Just heard that somebody who went the aggressive route was in complete remission before his second transplant...and then contracted an opportunistic infection with his weakened immune system that led to bacterial pneumonia. He is no longer with us.
Then again, I know people diagnosed after me who went with the "control the disease" approach that are no longer with us, either.
This is not yet a chronic condition like hypertension. This is cancer, and it will kill you if you aren't careful. There are no easy answers.
Treatment related mortality overall for the aggressive approach I took is around 1 percent, but that includes many elderly patients. For somebody my age, it is probably more like 1 in 1000. Those odds are good...unless you are that one. And when you encounter that one, it can be jarring.
I am on a day trip to Cincinatti for work (one night, two days, I suppose). I was cleaning out my carry-on satchel and found some papers that BB printed out for me back in May. At that time, he had six years of post-treatment data for Total Therapy 3. Of 149 low-risk patients in that protocol, not a single person who was in remission at 3.2 years had lost remission in the following 3 years. That is not an accident; it is not coincidence: it is cure.
But there is no choice without some risk.
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I agree with you, Nick. There is risk involved in treating Myeloma- no matter which avenue we take.
ReplyDeleteIt seemed that while there wasn't enough data to suggest the 'slam dunk' protocol, there were treatments choices which were much more suited to my goals. Mitigating risk was only one decision point for me. Quality of life, geography, cost, treatment success rates, patient testimonies, and most importantly, potential CURE, were important factors in my decision to move forward at UAMS.
Like an athlete, I'm trying to not get caught flat footed and miss the boat on the advances that come down the pike. Do I like reading that there may be medicinal alternatives to stem cell transplants? YES! Progress! Would I like to learn that there's a new chemo drug that is better than the one that I'm currently taking? You bet. Do I welcome it when someone battling MM poses tough questions about the aggressive course I'm on? Sure- within reason, it helps me to check my own thinking. I have great trust in Drs. Barlogie and Nair. And they trust me to speak up when I need to.
Your recent posts have been very helpful in reminding me that MM isn't some trifling, pesky condition to ignore. It is serious and precautions must be prudently observed. Meanwhile, there's a lot of LIVING to be done!
Your generosity,honesty and friendship has made my journey easier than it may well have been. Thank you!
All the best for your journey back to LR. Groucho says the secret word is 'Bar-B-Que'!
Sean