Hodgkins Lymphoma Awareness

My Journey Battling Cancer & Graft vs. Host Disease
Fighting for my life each day against the odds



May 2005 Diagnosed Hodgkins Disease - Stage 4b, Nodular Sclerosis (NS)

June 2005 - Started 12 treatments of ABVD

December 2005 - Scan came back tumors were growing

January 2006 - ICE - Maine Center for Cancer Medicine, ME - 1 round

January 2006 - Admitted into Maine Medical Center, ME side effects from ICE

January 2006 - GND - Maine Center for Cancer Medicine, ME - 2 rounds

February 2006 - 5 days of high dose chemotherapy - Maine Medical Center, ME

March 2006 - Autologous Stem Cell Transplant - Maine Medical Center, ME

April 2006 - Tumors growing - 21 Rounds of radiation - York County Cancer Care Center, ME

June 2006 - Scan came back tumors were growing in lung

July 2006 - GND - Maine Center for Cancer Medicine, ME - 2 rounds

November 2006 - 4 days of nonmyeloablative chemotherapy - Dana Farber Cancer Institute, MA

November 2006 - Allogeneic Stem Cell Transplant - Dana Farber Cancer Institute, MA

November 2006 - Velcade, Clinical Trial, Phase I - Dana Farber Cancer Institute, MA

March 2007 - PET scan shows new tumor behind stomach

May 2007 - cGVHD sets in, back on immunosuppressant drugs and Prednisone

August 2007 - PET shows no activity of Hodgkins!

August 2007 - TRIAL & ERROR
                Rituxan, chemotherapy to try to help alleviate cGVHD (4 treatments) - Maine Center For Cancer Medicine, ME

September 2007 - TRIAL & ERROR
                Gleevec, chemotherapy pill to try to help alleviate cGVHD (5 pills) - Body couldn't tolerate, stopped treatment.

September 2007 - Oxygen 2-3 liters for breathing

October 2007 - TRIAL & ERROR
                 Photopheresis - 3x/week for 4 weeks, 2x/week for 8 more weeks -
Brigham & Women's Hospital, MA

November 2007 - TRIAL & ERROR
                Enbrel - reduces the actions of chemicals in the body that are involved in inflammatory and immune responses. It is used to treat the symptoms of moderate to severe rheumatoid arthritis, polyarticular-course juvenile rheumatoid arthritis (JRA), psoriatic arthritis, ankylosing spondylitis, and psoriasis.

December 2007 - Nebulizer with steroid (trying to get steroids directly into lungs.)

January 2008 - PET shows no signs of active cancer, stop Nebulizer since not helping

February 2008 - Stop Photopheresis and Enbrel since there has been no benefit

March 2008 - Palliative Pain Care Management Teams - DFCI & Maine Medical Center

May 2008 - Hospice Care - Maine (At home care)

November 2008 - Hospice Home - Treatment of Bronchitis

March 2009 - Admitted into MMC by ambulance (GVHD flared up, immunosuppressants are increased)

"Kicked out" of hospice since I didn't die! This is a good thing. Insurance purposes.

 April 2009 - Visiting nurses starts in home. Physical therapy gets me moving around more. I started to feel better about my situation.

August 2009 - I reached a plateau and was doing well, but became exhausted so I took a break.

September 2009 - Met with my pulmonologist and I did pulmonary function tests and a "6 minute walk test." My lungs are very damaged and NOTHING will help them. My breathing tests showed they had worsened since my last tests. The walk test showed that while I am walking with a walker, slow-paced I require 8 liters of oxygen continuous flow to keep my oxygen saturation in the high 80s low 90s. Very exhausting. I pushed myself too.

Pulmonary Rehabilitation - Southern Maine Medical Center - Maine: 10 week class; 2x/week
Unfortunately did not complete due to getting bronchitis for 6 weeks




ABVD -Adriamycin, Bleomycin, Vinblastine, Dacarbazine

ICE -Ifosfamide, Carboplatin, Etoposide

GND- Gemzar, Navelbine and Doxil

cGVHD- Chronic Graft vs. Host Disease

TRIAL & ERROR- My case of the cGVH Bronchiole Obliterans is unique. Doctors have never seen a case as severe as mine (no medical books to turn to) options are slim to try and improve the situation. All protocol treatments were exhausted. That's when clinical trials are started.

PHOTOPHERESIS - also known as extracorporeal photochemotherapy (ECP), is a form of apheresis therapy.  It  involves light-activated treatment of circulating blood cells outside the body.  Photopheresis may act by modifying the patient's own immune response to his/her disease. On this basis, the therapy is being extended to graft vs. host disease, organ transplantations, and early scleroderma and other autoimmune diseases. http://www.lymphomation.org/photopheresis.htm

PALLIATIVE CARE - form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than halting or delaying progression of the disease itself or providing a cure. The goal is to prevent and relieve suffering
and to improve quality of life for people facing serious, complex illness.

HOSPICE - quality, compassionate care for patients struggling with terminal illness. The principal goals of hospice are enhancing the value of life by controlling pain and any other physical symptoms, maintaining patients' dignity and respecting their wishes and providing emotional and spiritual support. It is a family-centered approach that includes a team of doctors, nurses, social workers, counselors, and trained volunteers.