chronic gvhd

Peter Gordon is no stranger to the National Bone Marrow Transplant Link.  The author of "Six Years and Counting: Love, Leukemia, and the Long Road Onward"  was very well received at our book club.  Today you'll hear his story.

In 2008, this avid outdoorsman was living in the White Mountains of New Hampshire, and his girlfriend had just moved down from Montreal to marry him.  Soon after, he was diagnosed with leukemia and put on the transplant waiting list at Boston's Dana Farber Cancer Institute.  The wait for a donor was the hardest part for him, as weeks turned into months.

Eventually, Peter did get his transplant and returned to his idyllic surroundings to recover.  Soon after, his new wife slipped on ice and shattered her knee and ankle.   Peter had to take the role of caregiver as he continued his own recovery. 14 years after his transplant, Peter still battles chronic Graft vs Host Disease.  

During his treatment, he began writing a blog.  As Peter showed the outside world what his treatment was like, he discovered a passion for writing, eventually leading to the book.   He even has a section in the book on lessons for patients, called Many Medicines Besides Drugs.   Peter gives his advice, including writing down all of your symptoms, and understanding that your recovery will have peaks and valleys.  And you'll also hear a great piece of advice that Peter and his wife learned from - believe it or not - their cat, Gizmo. 

Link to Peter's Book: https://www.amazon.com/Six-Years-Counting-Leukemia-Onward/dp/1478750626

Other Resources

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Peter's book Six Years and Counting: Love, Leukemia, and the Long Road Onward

Peter's Writer/Speaker Facebook page

Peter's  LinkedIn profile

Thank you to this season's sponsors:

Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  and The Leukemia & Lymphoma Society.

https://www.sanofi.com/

https://www.lls.org/patient-support

Today, Peg is joined by Heather Younker, RDN, CSO, a dietician at the John Theurer Cancer Center at Hackensack University Medical Center.  We cover all things related to Graft vs. Host Disease and diet. Nutrition is important for everyone, but especially those with GVHD, in order to prevent malnutrition and other issues.  Registered dieticians and nutritionists can be key in a multidisciplinary approach. It's important to keep your entire health care team in the loop so they can be aware of all issues. GVHD can present in many different ways and at any time.

Symptom management is key for Heather and her coworkers.  This can be gastrointestinal issues related to GVHD, or side effects from various medications. Sometimes, this can cause a fear of eating, which can result in unhealthy weight loss and muscle mass. Sometimes food sensitivities can develop, such as one to lactose.  Maybe digestive enzymes are needed, or a change in diet.

Oral care is also important, as GVHD can affect the mouth, teeth and throat.  Maybe softer foods are needed.  Maybe you'll need to stay away from acidic, citrus-ey foods.  Maybe pureeing foods can be helpful.   Heather even mentions a patient who pureed his whole breakfast of sausages, eggs and rice!

Sometimes nutritional supplements like Ensure, Boost, or Orgain can be used to add calories and nutrients to the diet. And when it comes to smoothies, Heather prefers homemade to store-bought so that you can have more control over the ingredients.

Hydration is important for everyone, but especially GVHD patients.   You need to moisturize your system inside and out, and there are many ways to do this besides just water.  Antioxidants found in fruits and vegetables are also key.

Sometimes patients struggle with loss of appetite and other symptoms.  One way to ensure you're getting your needed calories, protein, vitamins, and other nutrients can be to eat smaller meals throughout the day instead of three large ones.  When your GVHD is active, you actually need more calories and nutrients.  And of course, exercise is key.

Resources:

Hackensack John Theurer Cancer Center: https://www.hackensackmeridianhealth.org/en/Services/Cancer-Care?fbclid=IwAR0ANqlbRxjJs_yJVG8YxzS9LW2YefeSBNzmmeJG85UyPZeVMM9KUbepY3Q

National Institutes of Health (NIH) website: https://www.nih.gov/

American Institute for Cancer Research: https://www.aicr.org/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to this season's sponsors:

Pharmacylics: https://www.pharmacyclics.com/

Janssen: https://www.janssen.com/

Kadmon: https://kadmon.com/

Sanofi: https://www.sanofi.com/