February 22, 2013 at 2:21 am #68209chezwrightaol-comParticipant
Rebecca…Call Dr. Choti’s office at Johns Hopkins. He was my surgeon 2 1/2 years ago and is absolutely WONDERFUL. When you call, if you have any problems, (which I don’t think you will with Ann who will answer), ask for a call-back from Eden (his nurse). Tell her someone (you can mention me) said to call. He will give you a full answer..is extremely competent and also kind. You will know where you stand and what the options are.
Best of luck. Sending all good wishes and lots of hugs,
Kathy WrightFebruary 22, 2013 at 1:09 am #68210rebeccadonohue72Member
Thank you all of your support and incredible advice. It feels like I already have another family extension who can help me (and my family) sort this out. The St. Louis oncologists have recommended that she go home and live out her life which is now estimated at 6 weeks (on the generous side). We were blown away when we heard this information. The team felt that she was not strong enough for chemotherapy and that she may not make it through chemotherapy.
Thank you for the Chicago referral. My father’s prostate cancer doctor has the file and is sending it to University of Chicago–it’s incredible how things come together and we believe it may be the doctor that was mentioned. We are scrambling for a second opinion, trying to be respectful of my mom’s wishes and keep our spirits up in front of her.
We are looking for a Johns Hopkins referral–I’ve started making phone calls to get her file in front of someone. If anyone has a specific Johns Hopkins referral, I would be so grateful.
Thank you all–it is clear that everyone at this forum is amazing, helpful and overall, finding a way to understand and cope with this disease.
RebeccaFebruary 22, 2013 at 12:49 am #68211pamelaParticipant
I can’t really add anything more than was already said. I wanted to welcome you to this site and tell you that I am sorry to hear about your Mom. It is so very hard to see someone you love not feeling well and wondering what to do. It makes a person feel very scared and helpless. I am hoping whatever is decided for your Mom’s treatment makes her feel better and she begins to improve. I hope you continue to update us on your Mom’s condition.
-PamFebruary 21, 2013 at 8:48 pm #68212gavinModerator
Welcome to the site although I am very sorry that you had to find us all. And I am sorry to hear about your mum. I first came here after my dads diagnosis so I know how you feel right now and what you are going through as well. I’m glad that you have joined us though as you are in the best place for support and help and I know you will get much of each from everyone here.
I know what you mean about trying to get your head around everything and it is tough to do with everything that you have to deal with right now. But from what you say it sounds to me as if you are doing everything that you can to help your mum right now and I know how much that will mean to her. Keep doing what you are doing and keep coming back here as well. If you have questions then ask away and we’ll do our best to help answer them for you.
My dads diagnosis was very similar to your mums in that they thought it may be gall bladder issues, then CC and it took aver 3 weeks to fully diagnose it. His CC was deemed inoperable and he had to decide as well about quality of life issues and treatment. He had a choice of chemo or PDT and he went for the PDT as he felt it would give his the best quality of life for the time he had left.
Like the others have said, chemo or not is not an easy decision to make and there is no right or wrong answers there. It is a personal choice to make and I know that your mum will make the choice that is right for her. When my dad decided to go for the PDT I told him it had to be his choice and I would support what ever decision he made.
I so know that your head will be spinning right now, mine was when I was where you and your mum are. But coming here and everyone here helped me so much and I am sure that this will be the case for you as well. So please, keep coming back here. We are all here for you and we care.
My best wishes to you and your mum,
GavinFebruary 21, 2013 at 5:49 pm #68207lindarParticipant
Hi Rebecca. We live in the Chicago area also. Despite all of our excellent medical facilities here, there is not a lot of expertise in cholangiocarcinoma. We consulted with Dr. Daniel Catenacci at the University of Chicago who is knowledgeable about cholangiocarcinoma and is conducting some clinical trials. I think U of C is the best choice in Chicago but we are also exploring options outside of this area so we will be prepared if this chemo regimen stops working. My husband is taking a very aggressive approach to fighting his cancer but this is not the right course for everyone. I wish you and your mother the very best.February 21, 2013 at 3:25 pm #68208RandiParticipant
Welcome to the site Rebecca and so sorry you had reason to you find us and so sorry that your mother is going through this.
As Lainy said the decision to do chemo or not is a very personal decision and once it is made my feeling is that you should own the decision and never second guess yourself. People often feel better once they have a plan in place and are moving forward. Sounds like you are doing that now.
We are all here for you, so visit often. I am sure others will come along with more information but I wanted to make sure I welcomed you.
-Randi-February 21, 2013 at 4:07 am #68213pcl1029Member
Why northwestern in Chicago? John Hopkins is a good choice for getting a complete picture on your mom’s current disease situation. Northwestern is famous in its interventional radiology treatment such as radioembolization but I will not choose radioembo for patient over 65 due to poor experiences on this message board at this point.( I am only a patient and not a doctor.)
If you live in Chicago, for chemotherapy consult, University of Chicago may be another place to go to. Base on the short description above, it looks like systemic chemotherapy is the only choice for tumor which had metastasized to other parts of the body.
Lainy’s suggestion above also holds true as well with regard to quality of life over quantity of life.
God bless.February 21, 2013 at 3:26 am #68214lainyParticipant
Dear Rebecca, welcome to our remarkable family but sorry you had to find us. First of all please know you are doing all the right things especially to seek out immediate other opinions. My husband had external side stents and after his Whipple Surgery 5 different ONCS and DOCS told him Chemo would not help him. We opted out but he still had pretty much quality life for 5 1/2 years and was 78 when he passed 2 years ago. I do have a hint to ease things up for you. Make a permanent e mail list and every evening sit down and send out an e mail with details to satisfiy family and friends, advise them that you just simply have to give all your attention to Mom and will try real hard to send out info each evening….so no phone calls please. It is just too tiring to keep repeating things and that you are all doing the best you can. This worked wonderfully for me. After that NO one bothered me, as they all waited for the nightly e mail.
Teddy was also on low doses of Morphine. Listen to your gut it will not steer you wrong. While we don’t like ONC’s giving up on us I would wait now for your other opinions to come through then decide what you want to do. To chemo or not is always the biggest decision and one the patient must make for themselves if they can. While we always try to stay realistically optimistic, sometimes the best way is to accept what cannot be changed and see to it that our loved ones stay as comfortable as they can. You have come to the right place and I promise you that once a decision is made and a plan is in place things will clear up for you all. Please do keep us posted as you are NOT alone, you have a whole new family who care.February 21, 2013 at 2:51 am #7833rebeccadonohue72Member
I just joined the foundation and am grateful that I stumbled across this in all of my google searches. My mom, who is 68, was diagnosed with metastatic cholganiocarcinoma, in either late stage 3 or stage 4, and it’s been a disaster. We are all trying to wrap our heads around this, manage questions from concerned family and friends while staying focused on getting her medically stable.
In short, everyone (including her internist) thought she had the stomach flu in early January. After 2 weeks, she was getting worse and by 2/9, she was jaundice, in pain and weak. We quickly checked her into a fantastic local hospital to find out that we had a cancer situation–first they thought it was liver, but then it was pancreas, then it was gallbladder. We finally found out that it was a bile duct and that it spread to the majority of her GT tract. A stent didn’t provide any relief and as of 2 days ago, she received a side drainage option.
Our oncologist isn’t optimistic. She feels that surgery is out of the question, radiation would put her liver and overall health in worse risk (she is bloated, barely able to talk and on morphine right now) and that once she gets out of the hospital, we can talk about chemotherapy but it would only increase her life in a small increment that may not be worth the side effects.
I’m sure that this story is not uncommon but we are scrambling. We are sending our files to Northwestern in Chicago and Johns Hopkins to get another opinion. Our rational brains are working but we are emotionally lost and while we have rally cry that we will fight this, our information is incomplete and we are lost.
I am writing for any insight…suggestions…help…anything for us to grab onto and turn this around. We have two paths underway: 1. BEATING this and 2. being realistic and focusing on my mom’s happiness. These two points are in direct conflict which is why we are so lost.
Any thoughts or recommendation is a blessing. Thank you.
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