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Not good news

Ann_Burt
Posts: 10
Joined: Feb 2010

It has been a wile since I have been on here so I will give a quick update on Burt.Since he had not been able to swallow anything at all his ent ordered a video swallow test.Had test on april 5th and they had to stop it after first try cause he could not swallow the pudding.Went to get results from ent on the 15th.He said there is to much damange to the tissues in his neck.And his tongue muscles are to weak plus the flap that covers his esophagus when you swallow just lay,s there.So in a nut shell he will never take anything by mouth. He said he could do a tracteotomy so he could eat again but it is a surgery he did not think was wise because he did not have a lot of time left and he should start thinking about the quality of life he has left.And a surgery and recovery would take away from what time he has left. We go to see the chemo doc this thursday the 22nd and are going to see if there is anything left to do that might give him a little more time and not make him so sick and tired all the time.I will let you know what the doctor says.I want you all to know this site has been a blessing to me.And it always makes me feel good when I hear of everyone that is doing well. God bless you all Ann

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Ann, I'm sorry to hear that your husband is having so many problems. Please know that you will both be in my prayers. Try to stay positive and believe that the chemo doctor can find another drug that will give your husband more time.

Take care and stay strong,
Glenna

Hondo's picture
Hondo
Posts: 5742
Joined: Apr 2009

Never give up hope, My Prayers and thoughts are with you both.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I'm so sorry to hear your latest.
You and Burt will be in my prayers, for sure.

--Jim in Delaware

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Ann and Burt- know you are in all of our Prayers. Know it, and...

Believe

kcass

Ann_Burt
Posts: 10
Joined: Feb 2010

Well we went to chemo doctor and he pretty much said the same thing as Burts ent doctor. He said the chemo was just to manage his symptoms.And that he needed to think about if he wanted to go on with chemo or stop he said if he wants to continue he will be right there with him.Burt had chemo today said he is not willing to give up and thats all good by me.We do have an appt: with the university of chicago hematology/onclolgy department on the 27th.Not really sure if we are going to hear anything different but who knows right.You all stay strong I will let you know what happens. Ann

Hondo's picture
Hondo
Posts: 5742
Joined: Apr 2009

I agree never give up, keep fighting and keep praying.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Fire34, ratface and I are also of Illinois, Ann. I'm Quad-Cities, across the state. U of Chicago- a highly-reputable place, to be sure. Rush is also cool (look at the picture by my name, and remember what you see at Paulina and Ashland on the Ike- that's what you see). Fire34 and ratface were both treated in Chicagoland.

Ann, and Burt- hopes and Prayers. God be with you.

Believe

kcass

Fire34
Posts: 352
Joined: Feb 2010

Ann
As Kent said I was treated at U of Chicago. I finished my treatments Nov. 30th. All three of us I believe went to different places and would give you the same review of those places. All I can say is that my care at U of Chicago in my opinion was top of the line. They care for you as an indivdual and not just a number. The nurses in the chemo suite were really nice, although busy took as much time as they could for you. In the hospital the nurses on the oncology floor were the best in my opinion as they knew what you were going thru and treated you with the respect you deserved.
Radiology being the worst place, they were as nice as they could be LOL My mask did not seem to be the one I was fitted for 2 months prior and they were able to make it as comfortable as possible without jepordizing my care. Dont let that scare you though what I mean by that is in doing IMRT the machine is programmed to certain cooordinates and they shimmed my mask a little, but not too much to change those coordinates. After that I just got use to the darn thing.
I was part of a clinical study. I too went thru the swallow studies, one pre-treatment, one during, & one post-treatment to get my tube removed. Those seemed to be the worst for me, especially the one during treatment. Well enough rabbling, if you have anymore questions let me know. I will see if there is a spot for e-mail addresses on the members page.
Hopes & Prayers & Best Wishes
Dave

Ann_Burt
Posts: 10
Joined: Feb 2010

As I said before There is no more surgery or radiation left for burt only chemo.And he is now on his 3rd round.Right now he is taking erbitut,carboplatin,5-uf the last is in the 96 hour portable.But they tell us it is just for palliative care that they consider him incurable.But we both agree as long as the chemo is keeping it at bay then he is going to keep trying because you just never know what can happen.His blood work has always been perfect he has never had a fever never had to go into the hospital except for the surgery.He has had an still does have a lot of the same side effects i hear of you all speak about.But we deal with them one day at a time.I am very glad to hear of you all speak so highly of the u of chicago I told him what you said and he seemed to be a little more encouraged.Not that he does not like his ent or his med onc here but a bigger place might be more advanced in treatment options. I wish you all the best and a good night .Its been a long day and it,s time for bed for me anyway he,s going to watch a movie. Ann

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Ann- first, I kinda figure the U of Chicago to be first-rate. Lot depends on the actual Drs. running the show, though. Know Fire34 has spoken highly of them.

That said, if you have a good relationship with your regular Dr., you might want to ask him/her if they are aware of another top H&N Dr. in Chicagoland that might have a different opinion on Burt's options. Northwestern is large, of course; and there is always Rush-Presbyterian-St.Luke's on the Ike, with Rush Med. school across Harrison from the large hospital. From personal experience, I can tell you that R-P-S used to have one of the most respected ENT centers in the entire nation, due to two pioneering Drs. who practiced there back in the 50s-70s. I can't advise on how cutting-edge they are now. And, I do know Rush is involved in trial studies for different kinds of cancers, and treatment. Might be worth a try, Ann.

(312) 942-5000 is the number to call to get it started, there. Head and Neck, I see, is something they treat. http://www.rush.edu is their website.

Know, Ann, that all are hoping and Praying for you and Burt.

Believe

kcass

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

I wish you and Burt many more good days Ann. As everyone says and you know, keep looking up. I'm a lifetime hiker and always slowed down to look up, and enjoyed some of my best views that way. You and Burt are lucky to have each other in these days.

best, Hal

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

Consider the liquid diet also, I survived on Ensure Vanilla for 3 months, Or maybe try something like the Ninja that you see adertised on tv to liquify what ever you can for nutrition, and always remember to take a sip of liquid with every bite, that helps.

Godspeed,

GRAVEY

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