Topic: My new road: radiation?

Here I am in ANOTHER discussion section! I never thought I would be posting in radiation because at the very beginning of this horrible road I was told radiation would never be an option due to the placement of the tumor in my liver.
Well, here I am. It seems I have a group of nodes growing behind and between my intestines, pancreas, duodenum and getting close to my "good" bile ducts. It has doubled in size in 2 months. Xeloda did NOTHING for it.
So here I am. Surgeon says radiation is my best chance. Now the question remains: do I go into NY for my 5 day a week/5 week session? Or do I try to get into Fox Chase Cancer center which is 15 minutes from my house? Will they talk to each other? Or am I opening up another can of worms? I don't believe I have too much time to think about this.......
My trips to NY take 3-4 hours. I may have a possibility of staying a little closer to there at some friends' houses for treatment, or maybe even getting into Hope Lodge which is in Manhattan, not too far from wherever the treatment is going to be.
Or do I stay home where I can be at my house and get rides to Fox Chase? My mind is whirling with "what ifs" and what should I do????

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Kris, crazy question, but, what would be your reasons for NOT staying closer to home?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new road: radiation?

One of the side effects of radiation treatment is fatigue which usually accumulates over the course of treatment.  I had radiation treatment for my breast cancer years ago and it was a fairly easily tolerated treatment.  The side effects are different depending on where on the body radiation is being used.

The actually treatments (after the initial setup stuff) are pretty quick... mine took less than 15 minutes from arrival to departure.  In my humble opinion, traveling hours to get a treatment that you can get locally is not a prudent use of time.

Is there something you think that you can get from going to NYC everyday that you don't feel you can get locally?  If it's the communication between docs that concerns you then I would make that completely known to both doctors and make sure they understand how important it is to you that they work together and keep each other and you informed.

Good luck with your treatment Kris.
Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: My new road: radiation?

It's the communications between facilities that concerns me. Whenever I go to Abington, even for something as simple as a blood draw, it takes hours of phone calls to make sure it gets to my doctor at Sloan. It's such a hassle.
I talked to my surgeon about possibly going to Fox Chase and he said he didn't have a problem with it. BUT that doesn't mean either my insurance will allow it OR that they will communicate with each other. Fox Chase makes so much more sense to me. BUT it isn't in the Sloan Kettering network.
I think I have lots of phone calls to make this week. And lots more thinking to do.
Thanks for the input. I know fatigue is a big side effect, and that concerns me, also, since I live alone. I would like to be near my friends who can help me out if I need anything. And they are definitely not in Manhattan!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Kris, Teddy also had radiation before his Cyber Knife in the area of the Duodenum. It was a 3 week deal. He was fine in the beginning and then during the 3rd week he got really, really exhausted. That lasted for about a week and then he was fine. His kids had all come in for a family weekend and sadly they had to visit him in his Hotel room in bed, I brought his meals in to him. Again, it was only tiredness, he never felt sick from it.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new road: radiation?

Kris--

Did Dr. Fong mention oncologist Peter Yi (Princeton) to you? They are buddies from Cornell ....maybe that's a closer option? And that way I could come hang out with you!!!

Audrey ("betzeegirl")

Re: My new road: radiation?

I had the same concern as you, but stayed local in Sarasota. The equipment is the equipment, they should be able to map out where the radiation needs to hit and no matter where you are, the 'zapping' if you will should be the same. My doctors never had a problem communicating with Sloan either. I would stay home. So far, I've driven to each of my appointments and haven't had an issue. Yes, tired, but not to the point of being unable to function, just naps more often than not! Good luck, hope you made some calls this week and are getting it figure out.

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: My new road: radiation?

Kris...I agree with the others.  As long as you are assured that the treatment is equal to that of Sloan you should make it as easy on you as possible.  Lack of communication amongst treating physicians is discussed at all medical conferences I attend. It is a big problem and unfortunately it still seems to require for patients to stay actively involved in this process.  Just one more thing for patients to have to worry about!  But hopefully you are able to set the pattern of communication right at the beginning so that little follow-up is required.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My new road: radiation?

Audrey: I have an appt. scheduled with Dr. Lee (Richard) that is an onc in Princeton at the Medical Group. I don't know if I'm keeping it or not. It depends on Dr. Kemeny. I have to have an onc. who's staff knows how to access the port. And Dr. Lee's office does, but only for the 2 week heparin/saline solution.
Derin: nice to see you again!
And to all: Dr. Kemeny called me last night. I'm waiting to hear from her again today... it seems she wants a "special" radiation that might not be offered at Fox Chase. I'm sure it is, but I still have the issue of the pump to deal with. So I wait..... I was also going to do a little scouting if I went to Fox Chase. I was going to discuss my diagnosis with an onc and/or surgeon and see if they agree with Dr.'s Kemeny and Fong. I love Dr. Fong, but if I can get treatment that I agree with 15 min. from home, I might consider it..... don't know yet.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

I don't know about changing docs if you get to a surgical option... That's the main reason I went to Sloan, knowing that I would have to have surgery one way or the other to 'fix' the blockage in the bile duct that I had. Radiation/Chemo is one thing locally, but surgery is another altogether...

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: My new road: radiation?

I love my surgeon but since I can get my foot into the door at Fox Chase why not ask?? It's 15 min. from my home as opposed to 3 hrs. I know, I know, I don't have to fly. But still. It's all about the options. We don't have many, so I'll research the ones I do have!

So here's the latest news: Dr. K. acted like the radiation she wants me to get is new. She said 2-3x a week, which is much more doable.

She wants me to have either conformal or stereotactic radiation. Not new, according to Fox Chase Cancer Center. They've been doing both since around 1999. And they do have a bile duct dept. (for lack of the word I really am looking for).

Dr. K. says I can go to Fox Chase. YAY!!!! Now all I need to do is get Dr. K's office to fax FCCC the necessary paperwork and stuff. I have my last 2 CT scans on disk. And all the original stuff. I don't have the April-Feb. stuff. I hope they don't need that. I do have all the paperwork that comes with it.... hopefully that's enough.

I guess I'll find out next week.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

That's good news Kris. It all seems to work out in due time. Ya never know who you can meet at the new digs!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new road: radiation?

Lainy: I have to tell you the dance instructor taught "I Need a Man" on Thursday. Of course I had a blast with that one!!!!! But the song goes something like "Not a Boy, I need a Man, need a Man!" Needless to say everyone who knows me was laughing and pointing that this is my new song!
Who knows? Maybe I'll meet not only some great staff at FCCC but maybe I'll also meet a "MAN"!!!! smile

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Best of Luck in finding Mr. Music Man! Kris, I play around on Senior Meet Up. I have lowered my expecatations now to finding someone with all his front teeth!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new road: radiation?

I'd like to meet someone with a job, a car and a place to live. Even that's hard!! smile

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Dr. K called me on Friday personally (OH, BOY!!) to tell me she's concerned about how long it's taking to get into Fox Chase. I responded by telling her that if I had known I had to do all the legwork I wouldn't have waited 2 weeks while I thought her office was doing the work.... then I would have gotten in earlier. And if she wants me in faster, I suggested she call the dr. and tell him that. Well, it's been 3 working days and nothing. So I guess she isn't THAT concerned!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Oh, Kris, I could just scream.  I don't understand why patients, who are going through enough already, need to be their own coordinators. 

I hope you get in soon.

Take care,

Susie

Re: My new road: radiation?

OMG, Kris. Wherever and whatever has transpired with my own Cancer the Doctors offices have always done the leg work. When I just switched to MDA out here they called every Imaging place and every doctor I had used and my Hospital to get ALL my records. This is not acceptable! I sure agree with Susie! I feel so bad for you as if you don't have enough on your mind!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new road: radiation?

Tomorrow is the big day. 3-4 hour apt. with radiologist. I guess I get to learn what stereotactic radiation is all about. I don't know what tomorrow is going to hold: I have no idea what they are going to do for 3-4 hours... another scan? My tats?? My mold?? I guess I will find out. No sense speculating: I have NO idea... so if you are reading this before 10:30 (or even later) on Tues. Eastern Time, send up a prayer, positive thought or whatever positive vibes you believe in...
Thanks a bunch.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Beats the heck out of me what they are going to do.  But sending a ton of prayers your way that all goes very well! Will be thinking about you too.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new road: radiation?

Kris....you must know that a tidal wave of support is heading your way. 
In re: to Stereotactic radiation (also called pinpoint radiation)
A special scan pinpoints exactly where the tumor target is located. Some machines have the ability to adjust for patient motion including, breathing whereas other machines require a special holder. The purpose is to give high amounts of radiation in a short period of time (one to five days) and spare the surrounding tissue and organs.   

Numerous companies market these special machines: Primatom, Synergy, CyberKnife, Gamma Knife, Novalis, Axesse, TomoTherapy, Triology, X-Knife, or Trilogy. 
Tons of hugs and best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My new road: radiation?

Wishing you the best of luck! We're headed to the airport for our NY trip...

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: My new road: radiation?

Good luck Derin! I guess I'll miss you this trip, too!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

My thoughts and prayers are with you Kris. 
Peace be,
Karen

Wishing all God's blessings!

Re: My new road: radiation?

how did it go, kris?