[Nfbf-l] most recent update for Jim Ellsworth

[Sherri]

Good news!
Good morning. On Monday, January 27, we saw Dr. Sotomayor. His plan is to 
put Jim on Ibrutinib (trade name Imbruvica); which, Jim actually started 
yesterday morning. For those interested in reading about this drug and its 
side effects, visit: www.imbruvica.com He will take the oral chemotherapy 
daily and around six weeks or thereabouts, he will have another PET scan to 
see what progress is being made. Dr. Sotomayor is not ruling out the bone 
marrow transplant. After Jim has taken a round of the Imbruvica, he would 
also like Jim to redo the pulmonary test. As you may recall, this opinion 
differs from what we were told by the transplant doctor. With this bit of 
hopeful news, Jim has been using his spirometer a few times a day. As this 
medication is so new, for the duration that Jim is on this med, he will be 
closely monitored by his doctor and followed by Pharmacyclics, one of the 
developers and promoters of the drug. For the next couple of weeks, he will 
have labs drawn three times a week to watch his blood counts. Afterwards, 
labs will be reduced to once a week, I believe. This upcoming week, he will 
be seen by a physician's assistant in Dr. Sotomayor's department. He will 
have a follow-up visit with Dr. Sotomayor himself on the following week. The 
idea is that Jim will take the oral chemo and we will see if he's able to 
pass the pulmonary test this next time. If so, and all of the other 
requirements for the BMT are met, Jim will be back on for the BMT. However, 
if he's unable to pass the pulmonary test, Jim will continue on the 
medication so long as the side effects are not endangering his health; and, 
as long as the medication continues to work. Remember that there is only two 
years of data from the clinical trial to go on. Much is still unknown with 
regards to long-term use. Jim is Dr. Sotomayor's first patient to be placed 
on Imbruvica. There is another doctor in the hematological department who 
has also prescribed the medication to one or two patients. When Jim is asked 
about how he feels about this new therapy, he will tell you that he is 
excited about it. It is just four capsules taken at once, once a day. It 
seriously beats having to go to the hospital and having to undergo 
chemotherapy infusions. Most common side effects are diarrhea, low blood 
counts, loss of appetite, fatigue, etc. This is pretty typical of many 
chemotherapies. There are of course more severe side effects listed; which, 
I will not mention here. The percentage of those who experienced the more 
severe ones is small; and, we have been given instructions of symptoms to 
watch for with regards to them. I will conclude this update by asking 
everyone to please pray and send positive thoughts Jim's way as he starts a 
new phase of treatment to continue battling this rare disease. As always, we 
are hopeful and positive. Our prayers go out to all of you who are braving 
the extreme cold. We also pray for those who too are battling an illness or 
have a family member or loved one who is battling illness. "Til next time. . 
. Kim
Sent from CaringBridge iPhone App


Sherri

Character is the side of yourself you choose to show the world.
Integrity is what you do, what you say and how you act when you think no one 
is paying attention.
Sherri Brun
NFBF Newsline Chair
flmom2006 at gmail.com