gtm2009
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Thanks to all for your responses. I just got a phone call from MD Anderson that she is not a candidate for proton therapy as she has reached her radiation limit. I guess now it’s just a matter of time at this point.
While I am here though I’d like to say how pleased I am with the doctors and nurses at Winship Cancer Center and Emory University Hospital. The cancer was rather large when she was first diagnosed. Yet she is managing to survive after 4 years.
Julie,
As a fellow caregiver, I wanted to give you some advice.
1) Make sure she gets to a hospital who has treated this cancer before. I strongly urge you to take her to a National Cancer Center. I believe Mayo Clinic in Rochester MN has treated more cases than any other hospital in the world. However consider how easy it is to get to the hospital. We live 5 minutes from Winship/Emory. They recommended the same treatments as Mayo, so we opted with Winship.
2) Don’t let the survability statistics depress you. These 2 and 5 year statistics are based on treatements that were in effect that long ago. Many advances have been made since then. More are being made every day.
3) Our personal experience with this disease has been unbelievably good. My wife was diagnosed a year ago. Since then she’s been treated with radioembolization and Cisplatin/Gemzar chemo. Today she has less cancer than she did when she started treatment. She’s been off chemo now for 8 weeks and today her doctor gave her a 3 month extension of her chemo-free vacation. She’s being treated by Dr. El-Rayes at Winship at Emory University Hospital.
4) NEVER give up hope.
5) TAKE CARE OF YOURSELF!!!! 40% of all Caregivers die before the person they are taking care of. (I’ve been told that by several reliable sources). Bottom line is that if you aren’t breathing, you are of no help to your mother.
6) Ask questions to your doctors, nurses, EVERYONE
7) NEVER be shy. The only stupid questions are the ones you don’t ask.Sarah,
It’s true! You meet the nicest people on this board. Thanks for the offer. However we live in a very close-kinit neighborhood and we are fortunate to have more friends and neighbors than we possibly could use. However I may call you in the next several days to discuss our situations.
Thanks so much for your kindness.
Kris,
It seems to me that assuming my wife’s R0 resection is successful, that we’d get CT scans at least annually to make sure cc is not spreading again. Is that normal? This way it could be caught early so that one of these non-surgical procedures could be performed. Is that normal procedure?
Does anyone know if medicare pays for a resection or these other therapies such as cybernice, RF abulation, PDT, etc?
Kris,
From what I was told, Doctor El-Rayes is the head of the Hematology and Medical Oncology department at Emory. Collette (the one who does the scheduling) said that the way they work is that the doctors discuss the case and make recommendations for treatment.
All I can say is that I hope something happens quickly. The fact that this is an aggressive cancer makes me want her to start treatment today.
All….
Being the squeaky wheel but polite while scared yet undestanding about other people’s needs, worked.
We have an appt with a Dr. El-Rayes at Winship (Emory) on Monday. So on Monday we have an MRI at 10:30A at Dekalb Medical Center, Dr El-Rayes at 12:30P and Dr Steiber (Dekalb Medical Center Surgeon – second opinion) at 3:30P.
Doctor Kauh at Emory is on vacation next week.
Monday will be busy.
Just out of curiousity… what’s the going rate for a kidney transplant?
Does medicare cover a resection???????
Sorry… I have one more question… wellm for now at least.
On Monday we’re going to see this Dr. Steiber at Dekalb (Georgia) Medical Center. What questions should I ask him? I am thinking…
1) How many cases of cc have you dealt with in the past?
2) How long ago were they?
3) How many times did you decide a resection was not possible?
4) Of the resections you did , how many were successful? How many were not?
5) What is your process? Do you, the oncology radioliogist, and the oncologist as well as whomever else sit down together with us to discuss this case and determine the best course of action?Can anyone else think of additional questions to ask during this “interview” with the surgeon?
About an hour after I sent en email to wci.referrals@emoryhealthcare.org stating that we’ve been waiting since Monday (now Thursday) to hear from them, I got a phone call from Angela at WCI.
I ended up hand carrying all of my wife’s records over to Winship (Emory). So now she’s “in the system”. We’re supposed to hear by Tuesday or Wednesday when her appointment will be with the oncologist.
Marion…. no I guess I was trying to follow “standard” procedures as outlined by the website. I will call/email today. Thanks for the advice.
