CancerCompass message board discussion started by excelpro on 5/8/2008 http://www.cancercompass.com/message-board/message/all,23860,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi,My 78 yr mom was diagnosed last Friday and 3 stints were put in by CA Pac Med Ctr Tues.  She has one known malignant lymph node near the liver, cancer in the bile duct, a 3.5 cm mass in the liver near that vein (i can't recall the name(. Her Kaiser MD in Santa Rosa says he's seen a handful of cases (he looks young) Does anyone have info/resources about a UCSF or other local oncologist with more case experience here in N CA  with bile duct ?She is feeling good, eating well, not in pain but had 16 Bilirubin/Jaundice Friday which is why they did the CAT scan and the stints.  Her bilirubin is going down well now since the stints BTW CA Pacific Med Ctr in SF was awesome!They want to do chemo but I am unsure which approach would be best. I see that surgery can be used to cut out the bile duct and tumor.  I want to get a second opinion about this option, esp how risky surgery is, and why could they not just cut out the bad lymph node, tumor and bile duct and see if any other areas have cancer (CAT scan of upper torso was clear; they say they can do a PET scan to check other lymph nodes; I thought there was a blood test that checked tumor levels....still learning/grasping). She has no other health issues, walks and eats well. Any advice appreciated re: Kaiser system in N CA or nearby and/or UC resources in N CA or S CA. God bless you all,Carolyn  excelpro Thu, 08 May 2008 00:00:00 GMT  On 5/8/2008 excelpro wrote:Hi,My 78 yr mom was diagnosed last Friday and 3 stints were put in by CA Pac Med Ctr Tues.  She has one known malignant lymph node near the liver, cancer in the bile duct, a 3.5 cm mass in the liver near that vein (i can't recall the name(. Her Kaiser MD in Santa Rosa says he's seen a handful of cases (he looks young) Does anyone have info/resources about a UCSF or other local oncologist with more case experience here in N CA  with bile duct ?She is feeling good, eating well, not in pain but had 16 Bilirubin/Jaundice Friday which is why they did the CAT scan and the stints.  Her bilirubin is going down well now since the stints BTW CA Pacific Med Ctr in SF was awesome!They want to do chemo but I am unsure which approach would be best. I see that surgery can be used to cut out the bile duct and tumor.  I want to get a second opinion about this option, esp how risky surgery is, and why could they not just cut out the bad lymph node, tumor and bile duct and see if any other areas have cancer (CAT scan of upper torso was clear; they say they can do a PET scan to check other lymph nodes; I thought there was a blood test that checked tumor levels....still learning/grasping). She has no other health issues, walks and eats well. Any advice appreciated re: Kaiser system in N CA or nearby and/or UC resources in N CA or S CA. God bless you all,Carolyn Hello Carolyn,Sorry to hear about your mom. You need to understand that this is a very serious illness. Chemo or radiation are absolute no options for this type of cancer. On the contrary, most of the patiens are starting to feel a lot worse, sick and stop eating.When the liver is not too badly infected, surgery is a possibility. But that is not such an easy thing as you might think. It's not simply "remove the bile ducts and lymfe notes". The bile ducts are attached to and go over the liver, surgery means that also part of the liver must be removed. When the liver is too much infected, like with my husband, surgery is not possible.My husband (62) was diagnosed with this cancer last year and in spite of the life-prediction of 2-3 months, he is still doing very well today (a whole year later). That is because his defence system is very good and he is working on it to keep it good. He is eating well, and he does a lot of sport. He also still works and goes to his work on his bike, which is 10 kilometres from where we live. Doctors here in Holland are astonished about how he is still active and has no weight- or energy-loss. They stretch that must have to do with him being to positive and working on his defence system (antibodies are very high in his blood).I hope you can get the best treatment for your mom. Look at this bile duct site and you will find a lot of help and good suggestions. Will you keep me informed about how you are coping? Very often this is for the caregivers really as hard as for the patient and than it is good to get things "off your chest".Wishing you and your family all the best,Iris (the Netherlands). Flower1 Fri, 09 May 2008 00:00:00 GMT  On 5/8/2008 excelpro wrote:Hi,My 78 yr mom was diagnosed last Friday and 3 stints were put in by CA Pac Med Ctr Tues.  She has one known malignant lymph node near the liver, cancer in the bile duct, a 3.5 cm mass in the liver near that vein (i can't recall the name(. Her Kaiser MD in Santa Rosa says he's seen a handful of cases (he looks young) Does anyone have info/resources about a UCSF or other local oncologist with more case experience here in N CA  with bile duct ?She is feeling good, eating well, not in pain but had 16 Bilirubin/Jaundice Friday which is why they did the CAT scan and the stints.  Her bilirubin is going down well now since the stints BTW CA Pacific Med Ctr in SF was awesome!They want to do chemo but I am unsure which approach would be best. I see that surgery can be used to cut out the bile duct and tumor.  I want to get a second opinion about this option, esp how risky surgery is, and why could they not just cut out the bad lymph node, tumor and bile duct and see if any other areas have cancer (CAT scan of upper torso was clear; they say they can do a PET scan to check other lymph nodes; I thought there was a blood test that checked tumor levels....still learning/grasping). She has no other health issues, walks and eats well. Any advice appreciated re: Kaiser system in N CA or nearby and/or UC resources in N CA or S CA. God bless you all,Carolyn Hello Carolyn,Iris filled you in pretty well and I agree with just about everything she passed on to you.I don't need to add any additional information regarding the Bile Duct Cancer (Klatskin Tumor)By the way a PET/CTscan is very important...Cancer can not hide from a PET scan.If you are looking for a second opinion...contact ASAP...Doctor Ryutaro Hirose, Assistant Professor of Surgery, Transplantation and General SugeryUCSF Medical Center505 Parnassus Ave...San FranciscoPhone number: 415-353-1061If anyone can help, this is doctor you want, he saved my wifes life.Good luck...Leonard from Alamo      Solutions Mon, 12 May 2008 00:00:00 GMT  On 5/9/2008 Flower1 wrote: On 5/8/2008 excelpro wrote:Hi,My 78 yr mom was diagnosed last Friday and 3 stints were put in by CA Pac Med Ctr Tues.  She has one known malignant lymph node near the liver, cancer in the bile duct, a 3.5 cm mass in the liver near that vein (i can't recall the name(. Her Kaiser MD in Santa Rosa says he's seen a handful of cases (he looks young) Does anyone have info/resources about a UCSF or other local oncologist with more case experience here in N CA  with bile duct ?She is feeling good, eating well, not in pain but had 16 Bilirubin/Jaundice Friday which is why they did the CAT scan and the stints.  Her bilirubin is going down well now since the stints BTW CA Pacific Med Ctr in SF was awesome!They want to do chemo but I am unsure which approach would be best. I see that surgery can be used to cut out the bile duct and tumor.  I want to get a second opinion about this option, esp how risky surgery is, and why could they not just cut out the bad lymph node, tumor and bile duct and see if any other areas have cancer (CAT scan of upper torso was clear; they say they can do a PET scan to check other lymph nodes; I thought there was a blood test that checked tumor levels....still learning/grasping). She has no other health issues, walks and eats well. Any advice appreciated re: Kaiser system in N CA or nearby and/or UC resources in N CA or S CA. God bless you all,Carolyn Hello Carolyn,Sorry to hear about your mom. You need to understand that this is a very serious illness. Chemo or radiation are absolute no options for this type of cancer. On the contrary, most of the patiens are starting to feel a lot worse, sick and stop eating.When the liver is not too badly infected, surgery is a possibility. But that is not such an easy thing as you might think. It's not simply "remove the bile ducts and lymfe notes". The bile ducts are attached to and go over the liver, surgery means that also part of the liver must be removed. When the liver is too much infected, like with my husband, surgery is not possible.My husband (62) was diagnosed with this cancer last year and in spite of the life-prediction of 2-3 months, he is still doing very well today (a whole year later). That is because his defence system is very good and he is working on it to keep it good. He is eating well, and he does a lot of sport. He also still works and goes to his work on his bike, which is 10 kilometres from where we live. Doctors here in Holland are astonished about how he is still active and has no weight- or energy-loss. They stretch that must have to do with him being to positive and working on his defence system (antibodies are very high in his blood).I hope you can get the best treatment for your mom. Look at this bile duct site and you will find a lot of help and good suggestions. Will you keep me informed about how you are coping? Very often this is for the caregivers really as hard as for the patient and than it is good to get things "off your chest".Wishing you and your family all the best,Iris (the Netherlands). Dear Iris,Thank you for your reply.  I did not get the "notify" email in my inbox, so please excuse the delay. I have been checking email everyday since this post, and for some reason, your message did not come through. Thankfully Leonard figured out I had not replied and sent me a note to say you had. We have an appt with a surgeon for May 22 who is expert in this type of surgery in SF.  I appreciate your encouraging words and amazing outcome so far for your husband.  My mom is unsure about chemo, as am I, which is why we are seeing a surgeon first.  She is eating well, feeling well, and seems very healthy now that the stents are working to drain the bile duct. I have also looked into PDT therapy but it requires that you travel to Virginia, far from California and it is not a cure, but a palantive measure. God bless you and your husband and thank you for sharing your story. Regards,Carolyn   excelpro Tue, 13 May 2008 00:00:00 GMT  On 5/12/2008 Solutions wrote: On 5/8/2008 excelpro wrote:Hi,My 78 yr mom was diagnosed last Friday and 3 stints were put in by CA Pac Med Ctr Tues.  She has one known malignant lymph node near the liver, cancer in the bile duct, a 3.5 cm mass in the liver near that vein (i can't recall the name(. Her Kaiser MD in Santa Rosa says he's seen a handful of cases (he looks young) Does anyone have info/resources about a UCSF or other local oncologist with more case experience here in N CA  with bile duct ?She is feeling good, eating well, not in pain but had 16 Bilirubin/Jaundice Friday which is why they did the CAT scan and the stints.  Her bilirubin is going down well now since the stints BTW CA Pacific Med Ctr in SF was awesome!They want to do chemo but I am unsure which approach would be best. I see that surgery can be used to cut out the bile duct and tumor.  I want to get a second opinion about this option, esp how risky surgery is, and why could they not just cut out the bad lymph node, tumor and bile duct and see if any other areas have cancer (CAT scan of upper torso was clear; they say they can do a PET scan to check other lymph nodes; I thought there was a blood test that checked tumor levels....still learning/grasping). She has no other health issues, walks and eats well. Any advice appreciated re: Kaiser system in N CA or nearby and/or UC resources in N CA or S CA. God bless you all,Carolyn Hello Carolyn,Iris filled you in pretty well and I agree with just about everything she passed on to you.I don't need to add any additional information regarding the Bile Duct Cancer (Klatskin Tumor)By the way a PET/CTscan is very important...Cancer can not hide from a PET scan.If you are looking for a second opinion...contact ASAP...Doctor Ryutaro Hirose, Assistant Professor of Surgery, Transplantation and General SugeryUCSF Medical Center505 Parnassus Ave...San FranciscoPhone number: 415-353-1061If anyone can help, this is doctor you want, he saved my wifes life.Good luck...Leonard from Alamo      Dear Leonard,Thank you for this information and for some reason, the other replies did not link to my email.  I spoke at length with Marion,who lives here in Santa Rosa last Friday.  Thank you for taking time to email me again.  I have two teen children living with me part time who just came back Friday and I did check email frequently.We have an appt as of yesterday with Dr. Lawrence Way also of UCSF. I am happy to hear your wife was saved by surgery.  We will meet next week with him and I'll ask about the doctor you mentioned.  Can you give me some more information about how your wife is doing after the surgery now and how much of her liver was affected by the cancer growths?  This is very encouraging that the surgery has been so successful.  May I ask her age?  Thank you again for sharing your story with me.  God Bless you and your wife,Carolyn  excelpro Tue, 13 May 2008 00:00:00 GMT  On 5/13/2008 excelpro wrote: On 5/12/2008 Solutions wrote: On 5/8/2008 excelpro wrote:Hi,My 78 yr mom was diagnosed last Friday and 3 stints were put in by CA Pac Med Ctr Tues.  She has one known malignant lymph node near the liver, cancer in the bile duct, a 3.5 cm mass in the liver near that vein (i can't recall the name(. Her Kaiser MD in Santa Rosa says he's seen a handful of cases (he looks young) Does anyone have info/resources about a UCSF or other local oncologist with more case experience here in N CA  with bile duct ?She is feeling good, eating well, not in pain but had 16 Bilirubin/Jaundice Friday which is why they did the CAT scan and the stints.  Her bilirubin is going down well now since the stints BTW CA Pacific Med Ctr in SF was awesome!They want to do chemo but I am unsure which approach would be best. I see that surgery can be used to cut out the bile duct and tumor.  I want to get a second opinion about this option, esp how risky surgery is, and why could they not just cut out the bad lymph node, tumor and bile duct and see if any other areas have cancer (CAT scan of upper torso was clear; they say they can do a PET scan to check other lymph nodes; I thought there was a blood test that checked tumor levels....still learning/grasping). She has no other health issues, walks and eats well. Any advice appreciated re: Kaiser system in N CA or nearby and/or UC resources in N CA or S CA. God bless you all,Carolyn Hello Carolyn,Iris filled you in pretty well and I agree with just about everything she passed on to you.I don't need to add any additional information regarding the Bile Duct Cancer (Klatskin Tumor)By the way a PET/CTscan is very important...Cancer can not hide from a PET scan.If you are looking for a second opinion...contact ASAP...Doctor Ryutaro Hirose, Assistant Professor of Surgery, Transplantation and General SugeryUCSF Medical Center505 Parnassus Ave...San FranciscoPhone number: 415-353-1061If anyone can help, this is doctor you want, he saved my wifes life.Good luck...Leonard from Alamo      Dear Leonard,Thank you for this information and for some reason, the other replies did not link to my email.  I spoke at length with Marion,who lives here in Santa Rosa last Friday.  Thank you for taking time to email me again.  I have two teen children living with me part time who just came back Friday and I did check email frequently.We have an appt as of yesterday with Dr. Lawrence Way also of UCSF. I am happy to hear your wife was saved by surgery.  We will meet next week with him and I'll ask about the doctor you mentioned.  Can you give me some more information about how your wife is doing after the surgery now and how much of her liver was affected by the cancer growths?  This is very encouraging that the surgery has been so successful.  May I ask her age?  Thank you again for sharing your story with me.  God Bless you and your wife,Carolyn Good Morning Carolyn,I really hope your mom is doing well this morning.  I'm pleased to hear your mom will be seeing Dr. Lawrence Way at UCSF. My wife (Karen) and I have not had any contact with Dr. Way, but I am sure he fine doctor and will help you and your mom through this next step.In the UCSF directory I noticed Doctor Way's specialties are Gastrointestinal Cancer and Surgery.  When Karen was admitted to UCSF her doctor was a specialist in the same field as Doctor L. Way.Karen was diagnosed with stage IIB Klatskin Tumor (extrahapatic bile duct) cancer. Because Karen's cancer was so involved in the liver her primary surgeon requested the assistance of Doctor Hirose, who specializes in Liver Transplantation. I turned out that doctor Norton stated the surgery, but because the liver was so involved Karen's liver specialist took over.  My wife surgery lasted 14 hours...it was a real nightmare. I mention this to you because the same situation may happen, your mom's surgery may be handled by tow or even three surgeon's.Well I will try to make this information not overly detailed...sometimes we can go on overload when talking about it.The surgery was done in July 2003. They removed 2/3 of Karen's liver. removed the entire common bile duct. Removed the hepatic artery which was grossly involved, the gallbladder and the cystic duct even though they were not diseased, they also removed 2 lymph nodes. As I mentioned previuosly the surgery lated 14 hours...7 hours to remove the tumor and the other items I mentioned above...they took another 7 hours to restructure a new digestive system. Doctor Hirose had to do a Roux-en-Y procedure (not a Wipple procedure as many people may ask) to allow bile to flow from the liver to the digestive system.Karen stayed in the hospital for about 4 weeks, there were complication that surfaced as expected with this major surgery. There were infections, drain catheter's need to be inserted to allow the bile to flow to the new small intestine made common bile duct. It was a very slow recovery at the hospital and even worse at home. On one ocassion infection was so bad that the fever spiked to 103.5 , the blood pressure dropped and the body chills was very bad. Don't be surprised if this happens, be ready to handle the situation. Have phone number at hand especially night and weekend numbers. Of course we didn't know all this at the time so when all this happens you don't really respond well...now we do, but then we didn't We live in Alamo and as you know UCSF is in SF approximately 40 miles way. The 911 crew would only take Karen to a Contra Costa Hospital (John Muir Medical Center) Walnut Creek. Of course their ER department had no clue on how to handle the situation. After getting Karen's vitals back in order the air lifted her to UCSF for another 2 weeks stay.Carolyn...this and other things will happen...you just need to be ready and keep a cool head and sometimes it's eaiser said then done.Well...all went well for about 3 years. When I say went well, I don't mean without any issues...we still had the CTscans to do, Karen also had two external drain catheter's that I needed to flush daily plus other issues too many to mention at this writing...keep in mind, you can email me through Cancer Compass and ask anything you want and i will respond.As I was saying previously everything went pretty well for 3 years.  In December of 2006 a CTscan showed a small 3.1 mm tumor in one lymph node. Very devasting for Karen and the family.  But the UCSF group rolled up their sleeves and went to work. The UCSF Tumor Board met and desided because of the major surgery done in 2003 and all the scare tissue issues surgery was not an option...Karen went through oral Chemo and two very sophisticated radiation treatments, saved her life.The radiation therapy used on Karen was state-of-the-art technology and if you haven't guessed yet...Karen's health insurance carrier denied the treatment.  I had to file appeals and appeals and then file a third appeal for an IMR with the Sate Of California before it was approved.  But in the mean time I was requested to start making payments...all turned Okay, but at the time when fighting for your life is the most important thing facing you and then having to deal with the insurance company...well I save that story for later.But if you are interested in that segment of what can happen, Karen was co-featured on CBS News (KPIX) on May 5th. Here is the link http://cbs5.com/investigates.cyberknife.blue.shield.2.716740 also if you care to read Karen's brief story on the accuray site.You can go to www.accuray.com  place the arrow on [Patients] move the down to Patients Stories and click on it. scroll down to Karen's story, it's on the last page.Carolyn...surgery and the additional treatments have been very successful. Yous asked about Karen's age.  I realize you mom is 78 years old, but I think I also read in your message that she is pretty healthy other then this issue...this is very important for surgery and recovery. By the way karen was 53 at the time of surgery and will be 58 this this year...One thing you must realize, this cancer does not have a lot of reaserch behind it...so when things suface don't be surprised if the doctor is also surprised.Well eonugh of my rambling, i hope some of the information is helpful. As I mentioned previously, I will respond to any question you may have regarding this matter.Also keep in mind...to do a good job in care-giving you must stay healthy yourself and sometime it's hard...When my wife was in the hospital I thought I was doing okay but I lost 25 pounds, I blamed it on all that hospital food but as we know it was all stress.Take care...talk to you later...Leonard from Alamo.PS...Hey Iris, thanks for the polite tongue-lashing...I needed that...Hope you and Peter are doing well.  her doctor's at UCSF told her she will out live them...I dought it...they are all in the                  Solutions Tue, 13 May 2008 00:00:00 GMT CarolynDon't rule out chemo using DAVANAT.  DAVANAT is a targetting agent for the chemo that takes it right to the tumor.  DAVANAT works off of the Galectin-1 receptor overexpressed with this and other types of cancer.  Before your do surgery you should check into this Cholangiocarcinoma trial. Its on Clinicaltrials.gov under cholangiocarcinoma.  #39 YES - I'm telling you that you should consider this treatment before surgery.  That is how effective this treatment is.  Just look at the clinical trial results.  It's way better than the standard of care and the longevity data is remarkable.  The drug company is Pro-pharmaceuticals. Let me know if you need help.  A friend of mine got a compassionate use treatment using DAVANAT and in about 3 weeks when they do the PET scan I would not be surprised if she close to remission.  She started 6 weeks ago and went from constant pain to no pain from the bone metastis.  Mike Topgun Fri, 16 May 2008 00:00:00 GMT