Brother and intrahepatic CC
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Thanks for everyone’s response.
Marions, my brother is scheduled to telecon Dr Robin Kelley at UCSF for a second opinion review. I’ve seen Dr Kelley’s name mentioned on this forum.
Cathy, I will be looking up Dr Chapman at Barnes-Jewish Hospital.
John Thomas, I’ll definitely try to look up Dr George Fisher at Stanford.
Charlea, thanks for the info. I’m trying very hard not to be overly sensitive about ANY observations of my brother, but I’m asking about bones because my brother had a strange mild pain in the arc of his right foot. As he described it, it was not a sports injury, the pain appeared one day (about a week or two before chemo started) and persisted a several weeks now. He mentioned to his PA at one of his pre chemo meetings and the PA did not think it was anything notable. I’ll mention it again to him, but I’ll try not to be overly sensitive about these things.
John….would you mind adding Dr. Fisher to this link?
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
thanks a bunch,
MarionPaul,
I suggest Dr. George Fisher at Stanford as another resource. I was told I had inoperable, incurable ICC two years ago. I chose Radiation, Xeloda and Gemzar as therapy. I stopped treatment a year ago. My last MRI shows no metastasis and no disease progression. I believe your faith and your will are major factors in living with this disease. Our prayers are with your brother and family.
Best wishes,
John Thomas
Paul, you asked how my hip cancer was found. I have had pain in my right hip for several years attributed to bursitis. X-rays were normal over the years. I went to my regular doctor when I had so much pain that I had to use a cane. She ordered an x-ray which was normal but the pain continued to progress so that I needed to use a walker. My oncologist then ordered the bone scan just to be sure it wasn’t something else and that’s when they found the met. 3/4 of the bone had been replaced by tumor so it was pretty remarkable that my hip had not fractured. Whole body bone scans can be done if indicated but that would be up to your oncologist. I have so much severe osteoarthritis that pain for me is not necessarily an indication to do a bone scan for bony mets. I wish the best for your brother and hope that all the help you receive here from experienced others will lead you in the right direction. I will keep your brother in my prayers.
CharleaHi-Paul, Welcome and sorry you had to find us. I am a CC survivor I will be 2 years cancer free this month due to a liver transplant trial. My miracle happenned at Barnes-Jewish Hospital in St. Louis MO. (It is considered a cholnagiocarcinoma center). My doctor was Dr. William Chapman. I suggest you call the liver transplant department.
My local paper did my story (thetelegraph.com under christmas miracle) I suggest you read it for a bit of hope.
Lots 0f prayers-Cathypaul…UCSF sees quite a few CC patients in fact, several of our members have been treated at this major institution. Which physician are you to see?
When this site had been developed the majority of members similar to your brother had been runners. It made us wonder as to whether there was a connection however, as the membership increased, we came to realize that this simply was not the case. This cancer strikes along all areas of fitness. And, it is a global disease.
If your brother is not responding to the current therapy then another one might just be the better choice.
I am crossing my fingers for the upcoming CT report.
All my best wishes,
MarionThanks everyone for your kind words. I find much comfort in talking to others.
Maria, my mistake on my bro’s treatment, he is on gem + cis, but will be switching to GTX this friday. More on this post:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=6197Charlea, thanks for sharing your info. One question that had been in my mind, how did you or your doc find the tumor in your hip? I’m reading that met to the bones is very rare, but searching the forum, I’ve found several patients with met to the bones. Currently, my brother only has been getting upper torso to lower pelvis CT scans, not at bones like arms and legs.
heartdoc, in his current condition, because of the ~20 lesions in both lobes of liver, transplantation has been ruled out by his doc. Also, I thought if the cancer has metastatized to lymphnodes, transplant will not work because of the high risk of spreading back to the new liver. Of course, our best hope will be a positive response to chemo, which hopefully leads to options like resection and/or transplantation.
Lainy, Gavin, I am working on more contacts with other hospitals for more opinions. With UCSF, we were directly introduced by a family contact with UCSF. How is the process typically done? I plan to just send out emails and phone calls to prospective hospitals and wait for a response.
Again, I have no doubts about his care at SCCA, but I recognize experience with this cancer will be very valuable.
I am also troubled by increasing number of young CC cases. With my brother, his lifestyle seemed to be minimal at-risk (non-smoker, casual alcohol, exercises/marathon runner, normal weight, job with low environmental exposure, etc…) which is why this is shocking, as with most CC cases. In fact, his doc deemed in such good shape to administer +25 to 35% more in his chemo dosages.
Unfortunately, we will wait to see if gem + cis is indeed not working, CT scan in two days.Paul, I also have intrahepatic CC with a large liver tumor in the left lobe and two lymph nodes in the abdomen and a recent discovery of a large tumor in my right hip and subsequent radiation treatment. Also had a chemoembolization of the tumor in my liver last July which appears to be successful. All of this has been done at Providence in Everett so that may be another option for second opinion. There is one other person on this web site who goes to SCCA so she may add her comments here. My prayers for your brother.
CharleaPaul, you are doing everything so right and are quickly becoming a great CC advocate. I love that you are reading up and finding out as knowledge is the most powerful in fighting CC. Like Gavin said, because this Cancer is so rare it is very important to ask about the Doctor’s experience with CC. I am most disturbed about so many younger people getting CC lately. Please keep us informed on your brother and UCSF.
Hi Paul!
I also have a lot of lesions spread all over. After a year still doing fine, and they all shrink.
I was on Gemzar+Oxaliplatin until feb, got sideffects, and now on Gemzar+Xeloda. Also done 3 chemoembolizations on the one big tumor that has gone from 6x7x8 cm to 2x5x5, also showing signs of turning into dead tissue.
So, what I wonder, why only Gemzar??
/MariaHi Paul,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your brother. But I am glad that you have joined us all here as you will get so much support from all of us. Please feel free as well to ask any questions that you might have and we will do what we can to help in answering them.
I know what you mean about being devastated with the news of your brother, I felt the same when we were told that my dad had inoperable CC. I can still remember how I felt on hearing this. That is great that your brother has such love and support around him and this is just what he needs right now, and you also have the support from all of us here as well. We know how you feel so come here as much as you want, scream, vent and shout if you want as well.
I agree with Lainy in your brother obtaining other opinions as well. Have you spoken with Dr Harris and asked him how experienced he is in dealing with patients with CC? Here are some links that may be of interest to you –
Major treatment centres in the USA –
http://www.cholangiocarcinoma.org/majorcancercenters.htm
And this is a list of treatment centres and doctors that was created by the members here –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
Please keep us updated on how your brother is doing and how you get on with getting another opinion for him.
My best wishes to you and your brother,
Gavin
Hi Lainy,
My brother is being treated at Seattle Cancer Care Alliance by Dr William Harris. We started the process to transfer all the current paperwork to UCSF for a second opinion.
I’ve read and learned so much in just a couple of hours on this forum, and I appreciates everyone’s inputs.
I do recognize that this forum promotes 3rd and 4th opinions, so I’m researching where to pursue next.
I’m in no position to question the great care that my brother is receiving at SCCA, but cholangiocarcinoma is such as statistically rare cancer, that not too much doctors and treatment centers have dealt with it.I posted his current progress and questions here:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=6197Our family support and love him very much because he is the “baby” of the family!
Dear caPaul, welcome to our wonderful family. I am very sorry to hear about your brother and am wondering where he is being treated and if you have thought about a 2nd opinion. It is so helpful when the family provides a united front as attitude is so important in fighting CC. Please keep us posted on your Brother’s progress with his Chemo. You have come to the right place.
Hi,
My brother, 33 years old, was diagnosed with intrahepatic cholangiocarcinomca on 4/13. The cancer has metastasize in his liver and 2 lymphnodes, but no signs of cancer any other organs. His liver has ~20 lesions and on both lobes, so resection is not an option.
He began a gem + cis chemo treatment on 4/22.Our family is devastated with this news, but we are all very supportive and praying for a good outcome.
I’ve been reading this forum for the last month and it has been very helpful with information. I appreciate everyone’s help on the forum.
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