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updates (NED ! for ME)

Posts: 1914
Joined: May 2012

Hello everyone,

I had 6 mo's scan done.  Very good news given this morning.  NO EVIDENCE OF DISEASE !  I am feeling so blessed right now !  Unrelated lung issues continue, but learning to accept my limitations and rearrange my thinking on how to live....(love that word) with 23 % lung function. 

My brother had all his teeth removed a few days ago.  Prep for his upcoming tx's.  Our family doesn't have great luck with good teeth.  He is staying positive, and asking lot's of questions.  I have shared alot of your experiences with him.   Our dx's differ, but medically and emotionally pretty similar.  He will start tx's the early part of May down at the V.A. in MPLS. 

The VFW in their hometown has come together for them.  It made my heart smile with the compassion they are receiving.  My brother isn't one that accepts generousity very easily.  He would rather be the one giving, and usually is.  It just verifies for me that we NEVER EVER walk this road alone. 

I have been reading all posts.  And if I haven't responded it wasn't that you all aren't in my thoughts and prayers, because you are !  As my brother progresses w/tx's I'll let you know how he is doing.  He is a strong man, and has a loving wife walking beside him.  Hugs sent out to all !     Katie and Rolie  

Steve5's picture
Posts: 147
Joined: Oct 2013

YES !!!!!!!!!!!!!!!!!!!!!! That is great news - right back at you, thoughts and prayers and live!!!!



Posts: 702
Joined: Mar 2014

..the good news we've had today. Delighted for you and the best to your brother. I start next week and will be thinking of you both from the other side of the Atlantic.

CivilMatt's picture
Posts: 4303
Joined: May 2012


What good news for you, a happier NED you will ever see.

I am glad your brother is in good hands.  If he is emotionally similar to you, he should do well,

Best always,


debbiejeanne's picture
Posts: 3095
Joined: Jan 2010

katie, i could not be happier for you!  NED is absolutely wonderful.  i'm sorry your bro had to lose his teeth, so has to be hard.  good to know he is staying positive, he gets that from his sis.  i think our emotions are always pretty much the same regardless of our type of cancer, it still takes a toll on us.  i know your bro will come thru this as he has you for his sis and you are one hell of an example.  i am keeping you both in my prayers.  please keep us posted on your bro's progress,

God bless you,


jim and i's picture
jim and i
Posts: 1788
Joined: May 2011

So happy to hear you got NED. May you have many more.


Posts: 76
Joined: Jul 2012

NED that is very good news! I am really happy for you.  If I remember correctly your brother has tonsil cancer?  I am 18 months out from that.

If you have any questions please let me know. Glad you are well.

Posts: 1914
Joined: May 2012


I'm assumming they're considering it SCC HPV+.  They haven't found a primary.  He had 2 lymph nodes in his neck that came back positive for this during pathology.  The ENT was very knowledgable about HPV+ H/N dx's.  Which was a relief to hear.  The plan so far is chemo 1st day with the rads.  Chemo 1 day at 3 week of rads. then chem 1 day the 6th week of rads.  (of course 33 tx's of rads throughout)

I am so relieved to hear I can ask questions on here for him !  I told them both (my brother and his wife) about everyone here, but they just want to get on with the plan of attack and get it over with.  I thank you so much for your offer to help with questions !  Hugs sent !  Katie

luv4lacrosse's picture
Posts: 1410
Joined: Jul 2010

Katie, this is great news, I'm getting Cisplatin as I type this, and your good news made me smile.



Posts: 1914
Joined: May 2012

I'm smiling like a nutcase myself !  It's been a long hard walk, but for today I stand w/no cancer showing !  My brothers chemo will be the same one.  I think about you and your family and continue to pray things all work out !  I will only expect the best for you and nothing less !  Hugs sent !  Katie

PJ47's picture
Posts: 375
Joined: Sep 2013

I sounds as though it is very hard for you due to your brother's illness.  Hopefully he will call on our site when he is needing to.  

Blessings to you,


Grandmax4's picture
Posts: 709
Joined: Dec 2011

you have been one of my inspirations since I joined this "club". It's so awesome to hear that you heard NED..stay strong and ask away, we need you on here..we promise to walk the walk with you

wmc's picture
Posts: 1792
Joined: Jan 2014

Congratulations on the good news  NED

Hondo's picture
Posts: 6643
Joined: Apr 2009

Very good news indeed to here you and Ned are together, J . Sorry to hear about your brother but he sounds like a strong guy and if he is anything like you he too will make it through this door that some of us must pass through in life.

God bless you both

Tim Hondo

fishmanpa's picture
Posts: 1216
Joined: Jan 2013

Great News!

Positive thoughts and prayers


Posts: 839
Joined: May 2013

I am so, so happy to read that you are NED!  This has made my day!!  Please keep us posted on your brother and he is definitely added to my prayer list. 

patricke's picture
Posts: 498
Joined: Aug 2006

Hey Katie,

Congratulations on the NED finding, that's tremendous, let's keep them coming!  I'm sorry to hear that you are having to adjust to a new normal of 23% lung function, but we/you are resiliant, and always do what needs to be done to make the best of the bad situations that we/you are smacked with.  Best wishes to your brother for a most successful outcome from his treatment.  A bouquet of Spring hugs back atcha...........*


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