Looking for Help
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Dear Joe, if YOU feel in your gut (I practice Gut Medicine 101) that you want another opinion, go for it. Sometimes when 2 doctors disagree its good to get a 3rd one in there for a consult. I am sorry to hear your Mom got so sick but I would also suggest calling one of the Docs to relate what is going on as there are so many RX that can be given for her comfort. As far as ‘others’ trying to give opinins on what should be done, you know that this is a very rare cancer and since you seem to be the care taker, and doing a great job of it, perhaps you can find a nice way of telling them to let you do your job. I always feels that is extra pressure not needed. Best of luck on what you decide to do and please do keep us posted.
Question for all? We are now at home after leaving hospital last night. My mother is not doing well after her second stint of chemo yesterday. She has not eaten allday and has stayed in bed sleeping. I’m concerned by the fact she has not wanted to eat? Is this common? Second question, we have had two very dim prognosis given by two qualified oncologist. Do I look for a third prognosis from another oncologist? I’m getting mixed results from family and friends. Please Help.
Cathy….Appears that Dr. Logan has relocated to Fresno, Ca.
http://www.universitymds.com/index.php?req=core_viewprofile&u=338Joe, bless your heart, my love and prayers go out to you and your mom. Everyone above has just about said it all. I just wanted to add my sincerest regards to your family as you start this experience.
God bless you all.Joe, I am sorry. My mom too was diagnosed at 62. We have always done our second opinions with Dr. Lenz at USC. Also, UCSF and Stanford are really good. I was thinking of going up there. However, a friend of mine, whose mother is treated at Stanford, said that if we were being seen by USC we were in the best hands. Dr. Lenz’s staff always did whatever they could to get me mom in quickly.
I know money is not an issue when it comes to this. However, my mother put off getting a second opinion for several months. Her insurance would not pay for it. They were in a money crunch with the economy (my mom was a real estate agent). I offered to pay for it, but she wouldn’t let me. Finally, I just made the appointment and paid. USC was about $500. Whereas, city of hope wanted $1500
Best of luck. My heart is going out to you guys right now. Every thing is tough with this disease, but all the unknowns at the beginning are the toughest.
Joe- Welcome and sorry you had to find us. I am a CC survivor. I am from the St. Louis MO. area and one of my miracle workers has relocated to UCSF. Her name is Dr. Susan Logan, the woman is beyond words. I am alive because she would not give up, even when I had flat lined for way to long.
Lots of prayers-CathyJoe….you would want to contact the office of Dr. Alan Venook.
http://cancer.ucsf.edu/people/venook_alan.phpI am not sure as to whether they will accept lab reports only or, whether you need to make an appointment and appear in person. It is well worth the trip, though.
Dr. Kelley also is the same office: http://cancer.ucsf.edu/people/kelley_katie.php
Often time
University of California San Francisco
San Francisco, CA, USA
http://www.ucsfhealth.org
Information:Requesting an Appointment
Patients Pre-Admission InformationContact Links:
cancerresourcecenter@ucsfmedctr.org
or call 1-415-885-3696This Hospital is very good and in your neighborhood, I think. We have a Category called Hospitals on our Home Page where you can look all the recommendations over.
We are located in Sacramento California and my mother is in her early 60’s and was extremly active with no health issues prior to her diagnosis. She is currently at Sutter General in Sacramento. We have already had a second opinion with the same prognosis. Which are the best reports/labs to send to Mayo in Rochester? Does anyone have a contact at Mayo in Rochester? Any other suggestions on Hospitals to send reports/labs? Thanks, Joe
Dear Joe,
Attitude plays a big part in fighting this terrible cancer. My husband was diagnosed just over 3 years ago with Stage 4 intrahepatic CC. They told us if surgery didn’t take care of it, we had no other options. John had 70 percent of his liver removed, his right kidney, gallbladder, part of stomach, and part of his colon all at the same time. The surgeon thought he had gotten everything but at his 3-month scans, spots showed up on the part of liver that was left. They decided to wait until his next 3-month scans and by that time he had multiple tumors. The surgeon acted like there was nothing that could be done but John’s oncologist talked with other doctors around the country and they decided to treat him with the chemo they use on metastatic colon cancer. He tolerated this very well until his 17th treatment and then had a very adverse reaction. The oncologist is now treating him with gemzar/cisplatin/avastin. He just had scans on Monday and we go tomorrow to meet with the oncologist to find out the results. His August scans weren’t good and the oncologist said he would check to see if there were any trials that John qualified for. I’m anxious to find out the results. All I can say is don’t give up; stay strong for your mom and keep fighting. Sending good wishes your way, PeggyP
Joe, I am so sorry your family is going through this. My mom was diagnosed exactly one year from tomorrow 10/7…it has been tough on all of us. There are other things they can do. None of my moms doctors were encouraging, but we kept trying. Where are you located…state?
Dear Joe, welcome to our wonderful family where you will find the most courageous and caring people in the world. I am so very sorry to hear about your Mother. I guess the best I can tell you is that we are big believers in second opinions. I would certainly see what another ONC would have to say. There are clinical trials but she would have to fit the peramiters. Where is she being treated? Is it a hospital with experience with CC and are the Doctors experienced with CC? How old is she? I would also ask the doctors how long the chemo will extend her life because if only for a month or so she may prefer quality of life. Again, I would gather all her test results and LAB work and send it to another hospital like Mayo in Rochester, MN and see what they have to say. Wishing you the best and please keep us posted, we care.
Hi Joe,
I’m sure one of the more experienced members will chime in soon, but I just wanted to welcome you to this amazing site. Everyone on here is so helpful and has gone through this all before. How old is your mom? Which hospital are you going to? Due to the rarity of this cancer, finding a doctor that is knowledgeable and has experience with CC is key. It’s not easy, but try not to listen to timelines as many people on this site have long surpassed them! My mother (57 yrs old and otherwise very healthy) was diagnosed July 4th with Stage IV CC with >30 tumors on her liver. It’s extremely difficult, but we just try to take it one day at a time. Keep fighting!
~KatieHello, my mother was diagnosed with stage 3-4 Cholangiocarcinoma just three weeks ago. She has one large tumor and multiple other tumors on her liver mainly around the bile ducts. She is currently in the hospital trying to fight the jaundice the cancer is causing. The doctors have tried a stent with no luck as the tumors have blocked/clogged it so they placed two external bags one for each side of her liver for drainage to control the jaundice. She just started chemo last Friday and will have a second dose tomorrow. We have been told surgery and transplant are not an option and there are no clinical trials available. The doctors have told us the prognosis is not good and the chemo is only being done to extend her life as long as possible. Any help with suggestions on what to do next would be appreciated. I feel as we have been told by the doctors to just sit back and let the cancer take her. I do not agree. Thanks, Joe
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