Sunday, December 23, 2012

8 Down & 4 To Go

I have finished my 8 weeks of Azerra (Ofatumumab) and now get 5 weeks off.  All in all the treatment was a non event for me; it just takes a long time to get.  It is usually an 11 hour day, which is probably why I am tired after the infusion.  I have no real side effects with the exception of some slight numbness in my fingers and lips and a slight cough , which I always had with Rituxan.  So I get to enjoy Christmas, the New Year, and a cruise to Mexico with the Barden side of the family in mid January.  Life is good.

After the ASH (American Society of Hematologists) 2 weeks ago, there is a lot of encouraging news of the drug front.  Ibrutinib, which is the drug in the other arm of my trial, has had a 96% progression free survival on patients 22 months out.  This is nothing short of amazing.  The drug is a pill, taken daily, and has very few side effects, all of which can be managed.  Here is a link to a talk by Dr. John Byrd from OSU talking about the Ibrutinib trials.  http://www.onclive.com/conference-coverage/ash-2012/Dr-Byrd-on-Ibrutinib-in-CLL
I am now on a monthly schedule and will get 4 more doses before I complete the trial comparison in April.  Even though my blood numbers are all in normal range, they are at the high end, and have not dropped to the low levels that I experienced in the other trial.  I did have a doctor exam on Tuesday and he said that everything looked good, but that he would have a better idea after my 5 weeks off. 

This is somewhat of a two edged sword.  If I completely respond, then I won’t need the Ibrutinib.  If I do respond, then I am not proving that drug A is better than drug B, which is the whole point of the study.  And if I don’t respond that well, and/or if I relapse quickly, then I will need treatment again, and hopefully they figure out a way to get me the drug A. 
Other than a few “over 65” medical issues, I have been feeling fine.  Everything is on track for a Family cruise in January, a trip to Seattle in February, a new grandbaby in April and a wedding in July.  All just part of the normal Evans family life.

Please keep my life long friend 'Tall Tom' in your prayers as he gets an experimental stem cell lung treatment at the end of December.

Wishing everyone a Merry Christmas, believing that there is a reason for the season, and a Healthy and Happy New Year.
Terry

1 comment:

Dai said...

Thanks for your info on Ofatumumab Trial. I am on the Resonate Trial and about to have my sixth infusion on Wednesday. I too have experienced numbness in lips and fingers. I did have a reaction on the first occasion but nothing since. I had an eye infection last week but they cleared it with oral antibiotics.
Best wishes
Dai