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more good news

illead's picture
illead
Posts: 834
Joined: Aug 2012

We got back from Houston a week ago and just wanted to tell you that Bill is still in remission,  His report is NED.  At our local cancer center when he reached remission the first time, they called him the Miracle Man, after geting on Ibrutinib he was called the Million Dollar Man, now they are just calling him Ned Laughing.  Anyway Dr. Wang at MDA believes he will be in remission for a good long time, he was smiling from ear to ear.  He has a patient who has been in remission for 8 yrs.  The other good news is that we don't have to go back to Houston untiil he relapses again and then Dr Wang says he will put him on the Car-T cell therapy and with time down the line it will be improved with less toxicity.  He will remain on Revlimid/rituxan with regular petscans but he can do it at our cancer center.  So it has been a rough year, 2 relapses since April plus all the side effects from Ibrutinib and the pet also shows chronic sinusitis which he has been suffering with.  Dr. Wang put him on strong antibiotics which he is on for 17 days but still suffering, also a sinus wash and sudafed from behind the parmacist's counter.  I can't say I can put this quite on the back burner this time, but we'll take anything we can get.  Just have to say, I see no benefit in getting cancer as has been posted......just sayin Undecided  Thank you all for being there always,

Becky

abcma
Posts: 24
Joined: Aug 2006

I am so happy to hear that Bill is in remission for a long time.  That’s the best possible news!  You have had a long journey.  

Bev

ceili
Posts: 15
Joined: Jan 2017

I am so happy for you both. To know Bill has been succesfully fighting this for 8 years gives so many of us great hope and encouragement. You are both very strong individuals, wishing you both the best.

Scott

PBL
Posts: 182
Joined: Jul 2016

Really glad for the two of you! May that be the neverending remission.

PBL

Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

I love it! I am so happy to hear this report. The doctor from MDA smiling from ear to ear and saying he believes Bill will be in remission for a long time must have been music to your ears. It sure is to mine. And they already have a plan in place IF he should relapse again must give you added confidence. What a wonderful report. Thank you so much for sharing. 

Becky, for the record I see no benefit in getting cancer either. 

Give Ned a hug for me.

Much love to you both,

Rocquie

 

yesyes2
Posts: 581
Joined: Jul 2009

Becky I wanted to join in and say how happy I was to read the great report you and Bill received at MDA.  I want to welcome Bill to NED.

I was wondering if the doctors have mentioned that repetitive sinus infections and problems with sinusitis are a side-effect of long term use of Rituxan.  I have been on Rituxan for 10 years and seem to always be dealing with sinus problems.  Over the counter allergy meds help me more then prescription medications I have been given.  I can't stand the sinus washes but they are supposed to help.

Again congratulations on your fantastic news.  Lots to celebrate this holiday season.

Leslie

 

 

po18guy
Posts: 989
Joined: Nov 2011

The good thing about good news is that it is good! Live each day, love each day!

illead's picture
illead
Posts: 834
Joined: Aug 2012

for your kind and comforting words as always, they mean so much and are never taken for granted. We are from all walks of life but here for each other, it is special. Thank you for the info on sinus problems Leslie.  I wondered about that but neither Dr Wang or Bill's onc here have ever said anything about that.  One thing his onc said here which is good to know is that Sudafed from behind the pharmacist's counter contains the original medication (I think it is ephedrin), but it has been taken out of the OTC one because of people making drugs out of it, so you can sign off on it buying it from the pharmacist.

Thank you again, Becky

lindary's picture
lindary
Posts: 633
Joined: Mar 2015

I am happy to read your good news. NED are 3 of the best letters in the alphabet.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Merry Christmas, Happy Holiday and I’m so darn happy for you both.  You have no idea how thrilled!!!!!!

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