I saw my doctor today for an update. My diagnosis is refractory large B cell lymphoma. It is refractory now because it never went into remission but the cancer is back and growing strong. This is the worse type of scenario. 1 in 4 or 5 people are completely cured. The remission rate was very high though. So it is likely I will battle this my whole life. My doctor has never seen refractory lymphoma. He wouldn't talk about the "what if" if we can't get it under control with this next round. He just said it's very bad.
The next step:
I will be transferred to a Lymphoma specialist at MUSC. My doctor will still stay on my case as a consultant. I am waiting for MUSC to call and schedule an initial consult for the clinical trial I will be on. The trial is not experimental, it's a study between 2 chemo drugs already being used to treat cancer; trying to find which one is better. My first appointment will be early next week and will just be a formality to get me in the trial. My doc thinks I'll get in no problem. There are only 10 people in Charleston that will be allowed in the study.
From there, I will have a chemo infusion in the hospital that will take 3-5 days. I will then be discharged for 3 weeks before starting another infusion. I will have a total of 3 infusions, each with a 3-5 day hospital stay. During my second infusion they will also do a bone marrow transplant (just a blood draw procedure).
After all 3 infusions, I will be hospitalized for 3 weeks while they give me back my bone marrow cells. The stay will be so long because they will do a final large chemo blast and my immune system will be so compromised they will have to build it up slowly.
Mom found the average age for what I have is 60 years old and happens more in men. This is why my doctor keeps saying I don't fit the profile :) for just once I'd love to be average in this area of my life! :)
My doctor said if he was diagnosed with this, he would go through the course of treatment he just prescribed. He also said if at any time during this process it is not working out for me, he will get me up
Ohio State where he graduated and get me under the Lymphoma specialists up there, who he is very confident can help me. He has been consulting with them on my case throughout this whole process.
So the short answer is I'm in the hurry up and wait scenario again. I know that even when my doctor is at the end of what modern medicine can do, my Father who is the Great Physician, is not.
Please continue to pray for me and my family on this journey! :)
The next step:
I will be transferred to a Lymphoma specialist at MUSC. My doctor will still stay on my case as a consultant. I am waiting for MUSC to call and schedule an initial consult for the clinical trial I will be on. The trial is not experimental, it's a study between 2 chemo drugs already being used to treat cancer; trying to find which one is better. My first appointment will be early next week and will just be a formality to get me in the trial. My doc thinks I'll get in no problem. There are only 10 people in Charleston that will be allowed in the study.
From there, I will have a chemo infusion in the hospital that will take 3-5 days. I will then be discharged for 3 weeks before starting another infusion. I will have a total of 3 infusions, each with a 3-5 day hospital stay. During my second infusion they will also do a bone marrow transplant (just a blood draw procedure).
After all 3 infusions, I will be hospitalized for 3 weeks while they give me back my bone marrow cells. The stay will be so long because they will do a final large chemo blast and my immune system will be so compromised they will have to build it up slowly.
Mom found the average age for what I have is 60 years old and happens more in men. This is why my doctor keeps saying I don't fit the profile :) for just once I'd love to be average in this area of my life! :)
My doctor said if he was diagnosed with this, he would go through the course of treatment he just prescribed. He also said if at any time during this process it is not working out for me, he will get me up
Ohio State where he graduated and get me under the Lymphoma specialists up there, who he is very confident can help me. He has been consulting with them on my case throughout this whole process.
So the short answer is I'm in the hurry up and wait scenario again. I know that even when my doctor is at the end of what modern medicine can do, my Father who is the Great Physician, is not.
Please continue to pray for me and my family on this journey! :)