pjules1963

I am 50 years old with two grown children aged 24 and 26. It took over 4 years for me to be diagnosed with stage IV Classical Hodgkin's Lymphoma (HL), a rare blood cancer of the lymphatic system in December 2012. Despite Hodgkin's Lymphoma being the "good cancer" I did not respond to first line chemotherapy and my disease progressed. Now classified as Refractory HL it is not longer curative. In order to extend your life chemotherapy and biologic therapies will need to be done for the rest of your life. I refused stem cell transplants and salvage chemotherapy with the exception of palliative treatment. I was given only two months to live without treatment in May 2013, but this disease is very unpredictable and can take you very quickly, or as I found out you can languish in discomfort for many years. Symptoms for HL are plentiful, and because of this almost all patients seek treatment. My reason for this blog is to list a full scope of the symptoms including some very strange syndromes. The documented symptoms are from those that are heavily treated so they suffer more with symptoms from the treatment and not the disease. When I asked my doctor how I would die, he was not sure since most people die from cumulative effects of chemotherapy. I will provide my reasons for not seeking treatment and some information on living with and treating those symptoms. I will also share some links to some good blogs that detail years of treatment and stem cell transplant experiences, a terrific facebook group for Relapsed and Refractory Hodgkin's Lymphoma, and some of my favourite links to medical information. I find there are enough blogs and books that detail what it is like to go through chemotherapy and radiation so my information will be very limited. I hope if you are newly diagnosed you will never have to hear the words Refractory or Relapsed, but I was glad I had investigated stem cell transplants before it was discovered that I needed one. When dealing with Cancer you are often forced to make decisions very quickly and I think it is better to be prepared and educated.