As a part of our Faces of Courage series, we are featuring a patient story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.
Our Patient of the Month for October is Joel Sherr. Here is his story:
I was diagnosed with a primary rectal tumor in 1998. They biopsied it and found that it was borderline malignant and suggested that I follow up with rectal ultrasounds. Fortunately, I found the primary tumor when it was 3.4 cm and had very few mitotic divisions. I was unlucky in that after several years, my GI Oncologist who knew very little about GIST, decided that I was cured and that no follow up was needed. Because I am a physician, I was proactive and did my own research and eventually found the Life Raft Group and Norman (Scherzer, LRG’s Executive Director), who was going through a similar situation with his wife.
In October of 2004, I palpated a large lump under my rib cage. It was GIST that had metastasized to the left lobe of my liver. I contacted a very good surgeon at a major medical center who removed the left lobe of my liver and three tumors. I knew Gleevec had been available since 2002, but my oncologist never put me on the drug. I believe if he had put me on Gleevec from the beginning, I wouldn’t have had the liver mets. In April 2005, I started 400 mg of Gleevec daily. I was tumor free for almost 13 years but in April 2017, a new tumor showed up above my left adrenal gland floating in the abdominal space. I had that resected by a different surgeon than my previous one, who unfortunately left some of the tumor in me and it started to grow. My oncologist switched me to Sutent but the side effects were intolerable.
I contacted Life Raft Group and through them contacted a GIST specialist who was running a clinical trial on DCC-2618 which supposedly matched up to the new tumors genotype, which was KIT exons 11 and 13. My primary tumor was exon 11 which was targeted by Gleevec. However, several months later a new tumor started to grow in my 10th vertebra. It was still growing even though I was on the trial drug. The side effects from DCC-2618 majorly impacted my life. I experienced hair loss, muscle cramps, diarrhea, nausea, skin irritations among many more. The vertebral tumor kept growing so they tried doubling the dose. The side effects from the increased dosage were intolerable. I had to have surgery to remove my 10th vertebra, which made my life very uncomfortable and painful. I am still taking Percocet every 4-8 hours daily and they started me back on DCC-2618 at 1.5 times the dosage. My hair is falling out for the third time. I was hospitalized after the vertebral resection because the surgeon nicked my left lung and caused a major infection which sent me to the hospital and rehabilitation for months. I am now trying to cope with constant pain in my back but so far, I am tumor free. My last PET scan didn’t reveal any tumors.
You need to be VERY PROACTIVE WITH YOUR DISEASE, DO NOT TAKE THE WORD OF ANY DOCTOR, NO MATTER HOW MUCH THEY SEEM TO KNOW OR WHO HAS A FANCY TITLE. The Life Raft Group has helped me in many directions and many ways, especially Jerry Call (LRG’s Data Analyst), but even the Life Raft Group is not the end-all. You still need to be proactive and find your own way. I have experienced doctors giving me wrong advice and performing various procedures incorrectly, like following up after my primary tumor (they refused to do that because they said it was metastasized in the rectum), but I knew the liver was “grand central station” for GI mets. All the surgical mistakes and the incorrect way my complications were dealt with left me with a lung infection for months.
My last-ditch efforts are hoping they develop a cure for GIST. I don’t know where these tumors will arise again, but I don’t have many body parts I can lose. This constant back pain seems to be the last straw. I had no choice since the tumor kept growing into the neural foreman (the spinal cord area of the vertebra) and would have caused paralysis or some devastating injury to my spinal cord if it was not removed. At least I can still work and help students get out into the medical world and help people as I was trained to do.
Advice to Fellow GISTers
Hopefully a newly diagnosed patient will read my story and have hope that if they are in charge of their own health parameters, they may make it out alive. I just want newly diagnosed patients to be aware that even though a doctor has diagnosed them, they still have the option for a second and third opinion and they need to make sure that their doctor is a GIST specialist. If their doctor has very little knowledge of GIST, they need to find someone through Life Raft Group that can help them. Sadly enough, so many patients take the word of their doctor or are misdiagnosed by a family physician and end up in real trouble. I don’t know what the answer is for early diagnosis because GIST presents in so many ways, so it’s easy to misdiagnose a patient, but please be proactive with your disease and don’t take anyone’s word.
Ask your doctor for constant follow-ups every six months (CT, MRI and PET scans). It will save your life and keep you going. Consult numerous doctors, not just one, and don’t be afraid to tell a doctor that you feel certain exams should be done. If he or she won’t do them, consult another doctor. Dr Mike Heinrich at OSHU is a very knowledgeable GIST doctor whom you should consult with for genotyping. Keep all your records with you, do not rely on doctors or hospitals to have your records as they get lost very easily. I have been living with GIST for 21 years. After taking Gleevec, I was ok until 2017 when the GIST mutated to exon 11 and 13. The last several years have been one medical problem after another. The back surgery was the worst. But taking this DCC-2618 medication has not been fun either. Please keep your head held high, your eyes pointed forward, and watch your back at all times. No one else will do it for you. Remember the Life Raft Group, they will be by your side all the time, thanks to Norman and his group.
The picture I sent was taken shortly after I was diagnosed with GIST, when I had hair. Now I lost all that hair and I’m 15 years older. Gee, I look back on that picture and wonder what happened in the past 21 years – I’m still here, hairless and walking sideways, but still here.
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.
Criteria for Patient of the Month
- Patient must be a member of the LRG Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has a GIST/PRiME account
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: firstname.lastname@example.org