In my case of CML, I was admitted to the hospital and treated with cytarabine, a chemotherapy drug and leukapheresis; a process used to eliminate white blood cells. Not all cases of CML must be treated in this fashion, but because I was diagnosed with an extreme amount of white blood cells in my blood, there were other concerns. When I was diagnosed, I had 382,000 white blood cells; normal range is between 4,000 and 10,000. They needed to reduce the amount of white blood cells in my body quickly to avoid a stroke or other complications. They were also concerned that I might be in blast crisis; a very serious stage of the disease.
Once they managed to get my white cells under 100,000 they sent me home with a prescription of Dasatinib; commonly known as Sprycel. Sprycel is one of the second- generations of a drug that includes Imatinib (Gleevec) and Nilotinib ( Tasigna). These drugs were developed in 1998 and have changed the outcome of chronic myelogenous leukemia drastically. Before these drugs were created, certain death was the prognosis for people that had CML. Since the discovery of these drugs, patients living with CML are actually able to do just that; live. These drugs allow patients to manage their leukemia with the hopes of putting CML into cytongenic and molecular remission. There is no current cure for CML, but there have been many significant treatment advancements in recent years.
The way that these drugs work is by blocking the abnormal protein called “BCR-ABL tyrosine kinase inhibitor (TKI).” The goal is to stabilize the disease and make the side effects manageable enough for patients to lead a relatively normal life. All of these drugs are lifesaving, but also very, very expensive. Currently you must take them for the rest of your life. Along with the side effects, your CML may become resistant to them; thus changing the course of your treatment. None of us know the truly “long term” side effects of these drugs as they are relatively new. Typically the side effects outweigh the benefits. So, for now, I will be taking Sprycel for as long as Destination Access provides it to me and as long as my body continues to respond in a positive manner. Thank God for modern medicine and research!
So many medications have unknown long term side effects, under some circumstances - you just cannot worry about "long term" - you just take them and "hope" it is all ok later, since taking them at all is in the hope that you will BE HERE to even worry about it later... These drugs ARE relatively new, I am shocked and wondering how CML was treated before 1998... My friend was lucky - her brother was a perfect antigen match for bone marrow, that was in 1993... She's been fine ever since... (Well, excuse the recovery period after the BMT when she felt she was in solitary confinement)... She never developed GVHD (HVGD)? - I have always felt that God and luck were on her side, and reading now, I see that I was right... Keep dancing Michele, and yes, thank God for modern medicine. I hope these medications can keep you from "solitary confinement" - but you said your Dr. is not looking at that right now... "Stayin Alive" and LIVING is so much more important that long term side effects... Deal with "that" IF you ever need to... Anyone with your spunk, is going to come through this... With love and so many Prayers -- always, JuliaReplyDelete
As always, Julia...I thank you for your perspective! And yes, I AM truly grateful that we have these drugs available to us because someday there WILL be a cure and I plan on being around when it happens!ReplyDelete
Love to you, my dear friend,
I was diagnosed with ALL. Which I know is very different from the CML. I love your posts. Even though our journeys are a little different I am thankful all the same to have ran across your blog.ReplyDelete
HI Shannon, I am so sorry to hear of your diagnosis, but glad that you are enjoying my journey; Cancer is tricky that is for sure and we all have different journeys to take.ReplyDelete
If you ever want to "rant" please feel free to email me personally: Meeeesh51@gmail.com
I will be praying for you,