4 Down 8 to go!

I just wanted to send out a quick update after my first month on the Trial.  I have had 4 weekly infusions and so far all the results are positive.  I have 4 more weekly infusions and then 4 months of monthly infusions.  So if all goes according to plan, I will be done in April. 

So far the only real issues have been the length of the infusions.  They take between 5-7 hours so it winds up being a very long day.  I have not had any infusion reactions, which are pretty common with this drug.  I have also not had any post infusion reactions with the exception of being a little tired for a day or so.  I did wind up getting a cold after week 2 and I am just now getting back to normal.  I don’t know whether it was lengthened because I was in treatment, because I have a compromised immune system, or because it was just a really bad cold.  I did start preventative antibiotics just to protect myself from a more serious infection.

I did have a 4 week check by the doctor and he commented that all my blood numbers are moving in the right direction, and my nodes and spleen have shrunk.  He did mention that the most dramatic results will be in the first 8 weeks, and after that we will probably not see much movement.

All in all it has been a boring first month, so let’s hope the remainder of the treatment goes as smoothly.

Terry

It has begun

On Tuesday I started the new Clinical Trial.  As you may remember the trial consists of two different arms with one being a pill (the one I thought I wanted) and one being an infusion.  By random draw I got the infusion.  The first infusion is now over, and I only have 11 more to go.  End of short report.

Before I could begin the trial I had to have a number of tests, sign paperwork, and be 'approved'.  All of this was done in the last two weeks.  Last Friday I got the word that I was accepted and which arm of the trial I would be in.

Tuesday turned out to be a LONG day.  Over 15 hours door to door.  I first had lab work, then a doctor’s appointment, more lab work, the pre-meds, then the infusion.  The total infusion time is about 7 hours.  At first I was a little disappointed that I got the infusion instead of the pill, but after talking to Dr. Kipps, I think that I will have a good response to this drug.  It is called Ofatumumab, or Azerra.  It is a monoclonal antibody like Rituxan is, but it is a second generation of the drug.  It is approved for use in CLL so it has been around for a while and even though there are side effects associated with it, they can be managed.  Tuesday I got what they call a TEST dose.  It was only about 1/6 of what I will get in subsequent doses.  They want to make sure that you don’t have a reaction to the drug and that is why they give such a small dose and give it over a long period of time.  My dose next Tuesday will be 6 times as much and given over a shorter period of time. 

I will get a weekly dose of this for the next 7 weeks and then I will get a monthly dose for the following 4 months.  So the total time will be 6 months.  We are not quite sure what happens after that.  There is some talk that the pill drug might be made available to those patients that need it.  Obviously if all my counts, scans and physical exams show I am back to normal there would be no need for the drug.  But if at some time in the future I would relapse, I may be first in line to get the pill drug, called Ibrutinib.  The main goal here is to buy me some more time and not burn any bridges for future treatments.  I think the Ofatumumab will accomplish this.

I have had very little side effects from the test dose and the nurses all expected that because of my past experiences with Rituxan I wouldn’t have very many with the Ofatumumab either.  The measure of how well I am doing can’t be really verified until another CT scan and a bone marrow biopsy.  But I think they will know in a few weeks if I am responding.

Thanks for all the well wishes and prayers, they are uplifting. 

Terry