October 26, 2011 - Initial Lymphoma Test Results

It was an informative day.  First the not so great news, she has more lymphoma in her liver than the ‘expert doc’ has seen in a long time and she has more lymphoma overall than he has seen in a long time.  She is the first person he has seen that had the lymphoma lesions in both her liver and her bowel.  Her blood marker for lymphoma is 3 times the normal.  All of this in about 2 months time.

That is enough not so great news, now for the good news!  We were able to get the PET scan done today and it showed the only cancer she has is in her liver and bowel.  If she had another type of cancer it would have also showed up.  Her heart is doing great, she had an echocardiogram and it showed her cardiac ejection fraction at 69%, normal is 50 – 70% and her latest biopsy showed no rejection!  Because she had her PET scan today they were able to move the Rituximab infusion to tomorrow instead of Friday.  What in the world does that mean?  Well we call it chemo but the medical world calls it monoclonal antibody therapy that is given by IV, not chemo.  It is given every week for 4 weeks and the first session takes 6 – 7 hours so they can take it slow and watch for the inevitable reactions.  Fortunately the common reactions are slight fever, chills and shivering, all of which are tolerable.  If the reactions get bad then they slow down the IV.  Once she is done with the 4 sessions then she will get a ‘booster’ IV every 2 months for a year.  Once she is lymphoma free for that year the odds of it coming back are incredibly remote.  They may start to see results after just two weeks!  Also it is better for the lymphoma to show up early, in the first year, than later.  They get better results with the early onset of it.  They are also reducing her immunosuppresion which should also help.

I was surprised by the description of how this ‘monoclonal antibody therapy’ works.  “Rituximab is thought to attach to the CD20 receptor and causes the tumor cells to disintegrate (lyse).”  Cool!  And for those out there who are knowledgeable about amyloidosis and it also being a monoclonal cell it is completely unrelated and they have no effect on each other.

She is still sleeping a lot since she also has mono from her new heart which takes care of the whole mismatch that she had which is the root cause of the lymphoma showing up.  Her digestive tract issues still exist and the severe cramping has gotten better.  The sores in her mouth are completely gone.  She still does not have much of an appetite so she is also using Ensure to get more calories in.  Of course the standard Mayo diet isn’t helping, you know the Mayo diet, your first meal of the day is at 6:00 PM due to the tests that require fasting and the number of appointments each day your first break for food is dinner.

Having said all of the above we seem to be getting all the rare diseases and rare side effects but we are fortunate in that they are detected early.  Her very unusual presentation of amyloidosis with the lump of it in her neck got her diagnosed quickly as opposed to a lot of people who spend years getting diagnosed.  If she did not have the diarrhea and stomach cramping because of the lymphoma in her bowels we would not have know she had it until it was much further progressed and her liver was completely shot.  So we do feel fortunate in unusual symptoms since they tip us off early that something is wrong. As a magnet on our refrigerator says we do not hope for miracles, we rely on them!

That is all we know for now, tomorrow is the first non-chemo chemo and she has a bone marrow biopsy in the morning (fasting of course).

Thanks for checking in!