Not good news

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

delnative said:

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

--Jim in Delaware

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

Believe

kcass

Ann_Burt said:

Well we went to chemo doctor
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

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

Kent Cass said:

Chicago
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

U of Chicago
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 said:

Thank you
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

A 2nd Opinion?
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

Consider the liquid diet
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