Mom’s diagnosis
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Hi all,
Thanks again for all your feedback and support!
Cathy – I will give you a call to talk about your experience!Mom has been in the hospital now for a few days because of infections from the stents but it’s getting better. I hope we will go home today and can begin treatment soon. She is weak but getting stronger!
The only available appointment at Mayo I was given is at the end of July. The doctor here (at Northwestern) said she might start chemo soon (even when mom is in the hospital). I asked Mayo about what if we do chemo (because of time) and they said that we need to do a min of 2 rounds (I have no idea what a round is???)With regards to surgery I also spoke to some doctors in Israel (we sent some papers) and they also said that they can’t do surgery…I also really hope that chemo (and or radiation afterwards) can help shrink this thing so it can be removed – and that my mom can handle chemo well.
Thanks again for your support and all the feedback.
Hugs,
JennyJenny,
I went to Mayo for a consult appt and had surgery the next day. I got tired of waiting for our local medial wheels to grind as slowly as they do, so I called Mayo myself. I had written down everything I already knew about my condition (not diagnosed yet as cholangiocarcinoma), all the test results, and arranged to have samples of the biopsy sent to them . I told them I could get my local doctors to send copies of the CTs I had done here. The lady took all this info and said someone would be back with me in 2-3 days to discuss an appointment after the info was reviewed by Mayo oncologists. They did indeed call me back in two days and set up an appt within a week and a half. I hand carried my CT copies to my appointment (instead of mailing them) and a copy of all of my blood work results and other testing.
Actually, I got most all of this done, and then finally the local doctors told me that it appeared that I probably could have surgery to cut out aa section of my liver where the tumor was, but they did not recommend I do it locally, since it was a big surgery and we had no one here locally who was really qualified. They mentioned that I should either go to the University of Iowa (just 30 miles away) or to Mayo. I then told them that I’d already contacted Mayo and had an appointment set up already to boot. Fortunately, they didn’t feel like I’d stepped on their toes…and I had an appointment probably a week earlier than I would have if I’d waited.
Anyway, I expect that Mayo will get back to you pretty quickly, as they did with me.
Dear Jenny –
Welcome to the best little family that no one really wants to be a part of. Sorry that you have to join us. You have however found a great resource to help you and your family.
So glad that is sounds like you are being very proactive. It also sounds like you have a good plan going.
It does seem that Gemcitabine and Cisplatin are the drugs of first line. The platin drugs in general are the second drug. My husband did Oxaliplatin and I know others have done carboplatin. One thing to keep in mind is that while surgery may not be an option it very will could be later down the road. There are those on here who have been told that and ultimately been able to have surgery. Also there a several studies out there that you may look into.http://cholangiocarcinoma.org/professionals/research/clinical-trials/
Good luck and keep us posted.
KrisVHi Jenny,
Welcome to the site. Sorry that you had to find us all here and sorry also to hear about your mum and what she is going through right now. But glad that you joined in with us all as you are in the best place for support and help from everyone here. And real glad too to hear you say that you have been doing your reading here on the site since your mums diagnosis and are looking for further opinions about everything, that is the best plan.
I know you said that your mums diagnosis was inoperable but other facilities may be able to offer surgery of some type and that is why it is vital to seek those opinions from facilities and doctors etc that are very experienced in dealing with this cancer. I wish your mum every success in seeking these opinions and please keep us updated on how this goes. Please know as well that we are here for you and we care.
My best wishes to you and your mum,
Gavin
Jenny, Sorry to meet under these conditions. I live in southern IL and am excited to tell you I am 6 years cancer free from this awful disease. There is HOPE!
I worry when they say your mom is inoperable, that is a reason to get a second opinion. My miracle worker was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman is very phone friendly and knows time is not our friend, he will do a phone consult quickly to see if he is able to change things. The Mayo Clinic and MDAnderson are probably the most mentioned on this site for cutting edge CC care, but there is a little more time involved in getting an appointment.
I keep my story posted at http://www.catherinedunnagan.com
Please contact me if I you would like to talk or if can share any info. (618-567-3247)
Lots of prayers for your mom and her family for HOPE
CathyDear Kathy and Lainy,
Thank you so much for your messages and support!
We are waiting for Northwestern oncologists to come in today and tell us what they think. I will also call Mayo later today to see how soon we would be able to get an appointment (I talked to them on Thursday and gave the whole story but was told I will hear back from them).
I will keep you posted!
Best wishes,
JennySorry I didn’t answer your questions. I started with chemo first (Cisplatin/Gemzar) because my tumor was so big, and I was so sick they thought I wouldn’t survive surgery. I actually got clinically better on chemo, and we forged forward with surgery. Radiation has been mentioned in passing, but it has never been at the forefront of our discussions.
Good luck!
Kathy
Dear Jenny, welcome to the best place to be for CC support but sorry you had to find us. Yes, Gem/Cis seems to be the first line of treatment and many patients have good results with it in the form of shrinkage. You are already doing all the right things especially by getting a 2nd opinion. I would give Mayo a call and ask them if Mom should proceed with treatment before her visit. Not sure but I do know that we have many members that have been in similar situations and answers should start coming in for you. Wishing you and your Mom the very best and once a treatment plan begins know that your fright will turn to fight. Please keep us updated as we truly care.
The link below may be of some help to you”http://cholangiocarcinoma.org/newly-dx/
Hi Jenny –
I am so sorry to hear about your mom. I see you are waiting to be seen at Northwestern in Chicago. That’s where I have gotten my care for cholangiocarcinoma. I was diagnosed in January, had surgery in March, and am about to start my post-op chemo (had clean margins on the tumor but three positive nodes).
Anyway, I have a couple of amazing doctors at Northwestern – Dr. Mary Mulcahy is my oncologist and Dr. Talia Baker was my surgeon. They have worked miracles with me.
Good luck!
Kathy
Good morning
My name is Jenny and I am writing this message for my mommy – she is 57 and was diagnosed with stage 4 cholangiocarcinoma only this past Wednesday June 10th. I was there at the appointment. I live and work in the Netherlands now but arrived a few days before so I can be with my family in the Chicago suburbs as everything happened so quickly! We are still processing the information while at the same looking for the best treatment for her.
She got to the ER on May 30th with pains in her gallbladder. She was also jaundiced. She knew she had stones and was actually planning on seeing the surgeon the following week to get the gallbladder removed. For the last years or so my mom always had her blood work done and also liver checked, and on April 20th she had a liver ultrasound which showed everything normal! She got a cold on April 22nd and for the following week had a fever which lasted a week or so. After it gone down she was very active (looking after her 2 year old grandson!) and it was around May 14 when I was visiting for week, she went to see a doctor for what she thought was an infection – she got some antibiotics, one didn’t work and it was on the second one from May 18th until she got to the hospital on May 30th is when she lost 18 pounds in weight…In the hospital she had stents put in to drain the bile, they said it is cancer and it’s inoperable. The treatment plan we were offered was palliative Cisplatin/Gemzar.
I have been doing research since I heard the potential diagnosis and came across this site – thank you so much! I read so much and already have been looking for second / third opinion. I am waiting for an appointment in Mayo clinic and now we are in Northwestern also waiting to see an oncologist there.
Is chemo the usual treatment to start? Should we wait with it until we go to Mayo? I was also reading about other treatments with less side effects such as RF ablation, other types of radiation?
But I am worried because of timing! We got back to the ER this past Saturday because of a potential infection. We went to a different hospital to find different answers but are not getting anything..Thank you for your support!
Jenny
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