vincently22
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Hello,
So we got a call back from City of Hope and they give us the appointment for mom on Dec 16th at 1:30 pm. Dr. Huan Giap (San Diego) told me he looked at the medical record and said that Y-90 radiation is an option for her. I emailed him back to ask if it means it’s “inoperable” but he hasn’t replied yet.Hello,
Sorry for not able to write much yesterday since I was busy studying for the exam today. Dr. Huan Giap’s assistant told me she just received mom’s medical record and will have Dr. Giap to look at it tomorrow once he comes in. Have a good day everyone!So we just found out that the case manager never did his/her thing. The oncologist told us that he thought they were working on it. Wow, they’re playing the blaming game omg. I’m gonna find out who that case manager is and I’m definitely will complain.
Hello,
I called City of Hope today to see if they have an appointment for mom but they didnt’. So I called back the oncologist from Garfield hospital and found out that he would have his assistant to do it sometime today and would request for the medical record. Seems like he wasn’t really following up but I dont know. Anyway, so my brother will bring the medical record to them directly so they could refer her to City of Hope ‘cuz if we wait for them to get the record, it’ll prolly gonna take another 5 days with the way they do things
I rescheduled the appointment with Dr. El-Khoueiry instead of Dr. Lenz (who referred me) ‘cuz he could give us an earlier appointment (Dec 18th). Mom is doing ok so far
Hello everyone,
My brother is gonna mail out the record to Dr. Huan Giap (San Diego) sometime today. I tried calling the oncologist (from Garfield hospital) to see the status of my mom but he wont’ be in till 2morrow and I left a msg for him to call me back tomorrow. It hasn’t been a week yet but I’m just worried and make sure he’s following it. It’s kinda frustrated. I also just emailed Dr. Lenz and asked him to look at my mom’s medical record.Thanks Lainy,
I’ll be calling Sandy on Monday or Tue to see if Dr. Lenz got a chance to look at mom’s medical record yet.Today my brother finally got a copy of medical report and a cd of all the scans. He brought it directly to Sandy (who works for Dr. Lenz) so she’ll give it to Dr. Lenz. I haven’t emailed Dr. Lenz yet. But Sandy said she’ll let him know about it and hopefully he can schedule it sooner than 1/5/09 at 2:30 pm. I’ll be contacting Dr. Huan Giap also to see if he’d prefer us to mail it to him or if he wants to request to get it from hospital since we just faxed him the form that was signed by my mom to agree letting him get a copy of it. I tried calling his office today but I couldnt get a hold of anyone, but hopefully they’ll either call me back or reply to my email
So I called Dr. Lenz office and he is booked for the month of December. So the appointment I got was Jan 5th but the assistant told me maybe it could be earlier if Dr. Lenz thinks the case is urgent.
This is the phone for the USC if anybody needs 323 442 – 5837Hello everyone,
Barbara,sorry to hear that you have go to through all of the dramas and still taking your time to answer my question/giving advices/opinions. I really appreciate it. Oh, I dont know if I take this as a good news for mom or not but you said they told you it was “inoperable” and you still did. Mom’s was at 5 cm about 2 weeks ago and I dont think it grew to 13 cm by now (gotta see the newest report which they said it’ll take about 5 days). So I’m hoping that it’s still “resectable”
To answer Marion, I have other siblings (5 total) and we do take turn to take care of mom. HOwever, I’m the primary person who is doing the searching/calling to specialists because my English is better than most of them (we are chinese/vietnamese).
Dr. Huan Giap sent me a form that needs to be signed by mom to release her medical record so he can evaluate and give his opinion. I think I should go ahead and do that since it doesnt hurt to hear more feedbacks from different doctors.
As for Dr. Lenz, I think I should call his office tomorrow to see what stuff I have to do in order to request him to be mom’s 2nd opinion doctor.
Good news, mom was discharged today and she is doing good. They provided us oxygen machine so she could use it at night time. I’ll keep everyone updated again tomorrow.Hello Barbara,
It’s good to hear that you’re still doing good. I’m just curious, when you first diagnosed with that back in 04, what stage was it at? Did they also say it was “inoperable” and that you had 6 months to live? Anyway, now i’m in the middle of everything. Now that you’re telling me Dr. Lenz is so good. So how often do you see him now? I mean I dont know whether if I should leave my mom to go with City of Hope or should I go with Dr. Lenz? Since you’re one of his patients, I wonder if you can bring up my mom’s case and ask him for advice? Thanks alot Barbara and I’ll keep everyone updated. Today i’m in school and my sis is with mom at the hospital. Hopefully mom will be discharge today. I’ve been waiting for this for a long time Hopefully it’ll happen.Hello,
I was at the hospital most of the day today so didnt get a chance to check this. Today she is doing good. The oncologist came by and saw her did her physical test with the physical therapist and he said she was doing very well. Anyway, they did an MRI of her abdomen (so they could send to City of Hope) and tested her blood to see how much oxygen she has. She was supposed to be discharged today but when the family doctor came, they hadn’t done the test yet and I dont think he would be coming again tonight and therefore she would be discharge 2morrow instead.
The oncologist told me to not worry ‘cuz he already had a plan and will have the case manager to contact City of Hope as soon as possible. So I am somewhat relieved a little bit. So at this point I’ll leave everything in their hands then.
So Dr. Huan Giap (San Diego) told me that he doesn’t charge to review medical record. I am thinking that I should just fax him the record anyway to see if his opinion will be the same as the specialists at City of Hope.Hello Lainy,
I just spoke to mom’s 2nd opinion GI doctor and he told me the reason why they want to wait for a week is because mom has other complications (hypertension, diabete and bad kidney) which will take mom about a week to fully recover (from incidences that just happened to mom recently). But while mom is being discharged, they’ll contact City of Hope to schedule an appointment for mom so the specialists there can evaluate what are the best options for mom. With that being said, I think he’s on top of his things so we’ll just have to wait.Hello Gavin,
Sorry to hear that your dad experienced the same thing. Please keep me updated with his status/results ok? Besides the stent, did they offer him chemo therapy or radiation?
So I was able to talk to the assistant/secretary of Dr. Simon Lo (GI specialist) and I found out that he just does is ERCP but not chemotherapy or radiation. So I guess that doesn’t really help much.
Dr. Huan Giap (San Diego) replied to my message and he told me to send him the medical reports and he’ll take a look at them. He does Therasphere, Cyberknife and brachytherapy. The only problem is that his office is in San Diego (2 hrs from where we live). Does anybody know if they would charge the fee for looking the medical record? Should I just stick with City of Hope right now? I wonder if they do offer Cyberknife also. I guess I’ll search for that info sometimes later today.
I requested information from UCI Medical Center regarding the Therasphere, but this is the msg I got “Unfortunately, we are only allowed by the FDA to use TheraSphere for the treatment of hepatocellular carcinoma (primary liver cancer). In our experience, untreated unresectable cholangiocarcinoma has a poor prognosis with an approximate survival period of 3-6 months.” So there is no hope with UCI.
After this experience, I realize that they all say different stuff and seems like the ones who dont know much about this type of cancer (never dealed with a patient with this type) seemed to give same answers “live 3-5 months, poor prognosis, chemo doesnt work but also decrease quality of life and radiation doesnt work either Anyway, so I learned to become stubborn and not believing in what they say. There are people in this forum who did chemotherapy and they said the side effects aren’t that bad. Well, if side effects aren’t that bad, then I dont see how that decrease their quality of life, and I would definitely trust the people to have had chemotherapy more than the doctors (who usually only go by textbooks).I just called City of Hope and they said that once mom is discharged from hospital, i can go ahead and refer her myself instead of waiting for the doctor. They said either way is fine. But I’ll try to refer by myself first b/c doctor wants to wait for a week to see if she’s healthy enough. I mean Im very frustrated. To me, whether she’s gonna be healthy enough, it’s just better for her to stay at city of hope and let the specialists make the decision of what to do with her. What if they think she’s healthy enough on day 3,4 or even 5. That is still 2 days earlier and chances are better. Maybe I dont know what the doctor (at the current hospital) and therefore he just decided to do wait, but I just think the sooner the better for mom. I’ll keep everyone updated.
Hello again,
Thanks for the info. I definitely will give mom the alternative treatment. Lulu, you’re right about telling them alternatives and they dont believe in it. Being doctors, they only try stuff that have been in studies. But at the same time, instead of going with “can’t treat it” I dont think it hurts to try other things (as long as they’re not poisonous) rather than doing nothing. I tried calling USC and the nurse will call me back and hopefully we can make an appointment for my mom as soon as possible. I’ll keep everyone updated.
