Jim Egerton: Life after CML

September 14, 2015

Jim Egerton shares what living with CML means to him.

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The Canadian CML Network

2 months ago

If you haven't of this pretty incredible woman, read her story. She has CML and is on the hunt for a stem cell donor.Part 4: Comfort Dishes of My Childhood “My mom's side is Lebanese and my dad’s is British. I love making Lebanese food because they are the comfort dishes of my childhood. My mom’s family is from a small village in the mountains of north Lebanon, so I grew up with traditional foods prepared the same way for generations. Some of my favourite Lebanese foods are Fthoyer, Rishta, Tabouli, Baklawa, and Zlebya. We often cook with Za'atar spice and eat zytoons (black olives) with most meals! Our Maronite religious background provided many fun traditions, the origins of which have been lost over time. For instance, each Easter we have an egg fight where we bump ends of coloured hard boiled eggs until the last person with an uncracked end emerges victorious. On Good Friday, we prepare a special meatless soup called Muhklutoh and recall the miraculous story of this ‘rock soup’. We also try to outmaneuver each other by saying a particular Lebanese saying on New Years’ morning. The reward for being the first to say this is our “spahetha” (a money gift). My mom always substituted hugs for money and over the years we have become quite creative in trying to be the first to utter our New Years’ Greeting virtually! I also enjoyed belly dancing when I was well. I draw on memories like these when my body rebels against the therapies that are supposed to manage my leukemia. I love my mixed heritage but it has created challenges searching for a matched donor. There are just not enough ethnically diverse stem cell donors, which is a disadvantage to mixed heritage patients because it reduces the possibility of finding a match and receiving a life-saving stem cell transplant.” _________________________ Laura is a patient with chronic myelogenous leukemia who is searching for a donor for a stem cell transplantation. Shown in the photo are Laura and her aunt Joni preparing Baklawa. A fully matched stem cell donor is generally preferred by transplant physicians. However, patients from Middle Eastern and mixed racial/ethnic backgrounds, like Laura, face difficulties finding a suitable stem cell donor, due in part to poor representation on donor registries worldwide. Laura urges all healthy individuals including those with diverse racial and ethnic backgrounds to reach out to their local registry to become stem cell donors. Canadians between the ages of 17 and 35 can register online at: blood.ca/WhyWeSwabMy Battle with LeukemiaCanadian Blood ServicesRoyal Canadian Air ForceThe Leukemia & Lymphoma SocietyCanadian Armed Forces ... See MoreSee Less

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The Canadian CML Network

3 months ago

hello everyone ... so how difficult and frustrating has it been to navigate the vaccines, from timing to side effects?I will be sending more out about this ... but as mentioned earlier, people with CML (particularly those who are stable) are not considered high-risk. However, it seems that every hosp/clinic/pharmacy has a different perspectives. I have heard from people across Canada who are not in the current group to be vaccinated, but they mention CML and they get appts. A couple of people have said they have simply had to disclose the medication they are taking in order to get an appt. And still, there are also places and doctors that don't consider CML high-risk and don't necessarily support classifying CML'ers as high-risk. Whether or not you have access to a vaccine continues to depend largely on your age and where you live in Canada. ... See MoreSee Less

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The Canadian CML Network

3 months ago

hey everyone, in case you are interested in learning more about the impact of delaying the second dose of the COVID vaccine on people living with cancer, there is a zoom call this Friday you may want to join in on.us02web.zoom.us/webinar/register/WN_cz9hpp-yRU-1XJMlQurI0A ... See MoreSee Less

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