[Nfbf-l] News about me and my two and a half year battle with cancer

[Jim Ellsworth]

Everyone,

 

I really want to thank everyone for your thoughts and prayers.  I especially
want to thank my friend Sherri Brun for diligently posting the updates to my
progress and my set backs.  I couldn't have done it without all of your
support and God's wonderful blessings.

 

I do need to tell all of you that the battle isn't in any way over.  They
will need to monitor me to make sure the drug is continuing to do what it is
designed to do and to make sure I am still in remission.  As you have read
the drug could stop working at any time but in actuality they really don't
know what it will do because there is only about two and a half years of
study that has gone into it.  The FDA authorized a fast track series of
tests on the drug before it was approved back in November of 2013.  I
provide monthly reports to the company that makes the drug to help them
gather more knowledge about the medication including what side effects I am
experiencing etc.  Fortunately I have tolerated it pretty well so far with
only minor side effects of some bone and muscle pain, increased cramping of
the lets and hands, and a rash.  Probably the most annoying side effect is a
cough I have developed.  Upper respiratory problems are common place with
this drug.  I am being treated for that now.  The cancer and chemo therapy
has caused nuropathy mostly in my feet with some in my hands though I can
still read braille.  The pain has been controlled with Oxycodone which is an
addictive drug but fortunately I have only needed to take it in small
amounts so getting off of it shouldn't be to hard when that time comes.  I
will be seeing a pain management specialist this coming Monday for the first
time and he will determine how I will control the pain.  I am kind of hoping
for some kind of a patch that I can wear round the clock instead of taking a
pill every 6 hours or so.

 

The battle will go on and I will continue to fight.  I am so thankful for
this new drug I am on and new treatments are being developed as I write this
so the future holds promise for me and others who suffer from cancer of
which there are so many kinds.  By the way, what I have is pretty rare in
the grand scheme of things.  There are less than 5,00 reported cases of
(MCL), Mantle Cell Lymphoma in the uSA and when you think about it that is a
very small number.  Often times when a particular disease has such small
numbers very little attention is paid to it so development of treatments are
slow to come but it hasn't been that way with MCL.  Somehow there is lot's
of research going on with new drugs and treatments coming along quickly.  I
pray it will continue that way.  

 

Well, thank you for allowing me to share a little info about me and my
history so far with MCL.  We have joined the Blind Cancer Survivors Division
of the NFB so we can contribute what we know and learn from others.  I am
hopeful it will be a great learning experience.

 

Thank you,

Jim Ellsworth