Sunday, March 8, 2009

Where I get some of my reading off my chest

Lately I've been doing Google searches on diffuse large B-cell lymphoma. Apparently, this is an active field of study with a number of large trials currently being conducted. It's interesting to read about how, just in the past ten or fifteen years, it was discovered there are at least three sub-types, with my sub-type (primary mediastinal) typically appearing in young women.

When I first started this reading, I thought one of the sub-types was called "bulky". Bulky disease has a poorer prognosis, and I was glad that wasn't the kind I had. Later, I realized that bulky disease is a tumor larger than 10cm. Mine was 13cm: not heartening. Having a pericardial effusion (fluid around the heart) is also associated with a poorer outcome. Shucks.

Still, the primary mediastinal sub-type has a better prognosis than the other sub-types, with most studies 5-10 years ago finding 5-year survival rates of 70-80%. This despite about 75% of patients presenting, like me, with bulky tumors and either pericardial or pleural effusions (fluid around the lungs). And the drug Rituxam has greatly improved the treatment of B-cell cancers: survival rates up 10-20% since it became part of standard treatment. (Unlike normal chemotherapy drugs, which kill rapidly dividing cells, Rituxam kills B-cells.)

With my good response so far, I'm confident I'll have a complete remission with my chemotherapy treatment. Still, it's sobering to know there's a not-insignificant chance of a relapse: if that happened, my chances of surviving 5 years would be less than 50%.

Exactly what my prognosis is I'm not sure. The clinical trials for diffuse large B-cell lymphoma that include Rituxam have not been completed. Even without the precise numbers, though, the general idea is that I have a very good chance of being cured. And a "very good" prognosis sounds good to me.


Lori of Soulful Studios said...

Hello fellow PMLBCL friend. I am so sorry you have joined the ranks of cancer killers. You don't know me but at 36 I had the same cancer as you. My tumor was 15 cm and i also had a pericardial effusion as well as some other not so nice things going on. Long story short I am here and healthy and cancer free. I'm getting married in 49 days and my business is building. You can do it too. I can share a lot of good info with you if you are interested to save you time and angst including a yahoo group of us. I just wanted you to know there are others of us like you still walking, talking, breathing and raising hell.

Thinking of you and wishing you well. Maybe I will hear from you.


Anonymous said...

Hi, I would love the info on the Yahoo! Group... would really really appreciate it if you could please email it to me at