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

[lovestar_07 at yahoo.com]

May God continue to guide & bless you!

Sent from my iPhone

> On Aug 21, 2014, at 10:16 PM, Jim Ellsworth via Nfbf-l <nfbf-l at nfbnet.org> wrote:
> 
> 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
> 
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