January 26, 2012 at 2:30 pm #56889
thank you for the advice lainy. i am searching the site to find email address for dr javli. so far havent found it. we asked sloane if we could email someone just to get an answer about chemo regimen that was offered at u penn but they said no.January 26, 2012 at 4:01 am #56888lainyParticipant
Sally, is there no other place you can try just for a consult? Can’t remember who posted the other day but they sent Dr. Javli an e mail at MD Anderson in Houston and he replied in an hour.January 26, 2012 at 3:39 am #56887
not too much luck with sloane today. we tried everything. called different doctors, begged, pleaded. nothing! all appointments go thru the scheduling dept. everywhere we called we were directed back to scheduling. they gave us an appointment for february 28. we asked if a dr could just review the file we sent and make a decision if a dr wants to see her sooner. no luck. very frustrating. i dont understand this process. they ask you to send them all these records before giving you an appointment for a dr but no one apparently reviews these records until you get there. now we have to try to come up with the decision to wait or go ahead with chemo at u penn. it was a long upsetting day.January 25, 2012 at 6:33 pm #56886kris00jParticipant
Good luck. As far as second guessing, you can’t do that!! Make the choice that seems right to you… use the oncologist and any other doctor’s advice to make decisions.
“coulda, woulda, shoulda” can be said by almost all of us suffering from cc. We just have to make the best decisions for us and hope we are right.
Good luck. I hope you get in to see someone at SK. BTW, I didn’t give you Dr. Kemeny’s phone number. It is 646-888-4180. Even if she won’t take your sister, maybe her office can give you another dr.’s name and direct office phone number.
KrisJanuary 25, 2012 at 5:17 pm #56885
thank you all for the advice. we are back to the phones to battle with sloane again. what it now seems to be is they are saying is if you need chemo fast than go back to university of penn and start. if you want to wait than you can come here in five weeks. we are trying to find someone who will move the date up. they put us in a difficult decision. do we wait 5 weeks for a second opinion and maybe its the same as u penn or do we start chemo now and maybe miss a better treatment. my sister had her second surgery on dec 15 and they removed 5 tumors. the surgeon said he got all the tumors. they are now talking about microscopic cells that may form more tumors. u penn oncologist did say we could wait and see what develops or try the chemo now.
it is a terrible decision to have to make. either way you are left to wonder what if i made the wrong choice. again thank you all very much.January 25, 2012 at 4:31 am #56884kris00jParticipant
I would call again and insist on talking to someone else. Usually there are 1 or 2 people you can talk to. Explain again that chemo was not started and since cc is involved, you need the appt. FAST! My Onc at SK is Dr. Kemeny. She is a biggie in the hepatobiliary cancers, but I think she only deals with patients with her pump. You can try tho. She has office hours on Mon. and Wed. but her appointment people are there regular hours. And she is brilliant, but her bedside manner is horrible. I’ll take the brilliant part: we don’t need to be friends, she just has to have the wisdom to do what’s right for me!
If I read your name correctly, you are in PA?
Normally I wouldn’t say this because I don’t know the dr., but there is a thread in the announcements forum called GI ASCO 2012 Abstract Synthesis and Updates
In it they talk about all kinds of tests. This is one of them. If you ARE in PA and near Philadelphia, maybe you can check this Dr. out for a second opinion?
• (Abstract #328) An interim evaluation of efficacy and safety of the combination of panitumumab, gemcitabine, and irinotecan in patients with advanced or metastatic cholangiocarcinoma: A phase II study. Presenting Author: Weijing Sun, Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA
I know nothing of this dr. except that he is the author of a cc study.
I hope this helps. Good luck and I’ll keep you in my prayers.
KrisJanuary 25, 2012 at 1:08 am #56883wallsm1Participant
I ran into something similar when I tried to get a second opinion at Mayo. I had finished chemo and was about to start radiation but wanted a second opinion before I started radiation. They said they wouldn’t see me if I was already involved in a treatment plan at another hospital. I explained I was going there for a second opinion about a treatment I haven’t started yet and was able to get an appointment. I did find it odd, though. I never thought I wouldn’t be able to get a second opinion during active treatment.
SusieJanuary 25, 2012 at 1:08 am #56882RandiParticipant
I had a similar experience with Sloane Kettering. I tried to set up an appointment for a second opinion and it was weeks before they would have been able to see me and I needed to start chemo. I called and spoke with someone and they said that they would not have a different protocol then what was suggested to me at my local cancer center.
I opted to go to Roswell Cancer Center in Buffalo since it was closer to home anyway and they could get me in pretty quickly. They did concur with my local doctors, but it felt good to get another opinion.
I don’t know where you are located, but there must be another large cancer center that wouldn’t make you wait that long.
Others will probably have advice for you and your sister. I am so sorry that your sister and you have to go through all this.
My best wishes.
-Randi-January 25, 2012 at 12:54 am #6250
i am wondering if anyone has had any experience with this and can offer a suggestion. my sister had resection surgery a year and a half ago. she had a recurrance and a second resection was done in december. last week her oncologist gave her two options start a chemo regimine which would have started yesterday or wait 3 months for a scan and see if tumors come back and try chemo at that time. he said her cc is metastatic and he has no guarantees. now here is our problem. we decided to wait and try for a second opinion at sloane kettering. over the past few days we have been jumping thru hoops to get the reports they requested. it is sad that there is no streamlined way for hospitals to share reports but that is a whole seperate issue. anyway a few days ago the wait for an appointment was three weeks. yesterday as we were still running in circles the wait was four weeks. we finally got them all the documentation they wanted. we than received a call from the person who sets up appointments and were told they would not give us an appointment at all because she was suppossed to start chemo on monday. we have been trying to explain to them that we had an option to start chemo or not and wanted a second opinion but she wont listen and finally she hung up on us. does anyone have any suggestions.
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