October 10, 2013 at 5:18 pm #76367
In less than 48 hours, I can say I am amazed at the support I’ve gotten from this forum. Thank you so much. I had several personal emails (note to future members, PLEASE put your email contact in your profile). I have spoken to Dr. Chapman’s nurse and my doctor and they are making arrangements to get my records up there for review, which he can do initially without my being there. If necessary, I can hop a plan to St. Louis.
In the meantime, I am scheduled for the PCT on Monday, as Dr. Goldstein feels it is urgent to decompress my liver. That is going to have to be done no matter what else happens. It doesn’t sound fun at all. I’ll be having it at Baylor, which is less than a mile from my husband’s office and our house.
LisaOctober 10, 2013 at 1:39 pm #76366mcwgoatParticipant
I’m sorry to hear the news was not good. You are in my prayers for both the conversation you have to have with your parents and the decisions you have to make regarding treatment.
I know what you mean about feeling like your brain is working at half speed. Once you can gather your thoughts, and look at your notes, maybe you can see if the procedure they’re planning for Friday or Monday can be put on hold while you get a second opinion. Once you go over your notes you may have a lot more questions. If that turns out to be the case, call Dr. Goldstein’s office and see if you can talk to him. That may help you make a decision.
My thoughts and prayers are with you.
MaryOctober 10, 2013 at 4:52 am #76365lisacraineParticipant
Sorry for the late welcome. You have found a wonderful group of caring and loving friends in this site. I am a three year survivor. If you would like to talk about any of the treatments I’ve had please call me at 330-903-6868.
Lisa CraineOctober 10, 2013 at 2:08 am #76364RandiParticipant
I am a little late to this thread, but wanted to add my welcome to all the others. This diagnosis is so devastating and seems to sneak up on otherwise healthy strong individuals. The good part is healthy strong individuals can handle all of the treatments better.
Itching was my first symptom, then came the white stools and dark urine. The itching kept me up at night and I used ice packs to try and help. I had a stent placed which relieved the itching. I was eligible for surgery and had a Whipple followed by 6 months of chemo (Gemzar).
I echo other people’s suggestions about getting a 2nd opinion. Doesn’t mean you change doctors, but it does help with decisions about treatment to get more than one opinion (I got 4!!).
Hang in there Lisa. You sound like you are a strong person in general and that will really help with all that you are facing.
my email address is: firstname.lastname@example.org if you have any questions for me or just want to talk.October 10, 2013 at 1:03 am #76363kvollandParticipant
Second opinions are always the best thing and I would second having MDA do that. I have heard nothing but good about them since joining this site. And just because they say no right now does not mean it will always be no. I have always said that there are new things on the horizon constantly with medicine and sometimes the answer is just over that horizon for you. You never know.
Hang in there and keep us posted.
KrisVOctober 9, 2013 at 11:11 pm #76362lainyParticipant
Lisa, the important thing is there are options. If the tumor is just over the size why can’t they use Chemo to bring it down or can you not have chemo if you want a transplant. Lisa, please think about another opinion, this is too important not to. Personally I would take a jaunt to MDA in Houston. About telling your Parents they may already think something is going on and to bring it out will give you all a relief/release. Wishing you the very best. Sending tons of hugs!October 9, 2013 at 11:01 pm #76361wallsm1Participant
Lots of support headed your way. Best wishes with your treatment.
SusieOctober 9, 2013 at 10:41 pm #76360kris00jParticipant
Oh, Lisa, I’m sorry. I so wished for better news! And I don’t envy you for your upcoming conversation.
As for your options: there are so many and more every day. Keep strong and you WILL get through this!October 9, 2013 at 10:24 pm #76359
Just a quick note to say that the meeting with Dr. Goldstein was not the news we hoped. I liked him – he is a straight shooter, but my tumor is not resectible and is just over the size to be eligible for transplant. He has some options, but they don’t seem all that great to me. I’m trying to calm myself down to go through the notes, figure out if I think I should get a second opinion (they want to get me in Friday or Monday for a something-or-other-procedure — sorry my brain is working at half speed right now). So, I have to make a decision fast. Trying to gather the strength to go tell my parents the news, which I’ve held back until we had a plan. This is going to be hard. I’m the one who had to go wake them up 2.5 years ago to tell them my little brother had died.
LisaOctober 9, 2013 at 8:06 pm #76358lainyParticipant
Lisa you have the security and comfort of knowing you are at a great Hospital with great ONCs. AND you have a great attitude. We are so proud of this site as we have the most caring and loving family the world over. When my Teddy was DX August of 2005 the people on this site got me through his 5 1/2 years and as of today I am totally addicted and just can’t stay away. Actually just over a week ago I announced I needed to tend to some of my own problems and could be off weeks/at least a month. Well, that lasted 5 days and I was back on. We love it when our members pitch in as somewhere someone has advice to give to help a family member. I am anxious to hear what the DOCs say.October 9, 2013 at 6:54 pm #76357
Thank you all for the replies! I had a friend tell me last year, while she was battling a brain tumor, that in times of tragedy, special people come into your life for a reason. That is true.
I expect to be an active participant in this forum.
I had two tests this morning – a chest/lung test of some sort (got to find out exactly what) and a whole body scan where they injected some radioactive dye.
I meet this afternoon with the surgical oncologist. My medical oncologist (I went by to get his report to read, myself, before meeting the surgeon) was less than encouraging about resection/transplant. But, we’ll see. My surgical oncologist is the surgical director of the pancreas and living donor liver transplant groups at Baylor. I’ve very fortunate to live where I live, as this is (I think I mentioned) literally down the street from me. Here’s his bio link: http://www.baylortransplant.com/surgeons/goldstein.html
So, I’m still waiting … but expecting more pieces of this puzzle to fall into place quickly.
LisaOctober 9, 2013 at 3:26 pm #76356mparsonsParticipant
I am so sorry to hear about your diagnosis, but am pleased that your team of physicians seem to be moving so quickly with your case. I spent too much time with my community doctors at the beginning, which slowed my diagnosis. Once I got to an academic medical center with knowledge of the disease things moved very quickly. It sounds like you’re in a good place.
The itching was my first symptom and, for me, the worst. They may do an ERCP on you and place a stent, which should give you good relief. For various reasons, that was only partially successful for me, and I’ve had somewhat elevated bilirubin during the entire two years I’ve been fighting this cancer. Two different physicians tried the usual treatments of cholestyramine and antihistamines with no real benefit. My hepatologist at USC put me on Rifampin. It is considered a second-line treatment for pruritis in these cases, but even so few physicians seem to know about it. He has a number of end-stage liver disease patients on it successfully, and it has been 100% effective for me. No itching! Anyway, if itching continues to be a problem, it’s something you could ask about.
Best wishes to you as you proceed toward treatment. You will find great wisdom and support here.
MarkOctober 9, 2013 at 2:05 pm #76355januaryMember
I’d like to give you a message of hope- we are still relatively new to all of this, so I don’t know if I’m out of line offering, but today is a good day- so I’ll risk it.
Our daughter, 29 years old, had some jaundice and itching (yes, maddening) and her doctor ordered an MRI on January 2. She had a biopsy on January 7, was diagnosed with cholangiocarcinoma on January 9, and we went to Sloan for a second opinion where she had a resection on January 16. They decided that because she is so young she would follow with 4 months of CIS/GEM. The whole experience was such a whirlwind that at times I literally felt dizzy. We learned a language we never wanted to learn and had an experience we wouldn’t wish on anyone, but we met extraordinary people along the way. Please seek out the very best hospital you can- people who are very experienced with this cancer.
As for your parents- having our be daughter be so sick was terrible beyond description. For them to go through this a second time- unimaginable. I hope you can find the right words, although I’m not sure they exist.
We don’t know what the future holds, but our beautiful, strong, brave resilient daughter is back home now with her wonderful husband of two years and their puppy. I hope her story helps you to feel optimistic as you navigate your way through this process.
JanuaryOctober 9, 2013 at 1:06 pm #76354jathy1125Participant
Lisa, and to copy others, “welcome and sorry you had to find us”. I am a CC survivor, I am almost 41/2 years cancer free. I have an amazing story to share and keep it posted at http://www.catherinedunnagan.com under the telegraph link. There is HOPE.
I also like most showed no symptoms, and only went to doctor because my neighbor made a comment about all my bruises and sores on my legs. I had been so itchy, but it was summer and we own a lawn care business and thought it was allergies!!! I also like you, ended up with a doctor who did my first ERCP procedure and with in 5 minutes had a diagnose and game plan, my only HOPE was a transplant and once again one of the 2 place that had this trial was 20 minutes from my home, Barnes-Jewish Hospital in St. Louis MO. under Dr. William Chapman care. Thank God for neighbors and college roommates for saving our life!!
The most pro-active thing you can do is have the best most aggressive doctor, who knows all the CC treatment options. Make sure transplant is discussed and considered and option or not, by a doctor who believes it is. Many doctors have reservations about it. Do not accept a diagnose you are not comfortable with, get second and third opinions if necessary. I personally know my hero, Dr. Chapman has changed several people’s diagnose for the better. Our cancer is very rare and needs the best doctors. This site is a blessing and well of information for getting through this “nightmare”!!!
Call (618-567-3247) or email if I can help.
Lots of prayers and HOPE-CathyOctober 9, 2013 at 5:54 am #76353gavinModerator
Welcome to the site. Sorry that you had to find us all here and sorry to hear what you are going through as well. But glad that you’ve joined in with us all as you are so in the right place for support and help, and you’ll get loads of each from everyone here. My dad’s first symptoms were also the jaundice and the yellowing of his eyes and yes, the itching drove him nuts as well. He had a metal stent fitted and that cleared up his jaundice quickly along with the itching too.
You say that you and your husband may be slightly obsessive about getting info re everything to do with CC, good! The better informed you are the better the decisions you will make when it comes to treatments and everything to do with all of this so please learn as much as you can. I know that everything happens so fast at first and yes, your head will be spinning with it all coming at you from all directions. Ours was too after my dads diagnosis and that took over 3 weeks to get the full diagnosis.
I hope that you keep coming back here. Please stay in touch and let us know how things go for you. We are all here for you and will help as best as we can. We know what you are going through and we care.
My best wishes to you,
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