I returned from Byrdland Tuesday...to those of you who do not know- that is my term for the James Cancer Center at Ohio State University- Columbus Ohio... and home of Dr. John Byrd- world renowned CLL specialist...I have been visiting Byrdland for several years now to try and keep my CLL (Chronic Lymphocritic Leukemia) in check. He is without a doubt a trustworthy man who I put all confidence in.
It was great being in the north with the humidity here sometimes as much as 97% (how close to rain can you get without having it???) Denise and I drove up to Cleveland and spent some time in the Metropolitan park there- Rocky River.
Looks like I may be spending some more time up there...
I am once more looking at the BMT train... Dr Byrd has suggested it once more- putting my bladder cancer as a secondary issue... I guess I am running out of viable options... Truth be told, I feel pretty good--- just a bit fatigued lately...
I am approaching the BMT with the same style I have approached everything in my life... moving forward with a watchful eye to determine if He has other plans for me...and willing to make adjustments accordingly- I get in trouble when I try to go my own way...sort of like Jonah.
Dr Byrd has suggested a phase two trial Cal 101 to reduce the lymph nodes... it is a trial that is also being conducted at Moffit- so there is a chance I can do it from Tampa...
I should have more information next week...
Randy, I've read many of your posts on CLL Forum with interest. My husband travels a very similar road as you travel as it relates to CLL. He just failed Treanda miserably after 2 rounds. Being sent to Emory in Atlanta for another consultation with BMT specialist (this will be the third time because Tom has always declared he doesn't want a transplant). I keep a journal for family and friends at http://www.caringbridge.org/visit/thomaslussier You may find it an interesting read. God bless you and your family. Nancy Lussier
ReplyDeleteNancy,
ReplyDeleteI visited Tom's Blog and suggested Naltrexone 500 MG as a possible solution for the itching...
I too have resisted a BMT... but I am now pushing forward until something happens or I get pushed off again...
I will follow Tom's Blog... Good Luck at Emory...
Thanks for the suggestion of Naltrexone 500 MG. I'm calling the dermatologist today. Tom's onc indicated he'll need chemo to reduce the size of lymph nodes prior to BMT. I guess we'll find out what the BMT doc suggests, but I'll ask about the phase two trial Cal 101. Don't know if they are doing that at Emory. My dad was at The James in 2000 for cancer treatment. My Mom sings the praises of The James. My dad passed in 2000, but he had great care in Columbus. I'm originally from Ohio. Tom and I lived in Lake Placid FL for over 16 years before moving to NE GA in 1989. Never missed the Plant City Strawberry festival. Do they still have it? God bless you in you and your family as you embark on another leg of your CLL journey. Nancy
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