Monday, September 15, 2014 – Day 303 after leukemia diagnosis – Pre Transplant
So we have been contacted by the transplant centre in Ottawa. We have a “consultation” appointment on the 25th of September. The search for a match as already commenced and they should be able to tell us if they have found one by then. From what I have researched, there are many preliminary tests that must be done prior to the transplant to make sure the patient is healthy enough to go through with the procedure. So we really won’t know much more until we have the initial consultation, but the ball is rolling.
What I do know is I have been doing lots of research about transplants and about the “secondary Philadelphia Chromosome”, which I have learned is actually referred to as a “double Philadelphia Chromosome” or “double Ph Chromosome”. It is very rare, so there isn’t a lot of information out there and a lot of the information out there is not easy to comprehend. However, I have found 3 people who are members of the CML support groups on Facebook that also have the double Ph Chromosome factor who have been successfully treated with the TKI Chemotherapy treatments. This has me wondering if Kevin’s medical team is jumping the gun going to transplant. Originally, I didn’t question the necessity to go to transplant. We were told that transplant IS the best option because Kevin’s leukemia was transitioning to the more aggressive phases of CML and would not respond to any of the treatments available by one of the top CML specialists in the country. Why would I second guess that? Well now, after hours and hours of research and chatting with others who have had similar experiences, I am. We at least need a better understanding why the leukemia will not respond and be completely reassured that transplant is the best way to go. So I told Kevin that I will be asking questions at the next appointment. He’s good with that.
We also got a call today to let us know that Kevin’s new treatment, BOSULIF (bosutinib) is waiting for him at the cancer clinic, but he needs to have an EKG before he starts it and then subsequent EKGs for the next 3 weeks. We were told by Dr. Lipton that he will only take this TKI temporarily, just until they are ready for the transplant. But he’s hoping that it will lessen the severe side effects he is experiencing with Tasigna, which are extreme fatigue, extreme chills and sweating, a rash all over his face and neck and head, full body itching, diarrhea, bone pain and weight loss. So let’s hope it makes him feel a little bit better. One of Kevin’s friends from out West is here visiting so he’s up and at it today, which is awesome.
September is BLOOD CANCER AWARENESS MONTH! You may have noticed that we have started a Bloody Awesome Challenge! Please check out the details HERE and share if you can! The challenge isn’t as easy as the Ice Bucket Challenge, but it could save someone’s life!
We are also giving back and hosting a mini Light the Night Walk for Kevin here in Kingston, right on our street! =) The proceeds go to the Leukemia and Lymphoma Society of Canada. If you would like to participate or make a small donation, please visit our team page: http://bit.ly/1wtN9YJ
Thanks for stopping by!