Second opinion

Although I had hoped to spend some time today downloading video and pictures of Ellie here, this post will still contain some good news! Today Lori and I met informally with another one of the oncologists who specializes in hematology where we work for an informal second opinion. He spent a significant amount of time explaining the immune system and its mechanics to us since the lymph nodes play a key role in it. Much of it was a little over our heads! There were a few key points that we both walked away with though. I'll try to explain them below, but please keep in mind that this is what we heard and I can't guarantee that in my state of anxiety that I'm getting this totally correct!

1. Although some cancers have clear environmental risk factors (eg. smoking and lung cancer), follicular lymphoma does not appear to be one of those. The oncologist stated several times that Lori did nothing to cause this. So it wasn't something she ate, drank, or was exposed to. Although I work in cancer genetics I can't totally explain this, but I'll give it a shot! When DNA is copied to make a new cell, there are always mistakes in that new DNA. We have built in check points and genes whose job it is to correct those mistakes, but every time DNA is replicated, mistakes still happen in all of us. Some of those mistakes make absolutely no difference in the function of a gene or of a cell, but some make a huge difference depending on where the coding error happened. . The oncologist told us about a specific gene that was mentioned on Lori's pathology report. This gene's job is to help to regulate cell growth by increasing growth. In the case of some lymphomas, when the DNA is replicating there's a dyslexic moment and that gene is inserted in the wrong place right in the middle of the genes that are used to form antibodies. When that happens it causes certain cells to continue growing when they shouldn't, which is of course a problem and ultimately can lead to cancer. This isn't the kind of genetics that I do so I'm sorry if this doesn't make sense - it was totally clear when he was drawing it on a piece of paper today! Let me also say that the oncologist reassured us that this form of lymphoma is not hereditary. Although it is caused by genetic changes, these changes occur in single cells and are not passed on in the family.

2. For those of you reading information about lymphoma on the Internet, BEWARE! We asked about some survival data that Lori had found, which was pretty depressing. The oncologist explained that the introduction of a drug called Rituxan changed the face of lymphoma treatment and it was approved by the FDA in 1999 or 2000. So the survival data out there doesn't include the many people who have taken Rituxan and are doing great. Those numbers will be higher in the future as the benefit of this drug is included in the data.

3. We heard this before but it was nice to hear again - if/when Lori needs treatment now or in the future, the available options (including the one above) have been very successful. There's also quite an arsenal of treatments if one isn't as effective as we would hope.

We left feeling a little more uplifted today. We'll talk to this oncologist again after the staging studies are done and we've met with our primary oncologist for final recommendations. Tomorrow is the bone marrow biopsy so we again ask that you please keep Lori in your thoughts and prayers!