August 31, 2011

My first (and last?) bone marrow draw. Nasty little procedure. When AbJ drills into my pelvis on my lower back the numbing of the lydocaine initial sticks is not sufficient, but then it probably cannot be. The initial aspiration is one of those unique–and not pleasant–little sensations of something happening inside your body that you have never felt before, like when Bob Stephenson removed the abdominal shunt after my prostatectomy. Then the second drill to gain some actual marrow tissue. It is all over pretty quickly and I am sweaty from guarding against the pain.

During the procedure I ask–redirecting my head away from what he is up to–about the SLC assays. Yes, they are in. What cell is it? It is a Mantle cell. So I have Mantle Cell lymphona (MCL). I ask about aggressive/non aggressive, etc. He says it is a hybrid, some characteristics of each. My head immediately wants to know which of which. Apparently it is quite rare, only 6% of NHL. A little black cloud enters the environment.

Wicki has a good (?) page on MCL. Only 15,000 cases in the USA. Fairly new. Uh oh. They don’t yet know what they are doing? Well, apparently they do. The survival data are not so good. This is at least in part because it is often not identified early. 3-5 years is the median. Most recent cases the median is 6 years.  Therapy is often chemo, chemo combined with radiology, and stem cell. Stem cell? Sounds like last resort stuff. The page says that since MCL is so little known its carriers often opt for experimental trials.

One decent ray: AbJ has 3 living (!) MCL patients in his practice. I joke about maybe the valley heading toward a cancer cluster. Gallows humor. Treatment for this one is likely to be more extreme than I had hoped.

They draw more blood. What? I say too many sticks. But this is a new panel. Now they need to identify what cells are present in the blood that relate to MCL. There are some MCL cells that are very aggressive and they want to find out the numbers of those things. Still staging. The possibility exists also of a future PET scan, if the insurance gurus approve. PET is used in MCL cases because it is a better locator than CAT. We have a travelling (Trailer) lab that visits the valley every couple weeks and will be back Sept. 12.

But for now on with life for a few days. I think we get together with AbJ to discuss the assay results and the results of the bone marrow the first of next week. Until then life can go back to a semblance of normal. Jan and I go out to lunch. Yea.