Hi Tina, you’ve had a heck of a day. I know this isn’t the news you were hoping for but you have options for a long and happy life ahead of you. Your chronic lymphocytic leukemia, as you’ve so perfectly said, pretty much trashed your marrow. Bone marrow is the home of the immune system and when it becomes completely compromised, so does your health on every level.

You now have the option of a valuable treatment ahead of you which will potentially save your life, giving you hundreds of sunsets and sunrises, holidays with families and friends…the gift of time…the gift of hope.
In doing a little research, Ibrutinib is very much the standard treatment for CLL. It’s a a medication designed to stop the progression of CLL. As with any medications there are potential side effects but most people experience very little. The 40 year old young father who lives next door to me is on it and doing really well. You’d never know he has CLL.

You’re fortunate in that you’ve had a significant time span where there was no need for treatment. CLL takes many years to develop and get to the point where it is no longer safe to delay being proactive. I had AML with several mutations. I had no time. I was diagnosed in the hospital the night I was admitted and barely made it to the next morning. The subsequent chemo I was on, along with abrogating meds, the bone marrow transplant and all of those meds I would gladly have exchanged for simply taking one medication. ☺️ We don’t always get the luxury of being able to decide when and how we change our lifestyles.

We’re often our worst enemies when it comes to making changes and facing the unknown. You’re used to your life as it is now. But within 3 months it is inevitable that you will be asked to make change if you want to have any chance at longevity. If you don’t start the treatment, you’ll decline in health and will eventually become quite ill. If you do start your treatment, you’ll have a chance for many more healthy decades! And it’s also better to begin treatment before the disease progresses to the point where it can’t be managed as easily.

A second opinion is always an option. Do you feel a level of comfort and confidence with your oncologist? If so, I think you can trust her judgment on the decision to start you on this medication. If you experience side effects there are other meds available. Ibrutinib has been used for several years with statically excellent results.

So my suggestion is to go into this without fear and dread. But keep the positive thought that this is going to extend your life! Your current lifestyle may not even be interrupted while taking this medication.
I’ve been to heck and back with statistically bad odds in the beginning. I’m living proof there is better living through chemistry. LOL. And I’ll continue to be here for your spot of therapy. ☺️

What is it you fear the most?

Hi @tinagibson, it’s been quite a long time since we’ve chatted. I wanted to do a little followup to see how you’re doing with your CLL and what treatments are working for you?