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Saturday, December 31, 2016

ACOR® ♥ MB* ▶ #SocialCurrentSee®

▶ Gradually, but surely, we are now archiving MyJournal posts in our G+ collection. Follow us there.
▶ I appreciate the comment stream that appears in my email inbox daily from the source, *ACOR, the "listserv" location for a large forum of MCL survivors  One of the most prolific contributors here is a survivor named Max Wood.  He received the following appreciation message/reply from me today: "You have provided about the IVIG and IgG topic since this has been a recurring issue for me post the 2006 DX for MCL and the 2007 aSCT.  

▶ "Generally, I have needed to have IVIGs at 6-month intervals post transplant, but have actually needed the infusions three times in the last three months while dealing with a prolonged bout of acute bronchitis, the longest, continuous siege of this condition of my entire life (now 68) After three trips to the City of Hope Medical Center ETC and my primary oncologist, the last trip finally provided a cocktail of RX that has done the trick to clear up the bronchitis: 1) Ibratropium Bromide nasal spray; 2) Prednisone, a steroid; and 3) Benzonatate, a cough suppressant  The nasal spray seems to be the most effective of the three  Just getting the bronchitis DX proved to be a challenge!

Reality has Dee Dee and me facing the fact that those IG levels need constant monitoring and we also need to do whatever we can to guard the immune system, a task made somewhat easier in our retirement years with the control to public exposures that we could not always easily control during those work year Nevertheless, the life of a hermit is not always possible either.
▶ This reply was prompted by the following comment that Max Wood posted to the ACOR message board:
▶ "After I completed 6 rounds of R-CHOP in August of 2014 my onc put me on monthly infusions of IVIG.  Before chemotherapy I would have one or two very bad bouts of upper respiratory infections a year.  Since I started chemo and moved to IVIG two and one-half years ago I have never had so much as a sniffle.  I went off of IVIG in September of this year at the same time I completed 2 years of R maintenance and thought I would not need IVIG again.  I was wrong.

▶ "I did need it and the levels on my lab report  from September to December went from about 850 to 450.  I could tell, too.  I did not get sick but came close several times over the last month.  What is close?  I could feel it coming on.  I was still seeing my onc for monthly labs, so we knew it was time to start treatment again.  In fact, way over time.  I had my "tank filled up" as my onc calls it about 10 days ago and can sure tell the difference.

▶ "I decided to research the causes of of low IgG and the impact for us.  For those who have infections on a routine basis and/or catch about everything that comes along it could well be low IgG, as many of us know.  From what I have read at least two of the causes for us are our NHL disease (Non Hodgkins Lymphoma - lymphomas that affect the B cells) and Rituxan (which also impacts B cells).  Actually, super low IgG counts can kill you.  That is, the infections can easily turn into pneumonia which can be deadly for those with an already weakened immune system. So, inherent in our disease is a major impact, even if we are in remission, to our immune system.  That is also true for Rituxan.  Even though you may no longer be on R the damage it may cause to your immune system may be lasting (you pick your poison) along with the lymphoma.  My local onc indicated that most of his NHL patients stay on IVIG for life.  I tried to come off, but it did not work.

▶ "One more point about the therapy.  It takes from 2 to twelve weeks for a treatment to begin to work.  And, the treatments should be scheduled four weeks apart.  The most common treatment is a three hour infusion but there are newer alternative subcutaneous treatments that provide as good or perhaps better treatment."
* ACOR = Association of Cancer Online Resources

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