long 2 weeks we got the news that it was a rare and aggressive cancer. This new came on December 18th, 2009. Shands sent us to St. Judes Children’s hospital in Memphis at our request. As good as Shands is (They are a teaching hospital with an amazing reputation.
Chris Roberts was diagnosed with CCS on February 11, 2010 and passed away on September 28, 2010. Chris was 27 years old – 27. In hindsight, many people our age don’t think of being delivered the terrible news Chris received – that you have cancer and that there is no cure. Most of us (thankfully) do not have to face our own mortality on a daily basis, like Chris had to do for nearly eight months. Chris did so with such strength and dignity; he is far and away the strongest person I have ever known.
Chris and was a self-proclaimed “gear head” from a very young age. Chris and his dad would restore old cars and would occasionally race a few of them at the local speedway. Chris’s dream was to build his own diesel pickup, a dream that he was unable to fulfill before his passing. Chris loved sports – he played football in high school and loved to watch college football (the Iowa Hawkeyes were his favorite team.) Chris also loved the blue pit bull, Junior, that his dad had bought a few months before Chris was diagnosed. After high school, he graduated from college with a degree in finance (he was also a member of the Sigma Alpha Epsilon fraternity) and worked in the insurance industry before becoming a supply management specialist for John Deere.
Chris initially discovered what we would later find out was CCS in October 2009. That
month, Chris and I were both in our good friend’s wedding and Chris had to wear a pair of uncomfortable tux shoes that weekend. Immediately after the wedding, Chris was in two more weddings in October and November and had to wear bad tux shoes again; so, when a blister/callus (what Chris thought it was at the time) popped up on his left foot, we chalked it up to being from the shoes. However, as Thanksgiving approached the “blister” grew and continued to grow as Christmas came around. Around Christmas, Chris decided he would go in and see a doctor about this – which was compounded by the fact that another bump popped up in his left groin area. In early January 2010, two separate primary care doctors told Chris that the “bumps” were simply fatty tissue or an infection and put him on antibiotics. When the bumps continued to grow, we became nervous so Chris called his podiatrist (this particular doctor had performed surgery on Chris’s other foot when he was in high school – football injury) and scheduled an appointment. Upon seeing the “bumps”, Chris’s podiatrist immediately scheduled surgery and removed the tumor in his foot early February 2010. On February 11th, we received the news for the podiatrist – the pathology report had come back and Chris’s bump was a 5.4 cm tumor – clear cell sarcoma.
Chris was immediately referred to the orthopedic oncologists at the Mayo Clinic in Rochester, MN (Chris lived in Iowa, so this was a relatively short trip) where Dr. Rock was Chris’s primary orthopedic oncologist. Chris’s initial meeting with Dr. Rock and his team was to basically tell us how rare CCS was (ironically, Dr. Rock had apparently just diagnosed another person with CCS earlier that day) and that, if the cancer had not yet spread, that he would perform surgery on Chris’s foot and excise additional tissue around the initial site in the hopes that he could remove any remaining CCS cells. After the meeting, Chris had several MRIs, scans, etc. done and received the results a couple of days later. To our dismay, the cancer had already spread up his left leg, his hips and sternum. At this point, surgery was no longer an option for Chris, so Dr. Rock informed Chris that aggressive chemotherapy and radiation were his best options. Chris asked if he could have the chemotherapy and radiation administered at a hospital closer to home; the Mayo Clinic agreed, so Chris chose the University of Iowa Hospitals and Clinics as his “local” hospital.
Dr. Mohammed Milhem, a.k.a. “Dr. Mo”, became Chris’s “local” oncologist at the U of Iowa Hospitals. Chris and I had his initial meeting with Dr. Mo in March 2010; Dr. Mo was the first doc to tell Chris that we was, in fact, “terminal” and that since his cancer had spread, the goal at that point was to “prolong his life as much as possible” (not exactly what we expected or wanted to hear.) Nonetheless, Dr. Mo specialized in sarcomas and had told us not to give up hope – he had a patient with CCS several years earlier that progressed to the point where the cancer had spread to her brain, only to find that it had disappeared several months later. Based on our research, Dr. Mo confirmed that chemotherapy and radiation only had about a 5% success rate in CCS patients; thus, Dr. Mo recommended Chris consider joining a clinic trial (drug: PF-02341066) at the Dana Farber Cancer Institute in Boston. Chris agreed that this would be his best option (the trial was showing a 20-30% success rate in slowing or stopping the growth of CCS cancer cells) so he traveled to Dana Farber and met with Dr. James Butrynksi, one of the physicians/researchers for the trial.
Chris saw some success with the Dana Farber trial; during one of his visits, one doctor
commented on how a couple of the tumors in Chris’s groin had started to liquefy, an apparent sign that the drug was working. Unfortunately, the tumor in Chris’s sternum and spine continued to grow and eat away pieces of bone – which became excruciating for Chris, to the point where it became extremely difficult for Chris to do much of anything. For whatever reason (still unknown to us), Chris would be feeling okay prior to each of his trips to Boston every two weeks for treatment, but the minute he got on the plane to go to Boston, he would become violently ill and would then have to be hospitalized in Boston for several days afterward. The only thing the doctors could figure out was that the pressurized cabin, altitude, etc. was putting pressure on the tumors in Chris’s chest and spine which was ultimately causing him so much pain, vomiting, etc. during each plane ride.
Shortly before Memorial Day 2010, Chris became extremely ill and was rushed to the University of Iowa Hospitals and Clinics, where he remained for nearly six weeks. It was discovered that he had numerous blood clots in his lungs and the cancer had spread. Dr. Mo and other doctors at the U of Iowa worked to stabilize him with pain meds and come up with a plan for “where to go from here.” Since Chris was no longer able to travel to Boston for the Dana Farber trial, this was not longer an option for him. However, Dr. Mo was administering a trial drug, Sutent, through the University of Iowa so Chris decided to try this drug. In June, it was discovered that the tumors in Chris’ chest were now pushing on his esophagus, heart and other organs (though not attached to any organs at this point – it was just on his sternum) so Chris and the team of oncologists decided to radiate several spot in his chest, arm and spine to alleviate some of the major issues (trouble swallowing, breathing) Chris was experiencing. Fortunately, the radiation shrunk the tumors and allowed Chris to breathe easier, eat, etc. Chris was stabilized in early July and was sent home (at this point, Chris moved back home to his father’s house; his father had recently retired and could provide care for him, along with nurses) and stayed at home – other than a brief hospital stay in July – until late August 2010.
In July and August, Chris’s cancer continued to spread to the point that treatment was halted and palliative care became the primary focus. In early September, Chris made the decision to admit himself to a hospice care facility where he spent his last weeks.
In my conversations with Mike Gratz (CCS patient) and numerous healthcare professionals familiar with CCS, there seems to be two forms of CCS – a non-aggressive type and an
aggressive type. Unfortunately, Chris seemed to have the aggressive form of this horrible
I wish that Chris could have had the opportunity to meet and talk to you all before he passed away. Although Chris was in contact with another CCS patient (Doug Roth), I know Chris felt alone in his battle at many points in time. Although Chris has so many amazing people surrounding and supporting him – his lifelong group of friends, dozens of his fraternity brothers, family and co-workers (a side note: Chris worked for John Deere; John Deere as a company, along with Chris’ direct bosses – Denny and Daria – were the most understanding and supportive people/company I have ever seen) the fact of the matter is “we” (those who don’t have CCS) cannot fully grasp what so many of you face on a day to day basis.
Chris is, without a doubt, the strongest person I have ever met in my life. I wish you all could have met him – he had such a wonderful disposition and was always so gracious, warm, kind and his infamous quick wit and sarcasm helped all of us stay positive in his fight.
Chris kept a blog to document his battle, which can be found at http://
chrisrobertssarcoma.blogspot.com . In addition, Chris’ lifelong friend, Aaron, has set
up a website that people can donate to the “Chris Roberts Sarcoma Memorial” http://www.chrisrobertssarcoma.bbnow.org/index.php . The money donated will go toward a beautiful stained glass window that is being designed and will be installed in the Sigma Alpha Epsilon (the fraternity Chris belonged to) on the University of Northern Iowa campus in Chris’s name.
During Chris’s battle, he would regularly say to his friends and family to “keep you chins up and keep fighting the good fight”…I hope each of you are doing the same.