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Fighting the cancer battle and winning – Karrie’s story

Written by Contributor. Posted in Featured, Health & Wellness

Published on July 24, 2019 with No Comments

By Elizabeth J. Anderson

For most women, there is nothing more fulfilling in life than becoming a mother.  Most accomplish motherhood with relative ease, but Karrie’s pathway to motherhood began with a frightening diagnosis.  In 2007, during her first pregnancy at age 37, Karrie was diagnosed with Essential Thrombocytosis (ET), one of a related group of blood cancers known as “myeloproliferative neoplasms” (MPNs) in which cells in the bone marrow that produce the blood cells develop and function abnormally. The discovery was made as a result of routine blood tests administered during her pregnancy.

The normal range for platelets is 200-400 and Karrie’s were 1,550. Her doctor’s first thought was that this must be a lab error, but retesting confirmed the high platelet count.  As a result, Karrie underwent genetic testing and it was confirmed that she had ET, caused by a genetic mutation which is acquired after conception, and is not inherited.  It is known to be caused by toxic exposure and exposure to radiation.  In Karrie’s case, she had a mutation in hematopoietic stem cells in her bone marrow, which regulate blood production, resulting in overproduced blood components. This leads to a risk of both blood clots and stroke, and the condition can worsen over time into other more serious MPNs, including leukemia and myelofibrosis.

Karrie Schwartz pictured with her husband John Twohy of Munster, IN and their two children, John and Astrid Twohy.

Despite her diagnosis, Karrie was able to carry her baby to term with the addition of only low dose aspirin during pregnancy.  The risk of bleeding made it too risky for an epidural, and attempts to induce labor were unsuccessful.  Ultimately, Karrie underwent an emergency Cesarean section, and delivered a healthy baby boy.  It was a joyous occasion for Karrie and her husband John.  They celebrated the birth of their first child, and their hearts were filled with a level of love they didn’t know existed.

Karrie and John wanted to have another child, but unfortunately Karrie suffered two miscarriages.  In 2009, her condition worsened from ET to a more serious MPN known as Polycythemia Vera (PV), a slow-growing blood cancer in which the bone marrow makes too many red blood cells. These excess cells thicken the blood, slowing its flow, allowing for complications such as blood clots leading to a heart attack or stroke.  Not only were her platelets elevated, but her white and red cells elevated as well.  A hematologist recommended taking Hydroxyurea, a form of chemotherapy that is inexpensive and commonly used to treat PV, however, some studies have shown the use of Hydroxyurea increases the risk of leukemia, and is contraindicated in pregnancy.  Karrie and John opted not to take the chemotherapy, but instead went on a mission to find a better path to treat Karrie’s condition.

Through online research and patient networks, Karrie found the MPN Research Foundation, a Chicago-based foundation that was started by an MPN patient.  Through the Foundation, Karrie found a hematologist at Rush Medical Center, and together they agreed that the use of an interferon known as Pegasys, which is typically prescribed for use with hepatitis C medicines, could be a good fit for Karrie.  It is not fully understood why interferon helps patients with MPNs.  However, there is ongoing research showing that it is effective in causing remission, both in blood counts, and sometimes in the bone marrow as well.

Pegasys is prescribed “off-label” for MPNs, which means it is not FDA approved for Karrie’s condition.  However, in the nine years she has been on it, it has become an increasingly common treatment both in the United States and around the world.  While Karrie was prescribed weekly injections, the European equivalent of the FDA just endorsed a new, more advanced form of interferon for MPNs that allows injections to be taken every two weeks, and MPN patients are hopeful this will also be offered here in America.

Karrie went on Pegasys in 2010, and soon her blood counts were stable and vastly improved.  With this treatment, it is expected that Karrie can continue to live a nearly normal life with a normal lifespan.  Since the use of Pegasys has become more widespread, many MPN patients are able to live longer.

Thanks to their perseverance in finding the right treatment, Karrie and John’s dream of having another child has come true.  They welcomed the birth of their second child, a daughter, completing their family.  Although Karrie must continue her treatment to keep her blood cancer in check, she and her family enjoy a normal, happy life together.  Her advice to anyone suffering any medical condition is to do your homework, researching as much as possible and looking for the best treatment for your condition.

Support groups for MPN patients are found across the U.S., and patients are also active internationally in online networks. For more information, visit the MPN research foundation at http://www.mpnresearchfoundation.org.

* This does not constitute the practice of medical advice, diagnosis or treatment. Always talk to your health care provider for diagnosis and treatment, including your specific medical needs. If you have or suspect that you have a medical problem or condition, please contact a qualified health care professional immediately. If you are experiencing a medical emergency, call 911 or call for emergency medical help immediately.

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