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more rechecks this afternoon

Posts: 1914
Joined: May 2012

Hey everyone,

Rechecking the lung and chest wall down at Masonic today.  And it's suppose to snow.  Alrighty then, should be a fun trip.  I also want to bring up another issue that is important in understanding our dx's.  TUMOR PROFILING  This shows our specific DNA and RNA that could match up tx's in the future that could help us fight our specific dx's.  There isn't anything near me to do this as my dx is rare and not studied (researched) in our state.  TOO FEW.  But with the help of accoi I did find a resource to do it.  It is very exspensive, but some insurance companies will cover the labs services.  I'm a bit shook that this isn't offered as an option in the beginning of our journeys.  The more I research, the more I'm seeing advancements in this specific area for more personalized medical tx's.  I know in the beginning all I wanted was the cancer gone.  If I can explore and understand options for us and actually muddle my way through it, I feel it may help others in finding a cure.  This is different from histology (tissue type) which is important to know also.  Well enough of the medical lingo for this morning.  Will let you know how all of this progresses and what if anything this will help.  Have a great day.....as I will !    Katie     

Skiffin16's picture
Posts: 8286
Joined: Sep 2009

Living in Polk County Florida, I thought you said More RedNecks...., LOL... susel

Thoughts & Prayers for a great day...


Ingrid K's picture
Ingrid K
Posts: 813
Joined: Mar 2011

Good Luck Katie on your re-CHECKs.

thinking of you.



wolfen's picture
Posts: 1313
Joined: Apr 2009

Good to hear from you and best of luck with today's fun afternoon. We'll be meeting with the MDA Rad Onc this afternoon to discuss plan for lung tumor. More fun, also.

Take Care,



Posts: 1914
Joined: May 2012


Hope your day goes better than mine started...lol !  I'm home safe and warm.  Please let us know how things go !   Katie

NJShore's picture
Posts: 423
Joined: Nov 2012

Katie, Wolfen,

Luck to you both today! Drive safely!


phrannie51's picture
Posts: 4672
Joined: Mar 2012

Gawd, remember the good old days when seeing the Dr. was at best a once a year deal?  I admire you for all your researching....I'd be a lost pup trying to find this stuff out from scratch.....thank you for forging the way.  What is accoi? 

Hoping you have a productive day today, too....Wolfen!! 


Posts: 1914
Joined: May 2012

Hey everyone,

Didn't even make it 30 miles from home and ended up turning around.  Our back roads were rotten, made it to a state hwy. that was just as bad.  So called them, gonna have an xray done at the local clinic.....sent to them.  And also a phone consult with my medical oncologist.  I remember T saying something about coming to our state and saying it was stupid cold.  I love my state but I've gotta agree with him.  We usually get the snow in March, little early.  I'm doing really good, and getting spunky again.  Hopefully my onc will agree w/the H/N guy, and I won't have to go back til May now.  Keep your fingers crossed !  Oh P...ACCOI is adenoid cystic carcinoma org. international.  They have been a god send to me with their knowledge on my dx.  I think that all H/N dx's are important, so any and all information I find that could help us all, I will share.    Katie

sassysrice's picture
Posts: 117
Joined: Nov 2012

Katie Hope all went well..thinking of you.

That research sounds interesting, thanks


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