June 3, 2008 at 6:23 pm #20216
Many thanks to all of you for responding, sharing your experiences – and caring. We will keep all of this in mind as we journey to a potential solution – we are waiting to hear from Pittsburgh about a date – expecting the week of the 23rd of June. Heather – and all the rest of you -I wish you God’s blessing as you continue your search at Loma Linda, or elsewhere. We will be thinking of all of you – as I have as I was “lurking” here reading over the last few weeks – and praying as you pray for us.
As for Mayo – did everyone read that Ted Kennedy left Boston and Mayo and went to Duke – had his operation there – will go home for chemo and radiation. I guess everyone is right – 2nd, 3rd – even 4th opinion of neccessary!
JoyceJune 3, 2008 at 4:35 pm #20215heatherkpMember
Hi there Joyce! As I was reading this post, it was as if I was reading our story. We were at Mayo in April as well! April 24-28 to be exact. We were scheduled for 2 weeks but ended up there only 5 days….the prognosis….the same as your husbands but with only 2 months to live! Here were are past that 2 month marker…Lee is undergoing the same chemo regimn as your husband as well….he gets extremely ill on Sunday nights….he receives therapy on Fridays in Phoenix…and is doing well…we are looking into Loma Linda in California…with high hopes of resection as well…I know exactly how you feel and would love to know the true answer as to why Mayo couldn’t and others can….we feel very frustrated with all of the time spent there not to mention the tremendous amout of money it had cost those supporting us…we got home and we found the medical bill from Mayo in our mailbox the very next day! Wow! talk about a slap in the face! I find it interesting that we have the same story…please know that through this we have learned to get opinion after opinion and have learned to trust God like we never have before! I am reminded daily by all not to give up no matter what…doctors can give us a diagnosis…but God is the one who truly does this and we know His is much truerer and hopeful….good luck and God’s blessings to you and your husband!
HeatherJune 2, 2008 at 8:43 pm #20214iris-aMember
First of all I want to wish you and your husband all the best. Seeking second and third opinions is never a bad thing. Some hospitals and doctors dare to go further than others.
My husband was diagnosed with cc last year May. Here in Holland the rule is, when there are metastasis, stop surgery. With my husband there was only one and they took it away for further investigation. Then they found his liver was too far infected and they broke off surgery.
Reading stories from all over the world, I have the feeling that your metanasties indeed are reason to not start surgery. The chance is huge that the spreading of the cancer speeds up when they touch them, whilst the bileductcancer itsself is normally very slow growing.
I very much hope things can be different for your husband.
Greetings from the Netherlands,
Iris.June 2, 2008 at 4:12 pm #20213marionsModerator
your advise of seeking other opinions is (in my mind) one of the most important decisions to make when encountering CC. There are different approaches to this cancer, and all should be considered when searching for treatment choices.
Thinking of you and the boys and sending best wishes.
MarionsJune 2, 2008 at 3:15 pm #20212billParticipant
I can only address your question #3. My wife, Kathleen, actually had two liver resections at Mayo Clinic, the second by Dr. Nagorney. Each time she was told the cancer was expected to return and each time it did. It was still worth it for her to have the surgeries and with additional treatments she ended up living a good life with cc for 5 1/2 years.
I love Mayo Clinic but they have a reputation for being selective about who and what they will treat. The cynical view is they want to have more success stories and better “numbers”. Mayo does not have all the answers and they are not perfect so I would not hesitate to consider another doctor’s opinion about going ahead with surgery. I don’t thing anyone has all the answers to cc so I am a believer that getting those second and third opinions is very wise.
Good luck to you.
BillJune 2, 2008 at 2:04 pm #20211
Thanks Kris – i am going to search and take it with us (the article). I want so badly to buy Butch time, but – don’t want to make a mis-step, either.June 2, 2008 at 9:50 am #20210devoncatParticipant
there are different opinions on lymph node involvement and surgery. I can almost swear I read an abstract on Pubmed that said that even with lymph node involvement, the average survival time was greater with surgery. If you really want surgery, search through Pubmed and show that article to a willing doctor.
KrisJune 2, 2008 at 12:45 am #20209
Jeff – thanks for the thumbs up – good luck with the hydrozine sulfate therapy.
Lisa – metanasty’s it is – a much better word, I think.
and Marylloyd – thanks so much for the info on Dr. Gamblin. I am so happy for you – it sounds real good.
I am feeling SO much better – just talking to you guys helps!
JoyceJune 2, 2008 at 12:03 am #20208jeffgMember
Hey Lisa.. metanasties, that is easier to spell and pronounce. I like it ! I like it! Ha! Joyce… After filling my gut with roast chicken I came to the conclusion that resection if possible is the right route in my opinion. For myself I decided also to look in to Hydrozine sulfate Therapy. If the doctor won’t do it for the cancer ,I’ll tell him he is doing it for weight loss. That means I’ll have to stop pain meds and anxiety med for a while. I think I can handle that for a few weeks to see if it works or not. we’ll see next week what the Onco has to say. Mary I’m so happy all is going well for you guys! Thumbs up!
Bless Ya !
Jeff G.June 1, 2008 at 11:51 pm #20207marylloydParticipant
I do have knowledge of Pittsburgh and Dr. Gamblin. We went to see him after my husband had an aborted resection followed by extensive radiation therapy and Xeloda at Ohio State, James Cancer Hospital. Because my husband had responded so well to his treatmen they weren’t sure what to do with him at OSU and I felt we needed a second opinion. Pittsburgh is actually closer to us so we went to see Dr. Gamblin. He did his own scans there and basically verified what the OSU Docs had said, that the tumor was gone. That was 17 months ago and so far there has been no recurrence. We have decided that if he does suffer a recurrence that we will go back to Pittsburgh for treatment because they are very much on the cutting edge of liver cancer treatments. OSU has basically done all they are able to and I’m very grateful for their very aggressive approach of IMRT radiation and brachytherapy. It obviously worked wonders for my husband. Pittsburgh does not do radiation therapy but have other treatments they use and I do believe are more aggresive in their surgical approach. Anyway I hope this helps and best wishes for a successful surgery. You will be in good hands! Take care. MaryJune 1, 2008 at 11:39 pm #20206
Thanks Jeff – that is how we have seen it, also – but – that mets thing really scares us, as we also feel that Dr. Nagorney has the experience and credentials to warrant listening to! I have read so many posts on this site, and am so encouraged when I see the number of years you have won yourselves – people like you, and many others, by bravely fighting this terrible enemy. This is such an inspiration for us “newbies”.
We were so hopeful when we went to Mayo – we didn’t even realize that so few people were able to have a resection. Now we are afraid to get our hopes up again – but – we will go and find out in any case. I have read this over and over again on this site – but – Butch is my best friend in addition to my husband. and – I want him well. He is 66 – 67 in December, and it was hard to understand the diagnosis – his bile ducts have not plugged up or anything, so it is hard to believe that it got this far and this bad – w/o any symtoms, but – I guess that is normal for this disease, also. He has had Primary Sclerosing Cholingitus for about 6 years, but – no real symtoms from that either. It is all kind of surreal, which you have probably heard MANY times before. Actually, he has more side effects from the pulmonary embolism than from the cc!
Thanks for the advice – JoyceJune 1, 2008 at 11:29 pm #20205lisaParticipant
As Jeff said, this cancer reacts so differently. I am also undergoing gemcitabin along with xeloda. I had exploratory surgery with the hope of resection, but that was nixed when the surgeon discovered that the tumor was involved in the IVC. So no resection and no liver transplant was possible, even though I don’t have metastasis yet. I hope that Butch’s outcome will be different. It’s good that you found a surgeon willing to take him on. Best wishes – I hope they get all the cancer out.
(Metastasis is hard to pronounce and spell. Can we just call it “metanasties”?)June 1, 2008 at 10:32 pm #20204jeffgMember
Hi Joyce…. No knowledge of the aggressiveness of University of Pittsburgh. I have heard they are a good institution and nothing negative. Dr Nagorney was my surgeon over nine years ago He is the Professor of Surgery, Gastroenterologic and General Surgery at Mayo. My personal feeling is he is a super surgeon. I consulted with him a couple years ago about possibally during surgery again and he basically told me there was nothing he could do as it had mets and stated it was systemic and surgery would not help. Now with that being said Dr.Gamblin may feel he can do the resection of liver and remove the nodes as well. The thing sticking in my mind is if you have the resection your keeping the mass away from the portal vein and possibally giving yourself years of living, I’m using my self as an example but we all respond differently. Mine returned to the other lobe of my liver but away from the portal veins. At about the same time it mets to my lungs and now to my bones and soft tissue. So as far as Mayo turning him down was most likely due to they feel it is systemic because of the mets and would be subjecting Butch to surgery that would be of no help. Therefore recommending chemo. Chemo in the pass three years has done nothing for me except slow things done quite a bit. But again chemo reacts different on different people. I guess if it was me and Dr. Gamblin is aware of the node and is willing to go ahead with surgery it just may buy you years of life. I’m sorry if this was kinda blunt. I’m just telling it like I see it from already being there. Wish You and Butch the very best! Please do keep- in- touch. Hope is still in the air. You just never know.
Jeff G.June 1, 2008 at 9:12 pm #1261
My husband Butch wrote a couple of entries on this site before we went to Mayo, but has not written since. I have been hanging around, reading but not participating since our return, and would like to be part of your discussions, so I have decided to “jump in”.
On March 10, Butch had a blood clot in his leg which traveled to his lungs, and broke off in many pieces – a pulmonary embolism. The next day, while he was in intensive care, we got the results of a liver biopsy that was done on March 6th – bile duct cancer, which lead to a 7 centimeter tumor on his liver. Here in Upstate NY, not much is known about this dreadful disease, so we made arrangements to go to the Mayo Clinic in Rochester, Minn., upon recommendation of some of our Doctors. Our appointment was for April 7th, and we saw Dr. Lewis Roberts. We were there over 2 weeks, for testing and final diagnosis. After a biopsy on April 17, they reported the lymph nodes were negative, and Dr. David Nagorney agreed to go ahead with Liver resection on April 23, BUT , he needed to do a laparoscopy first, as he was suspicious of a malignancy in the lymph nodes , as his CA 19-9 readings were VERY high – 20000 at Sayre Packer back home, 30000 at Mayo, and he felt that indicated a malignancy aside from the liver tumor. The tumor – by this time – was 8 centimeters, but was all in the right lobe of his liver and the portal vein was Ok. He did 3 lymph nodes, and the 3rd (a nodule in the diaphragm) WAS malignant, with what he described as a
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