“She was a vibrant, energetic woman. Then all of a sudden, she wasn’t. Our devoted mother of 3 was lying fragile, almost lifeless in a hospital bed. At first, we thought it was just a bad flu, but the doctor said it was cancer, stage 4. The news knocked the air out of all of us. She had always been so healthy, so full of determination and life.”

Patient Services Inc., received this e-mail from a young lady named Ashley recently about her mother’s rare disease story and ensuing miracle.

She continues,

“The days that followed were a blur of fear and confusion. The doctors weren’t sure which type of cancer it was or which treatment they should try. She had water on her lungs, low blood oxygen, and an inflamed appendix. The gastroenterologist wanted to operate. Another specialist tried to prepare us for the worst. She was transferred to a larger hospital associated with a cancer institute.

The night she was transferred by ambulance, there was a terrible, frightening storm. It was classified as a 100-year rainfall. Our daughters were trying desperately to get to mom in time but no planes could land. How could conditions get worse?”

Over the next few days biopsies revealed the type of cancer. It was GIST, or gastrointestinal stromal tumors. GIST can be malignant (cancer) or benign (not cancer).

Before we continue with our patient story, let’s learn more about this rare disease which sees 4,000 – 6,000 cases in the United States each year.

What Is GIST?

“Gastrointestinal stromal tumors (GISTs) may be malignant (cancer) or benign (not cancer). They are most common in the stomach and small intestine but may be found anywhere in or near the GI tract. Some scientists believe that GISTs begin in cells called interstitial cells of Cajal (ICC), in the wall of the GI tract.” – cancer.gov

How Is GIST Diagnosed?

In addition to a physical examination, there are various tests that can be given the patient to diagnose and to determine best course of action for the patient. Some of these tests include:

  • Cat Scan
  • Endoscopy
  • MRI
  • Biopsy
  • Tumor Pathology
  • Molecular Testing of the Tumor
  • Fecal Occult Blood Test
  • Pet Scan
  • Barium Swallow and X-ray

What Are The Symptoms Of GIST?

Some known symptoms attributed to having gastrointestinal stromal tumors could include the following. If you or someone you know is experiencing these symptoms, please consult your doctor.

  • abdominal discomfort or pain
  • blood in the stools or vomit
  • anemia
  • painless lump in the abdomen
  • vomiting
  • fatigue
  • fever and sweating at night
  • weight loss

What Causes GIST?

The exact cause of GISTs isn’t known, although there seems to be a relation to a mutation in the expression of the KIT protein. Cancer develops when cells begin to grow out of control. As the cells continue to grow uncontrollably, they build up to form a mass called a tumor.

GISTs start in the GI tract and can grow outward into nearby structures or organs. They frequently spread to the liver and peritoneum (the membranous lining of the abdominal cavity) but rarely to nearby lymph nodes.

Who has GIST?

GIST is most commonly found in people in their 60s. These tumors are rare in people younger than 40, but they can occur in people at any age.

Can GIST Be Treated?

The American Cancer Society states on their webpage dedicated to GIST, that Treatment for Gastrointestinal Stromal Tumors (GISTs) depends mainly on the size of the tumor, where it is, how far it has spread, and how quickly it is growing (its mitotic rate). You can read more about what the ACS says in regard to GIST treatment here.   Although there is treatment available, that’s the good news.  For many, the bad news is affordability. And for those like Ashley’s mother, that’s the difference between life and death.

Ashley continues,

“There was good news and bad news. There was a drug on the market that could control the growth of this cancer and possibly deliver the kind of results we needed. The bad news was that it costs about $120,000 per year!

Our emotions were running high with the challenge of how to keep her alive. While we waited, all the other medications the doctors had prescribed were barely keeping her breathing. There was more water on her lungs; her blood oxygen kept falling; she had no energy and couldn’t eat. The Pulmonologist said that we may have to put her on a ventilator. Time was running out fast. We needed that new cancer drug. Without it, she would die! Even if our entire family tried to finance the cost by selling our homes, it simply wasn’t possible to afford long-term. What in the world could we do?”

Just In Time: A Lifeline Of Hope

“Fortunately, the cancer institute contacted PSI for financial assistance. And, PSI came through for us! The benefits they provided continue to bless us every day. The new medication made a life-changing difference. The light returned and our beloved mother came home from the hospital and made an amazing recovery. Multiple weights were lifted off all our shoulders: the fear and grief of almost losing our mother; and the impossible challenge of financing her recovery and keeping the cancer at bay for the rest of her life.

Today she has her energy back, as well as her shining blonde hair. She eats well, no longer has an oxygen tube in her nose, and enjoys each day to the very fullest. We all owe so many thanks to PSI. We have our mother back, and joy has returned to our home.”

GIST is a rare disease, and as we stated previously, there are only 4,000-6,000 known cases of it in the United States each year. For those who are battling even the rarest of disease, Patient Services Inc., wants to, if at all possible, stand in the gap not only for you, but also with you.

Thank you, Ashley, for taking the time to share your patient story with us. We are beyond excited to hear about your mother and are thankful to have been able to play a part in her recovery.

DYK That Health Care Charities (Like PSI) Are Under Threat?

If you are new to PSI and our patient blog, we invite you to get to know us more by visiting the Our Story page of our website to learn about our humble beginnings. We also invite you on behalf of a community of health care charities to learn more about why groups like PSI are under threat for helping patients just like Ashley’s mother from doing the work we are all doing by visiting our #LetCharitiesBeCharitable action page on our website here.