Tom will go back to U of C for his next chemo round..this afternoon was a disaster

oriontj

We went to meet with the liason dr from the U of C...like 5 mins from our house...waited 2 hours...no one called to say come later..or we could of had lunch.

I watched Tom carefully as the dr said..this is what his U of C recommended but later he would DEPART and then just consult them...on what he would do...Still no comment from Tom, so I said...sweetly...explain DEPART....his U of C drs said, they are calling the shots and you are following what they say. He back pedaled...right, right that's what's happening...STRIKE ONE!

STRIKE 2....he said to Tom you'll get a port..that did it for Tom...a very good friend had that and died due to a massive whole body, systemic infection from the port. Again, the dr. back pedaled and said we'll try the IV...and Tom said NO PORT unless necessary. I was quiet..he finally spoke up...get out the champagne! Later when we saw the facilities, the nurses said we do that to everyone...Let's see..I have a good memory...I never saw a port at the U of C..I'm sure there were some...but not the chemo days I was there..

This time...not so sweetly...I said..I know it's easier for you all if they have one..I had to have a IV thingy in my arm for a week...and it was no picnic...but we might not be able to get a vein...etc. Meanwhile the dr. came in and said...you will do by IV unless it's absolutely impossible. At this comment Tom, just looked at me and rolled his eyes, later he said..well you just told them they were lazy...I told him so be it...this isn't Staples and there's NO EASY BUTTON!

STRIKE 3...the Dr. violated HEPPA by actually, I kid you not mentioning a patient by name...with ec...who gets the same chemo cocktail Tom will get.

STRIKE 4...he asked if Tom had been tested for HER2..Tom had NO idea what that was..but I did because I learned it right here on this board...I said to the Dr. do you know which type of ec he has? It's irrevelant because it won't work..oh yeah he has squamous...Tom continued to look at me.

STRIKE 5...He told the nurse to call Tinley Park for what the "he sholdn't of said his name" was getting..cause that's what Tom is getting.

Not so sweetly I said..you didn't know what it was? How did that come about? We knew..

Again, Tom looked at me...this time with some admiration in his eyes...along with a lot here she goes...with all the tack of a tank. He's totally right...those really neat tanks with all the gadgets!

STRIKE 6...the chemo room is in the back...dismal...this dr does a lot of local chemo for the U of C...and it's crowded and only on the day he is in this office..Wed..there was no room for anyone to sit with him...if another chemo chair was available it could be used otherwise they bring in a stool...like who sits on a stool for four hours? Not I..I'd be in Orthopedics by then for back surgery...

There was no privacy...no TV's...Tom loves his TV..and the nurses couldn't see everyone from the little opening in the wall and were sitting in the office station.

Tom is used to the high efficency of a major internationally renowned hospital..where the nurses can see everyone...and it's big and airy and bright. This was not as professional as I would like to see and Tom felt the same...I hated it...and didn't feel one good vibe the entire time we were there. I thought it wasn't professional...not like the U of C..

Tom decided he wanted his U of C drs to be in charge..and I totally agree and if he didn't..had all of the above reasons not to stay local and many more waiting in the wings..
It's just a 15 min ride to the train station or a 30 min drive to the U of C and I could do it in my sleep...I told him...I would do whatever he wanted..take him to the train and then come for him...take him in and stay with him...but I didn't want him in Munster period...

Originally he said he decided to stay local because of convience..well...not a good reason when your life is at stake...not at all.

Perhaps down the line, we might have to reconsider things...but not now...not at all..

He has no symptoms, is 16 lbs heavier than he was in August 2009...and is 6 lbs heavier than his usual weight...and can eat anything...

As I said...I'm quiet because my opinion was never asked nor considered before...but I would NOT let this pass...nor would I let him do this...ever...I spent a lot of time when he thought I was stupid and pushy...so I stopped it all...but I never stopped learning and I never stopped reading this board and soaking up all the wonderful information...and I'm NOT afraid to use it...

The Dr. called me a fireball...he has NO idea...Tom and I have our differences, we're polar opposites in how we approach everything this is no exception...but I refuse to let him to to a second rate place...period.



jan

DanaMB3

Jan,
Sorry you guys had to
Jan,
Sorry you guys had to experience all of that! It makes me sad that others who are unknowing of the quality care that is available elsewhere, are subjecting themselves to that. Thank goodness you know better and have taken charge. Your husband is very lucky to have you.

Speaking of port infections, my father had his implanted last week at our local hospital and it is infected. My dad was not checking it and never even noticed, until my mom saw that it was red during one of his other tests. He started the antibiotic 2 days ago and I pray that it takes care of it.

On another note, we met with Dr. Ferguson at U of C yesterday. He said my dad is a "highly likely" candidate for surgery, but we will first have to see how he reacts to chemo as he needs it to shrink the tumor and one of the very large lymph nodes. They are waiting on the new biopsy results and will hopefully get chemo started next week. (We liked Dr. F but were not thrilled that they overbooked him and our appt was at 4:00 and we did not meet with him until 6:30!!!). Good news is he would be able to perform the MIE surgery.

Donna70

DanaMB3 said:

Jan,
Sorry you guys had to
Jan,
Sorry you guys had to experience all of that! It makes me sad that others who are unknowing of the quality care that is available elsewhere, are subjecting themselves to that. Thank goodness you know better and have taken charge. Your husband is very lucky to have you.

Speaking of port infections, my father had his implanted last week at our local hospital and it is infected. My dad was not checking it and never even noticed, until my mom saw that it was red during one of his other tests. He started the antibiotic 2 days ago and I pray that it takes care of it.

On another note, we met with Dr. Ferguson at U of C yesterday. He said my dad is a "highly likely" candidate for surgery, but we will first have to see how he reacts to chemo as he needs it to shrink the tumor and one of the very large lymph nodes. They are waiting on the new biopsy results and will hopefully get chemo started next week. (We liked Dr. F but were not thrilled that they overbooked him and our appt was at 4:00 and we did not meet with him until 6:30!!!). Good news is he would be able to perform the MIE surgery.

glad you got out of Dodge!!
Hi Jan,
So glad you were there to stand up for your hubby. Glad you will be going to a bigger facility. Now my chemo had to be done thru a port it was known to burn veins up and I will have to say I have had my port since August 2009 and don't even know it is there. My veins are not so good to access so I am glad to have it. I have heard of infections from them but more good outcomes than bad. Just glad Tom will be getting the right treatment, cannot believe a dr would use a patient's name to other patients. Wow!!! take care and good luck with better treatment and glad Tom is acknowledging your expertise on his EC. take care,
Donna70

Callaloo

Thanks for the update
I'm so grateful for your posts. Not many others on this board with the same diagnosis. You're absolutely right to go back to U of C. I decided to forego the clinical trials last year and had many reasons to take my initial treatment locally, but did consult a well-known specialist before starting chemo who concurred with the regimen. Fortunately, we have a very well-equipped and professional local clinic. However, I have decided to go to a major cancer center elsewhere for further treatment. Just haven't decided where yet.

Jan, can you tell us what chemo Tom is receiving? I am meeting with my onc on Monday (latest CT scan was not as good as I had hoped) and I want to be equipped with as much info as I can about any Plan B.

My best wishes for you and Tom.

P.S. I'm sending you a CSN email.

Lu

Boston67

I can feel your anger
Hi,

I can feel your anger from your posting

I too find my anger closer to the edge about everything.

What I try to do is convert my anger, my time and my energy to things that can help. I got myself into Dana Farber in Boston and world renowned canter for treating esophageal cancer. They are accepting new patients, are very well funded and all there seem to have caring and loving hearts. http://www.dana-farber.org/ I had similiar feeling about the center I first started at and focued on getting to a better facility. But I still know in my heart that the first facility did care about me, and did the best they could. God bless them for being there in the blizzard and for their love and caring.

Everyone here at this site is trying to help you. Everyone, or they would not be here. Some stay long after their life has returned to normal. Feel their love and return it. What we are all going through really sucks. If we focus on that, it brings us down. If we turn our anger into fixing those things we do not like, good things happen.

Keith
Age 67 Boston
Stage IV

sal314

Top Notch Care Worth the Hastle!
Though it's not convenient, having quaility care is the number one priority! Glad he decided to leave the less than ideal facility and go where someone knows something!

I had some surgery at U of C and drove an hour each way several times a month for several months. It was a pain in the arse, but well worth it! You do what you have to do when "your life is at stake" as you said.

Hoping that his treatment and experience is much more pleasant at U of C! Sounds like it couldn't be any worse.

Blessings,

Sally

Tina Blondek

Oh Jan
God bless you both.
Oh Jan
God bless you both. You have done a wonderful job. You sure are a fireball, and Tom knows he is lucky to have you! Too many strikes for my liking. You go with that gut feeling girlfriend. You deserve a big High Five and a pat on the back. Keep up the good work, and keep us up to date!
Tina in Va

K_ann1015

Great Job Jan!
WOW Jan,

It would have been challenging just to "go thru" that appointment, but to also patiently & respectfully hold back and try to let Tom speak up---while you may have wanted to almost yell at the docs---that is impressive.

Sometimes, when it is black & white in front of you it is so much clearer. Tom got to see the stark contrast of potential care--with his own eyes, but you were there to support & love him and push a little when necessary. I am glad you posted--I think you will help others who aren't sure "how much to push their loved one". No two situations are the same---but I think although it must have taken every ounce of strength in you---you did a good job.

Prayers with you both.

unclaw2002

Jan,Wow, what an
Jan,

Wow, what an experience. I think it speaks volumes about a patient wanting to stay close to home for treatment verses going to the professionals at a cancer center --- there can be no doubt that staying local can and has resulted in less than optimal treatment for many cancer patients. It scares me some days how few medical professionals really understand how to treat Esophageal cancer and how many people receive substandard treatment. Bravo to you for standing up for your husband. Knowing that your husband hasn’t been the most open person to your help and his cancer this experience must have been very difficult for you.

I wanted to let you know something about the HER2 test. I was speaking to the oncologists at Sloan last fall when the FDA approved the use of Herceptin in treating recurrent EC and discussed with the doctor the options for treatment if you test positive for the HER2 gene. The doctor explained to me that the HER2 gene has been found to over express in both Adeno & Squamous EC – but while it appears to be found in about 20% of adeno EC cancers it has been found less than 2% of the time in squamous EC patients. But the doctor said since Herceptin is given in addition to other drugs that there would be no harm in using herceptin in squamous EC if the patient has the HER2 gene. There haven’t been extensive studies done on this because of the limited number of EC patients, even fewer Squamous patients and then fewer Squamous patients who have the HER2 gene. Even though it is a real long shot, I might consider the possibility and speak to your doctors at the UC to see if they could test for the HER2 gene – it can’t hurt and it might give you another option.

I am sure there are other opinions and I am going to ask my dad’s new doctor at MD Anderson about this as well. Unfortunately my dad tested negative for the HER2 gene. It seems like when you ask Dr. Google there is a lot of conflicting and ambiguous information floating around the internet.

One last thought, the doctors put a port in my dad before he ever started his chemo and radiation (perhaps it was because of his age 78) but in discussing the options with them they felt it was better to administer the chemo and fluids through the port and did not want to stress out his veins. It has been a God send to him and he hasn't had and real problems with irritation and infection. His biggest problem with the port has been going through the security at the airport when he flies and his pat downs

Good luck to you and your husband.
Hugs and prayers,
Cindy

oriontj

DanaMB3 said:

Jan,
Sorry you guys had to
Jan,
Sorry you guys had to experience all of that! It makes me sad that others who are unknowing of the quality care that is available elsewhere, are subjecting themselves to that. Thank goodness you know better and have taken charge. Your husband is very lucky to have you.

Speaking of port infections, my father had his implanted last week at our local hospital and it is infected. My dad was not checking it and never even noticed, until my mom saw that it was red during one of his other tests. He started the antibiotic 2 days ago and I pray that it takes care of it.

On another note, we met with Dr. Ferguson at U of C yesterday. He said my dad is a "highly likely" candidate for surgery, but we will first have to see how he reacts to chemo as he needs it to shrink the tumor and one of the very large lymph nodes. They are waiting on the new biopsy results and will hopefully get chemo started next week. (We liked Dr. F but were not thrilled that they overbooked him and our appt was at 4:00 and we did not meet with him until 6:30!!!). Good news is he would be able to perform the MIE surgery.

That's great your Dad is considered highly probably for surgery
That's good news...overbooked...but at least you got in...that's a plus...He's a super surgeon and your Dad would be in good hands..

jan

oriontj

Callaloo said:

Thanks for the update
I'm so grateful for your posts. Not many others on this board with the same diagnosis. You're absolutely right to go back to U of C. I decided to forego the clinical trials last year and had many reasons to take my initial treatment locally, but did consult a well-known specialist before starting chemo who concurred with the regimen. Fortunately, we have a very well-equipped and professional local clinic. However, I have decided to go to a major cancer center elsewhere for further treatment. Just haven't decided where yet.

Jan, can you tell us what chemo Tom is receiving? I am meeting with my onc on Monday (latest CT scan was not as good as I had hoped) and I want to be equipped with as much info as I can about any Plan B.

My best wishes for you and Tom.

P.S. I'm sending you a CSN email.

Lu

Have to check his folder for the drugs
But I do one is the cisplatin family and the other in the taxol family...he had those the first time...so these are variations I believe...

jan

oriontj

Boston67 said:

I can feel your anger
Hi,

I can feel your anger from your posting

I too find my anger closer to the edge about everything.

What I try to do is convert my anger, my time and my energy to things that can help. I got myself into Dana Farber in Boston and world renowned canter for treating esophageal cancer. They are accepting new patients, are very well funded and all there seem to have caring and loving hearts. http://www.dana-farber.org/ I had similiar feeling about the center I first started at and focued on getting to a better facility. But I still know in my heart that the first facility did care about me, and did the best they could. God bless them for being there in the blizzard and for their love and caring.

Everyone here at this site is trying to help you. Everyone, or they would not be here. Some stay long after their life has returned to normal. Feel their love and return it. What we are all going through really sucks. If we focus on that, it brings us down. If we turn our anger into fixing those things we do not like, good things happen.

Keith
Age 67 Boston
Stage IV

Not anger...past that
I just don't like people who have no idea what's going on and treat everyone like a cookie cutter...doesn't work...

U of Chicago is the best for him...not here..but that's taken care of now...his U of C doctors set it all up in 1/2 hr...they are super.

jan

oriontj

K_ann1015 said:

Great Job Jan!
WOW Jan,

It would have been challenging just to "go thru" that appointment, but to also patiently & respectfully hold back and try to let Tom speak up---while you may have wanted to almost yell at the docs---that is impressive.

Sometimes, when it is black & white in front of you it is so much clearer. Tom got to see the stark contrast of potential care--with his own eyes, but you were there to support & love him and push a little when necessary. I am glad you posted--I think you will help others who aren't sure "how much to push their loved one". No two situations are the same---but I think although it must have taken every ounce of strength in you---you did a good job.

Prayers with you both.

When it comes to pushing..well
Hard to stop a gadget loaded tank...You have to be confident in your choice or everyone is miserable...I'm not impressive...not one bit...just get miffed at what goes on in offices etc..miffed being a polite word my Mom would of used...I use others..

You have to push until you get the information you want. There comes a time when it doesn't help but that's now..not yet.

jan