Topic: Desperately seeking support

Hello everyone my name is Michelle and my mom begun this dreadful journey in January 2013 when she was admitted to the hospital via the ER for jaundice . After biopsy's ,MRIs, CT Scans, and blood work she was diagnosed with Cholangiocarcinoma on October 18. I believe the doctor said it was Hilar Cholangiocarcinoma. They also stated that due to the tumor being centrally located it was unresectable. My mother resides in my hometown of Chicago while I'm currently living in TN an hour outside Nashville. However, I have been in Chicago on FMLA after her last stay in the hospital due to a failed stent. She was scheduled to start radioembolization but that was delayed when the stent failed. This was her 3rd stent placement which consisted of 2 plastic stents. When she was admitted her on Nov 17 her bili was 18 . Nov 27 she was released and her bilirubin dropped to 9 . Apparently the stents are working because she has been doing extremely well for the last few weeks. The IR that we are seeing stated her bili need to be at least 1 before she can began ant treatment. December 18th labs showed bili at 2.7 and we will do a repeat on January 9 per the Dr. request. So, we both decided that since treatment probably want start until well after the first week of January we would travel to TN to spend time with family for the holidays. The one thing my mom has always wanted to experience was New Year Eve  in Vegas, therefore, she, her sister, and brother law flew out to Vegas  on Dec 28 and will return on
Jan 2 (smiling )
I thought  she should do whatever brings her joy while she is feeling at her best.
    So, that sort of bring me to the reason I decided to chime in tonight.  I have been following this board since October when I was scouring for as much info about this disease as possible. I would check in almost every night reading random discussions or following some who pulled my heart string. I have notebook after notebook with notes about whatever I thought may or may not been important. Since, I have been caring for my mom nonstop for the last few months and this short break was much needed as I must now prepare for the long haul.. However I'm constantly feeling inclined to search for something everyday most time I don't even know what I'm looking for. It scares me that she is feeling so well. I feel like it's the calm before the storm. I know I have been obsessed with finding ways to either save or prolong my mother's life. I am a 46 year old mother of 2 beautiful children, who are both in college. But, my mom is my everything. I was really looking forward to her and I traveling and growing old together. So, it has been so sickening to think tat she may not be with for much longer.
I would guess one of the most difficult things that any of us has  to deal with  is finding a good support system without feeling like you are burdensome. Unfortunately, most of my family members are either in pure denial or just not available. So, I decided it was time to look for some nontraditional support( smile).
I apologize for the lengthiness of my post, but I tried to provide as much info as possible. Please feel free to weigh in and  share your opinions, it will be greatly appreciated.
The doctors that is caring for my mom has made me very nervous. After  asking each doctor  not one have given me a detailed diagnosis, how many tumors, prognosis. Maybe I'm missing something but everything seem so vague and confusing. If those with experience eyes can determine from the info I've given, which I know is not much; Has her lymph node been effected and if so what does that mean. I'm open to whatever info you can provide, even if its not the greatest news. I just need an idea of what direction this is going.
First of all , she is being treated in Chicago through Advocate Medical Group.
Primary: Dr.Azra Omerovic
GI- Dr. Hareth Raddawi
Radiology Oncologist - Dr.Jason Hyuk Kang
Interventionist Radiologist- Dr.Matthew Howenstein
Medical Oncologist- In the process of researching for one. Mother refuse to do any chemo unless it is ABSOLUTELY necessary.
I don't know how successful it will be because he is not in her network, but I've requested a pre auth for 2nd opinion with Daniel Catenacci at University of Chicago. It's a long shot but we will see.
Side Note: Her left kidney is under developed and situated on right side. The only other health issue is hypertension and She is prescribed 20mg lisinopril. Otherwise my mother was in very good health. She has always been very health conscious. She was not a very active person but her diet was strictly organic and vitamins. She was a smoker and light drinker before getting sick, since then she as quit drinking and smoking.

She is eligible for the Medicare due to a voice disability she suffered in 1998.
Her insurance is Humana Gold Plus(HMO)
She is self employed C.P.A  and own and operates a Tax and Accounting business in Chicago
Marital Status: Single
Health Risk: Previous smoker and social drinker, hypertension.
Side Note: Her left kidney is under developed and situated on right side. The only other health issue is hypertension and She is prescribed 20mg lisinopril. Otherwise my mother was in very good health. She has always been very health conscious. She was not a very active person but her diet was strictly organic and vitamins. She was a smoker and light drinker before getting sick, since then she as quit drinking and smoking.

This is what I know from what I've read:
•    Central intrahepatic billary dilation
•    Local multifocal involvement
•    Lymph Nodes- yes
•    Numerous nonenhancing cystic lesions within the liver
•    Redemostration of abnormal enhancements at the porta hepatis measuring 4x2.8cm
•    Surrounding altered perfusion of the liver on the arterial phase
•    Mass effect on adjacent vasculature
•    Central enancing mass at the (port hepatis)measuring 4x2.8cm
•    Pancreatico billary positive
•    Central tumor ( Right and Left lobe) infiltrated large portions of vessels

Re: Desperately seeking support

HELLO MICHELLE AND WELCOME TO OUR FAMILY BUT SORRY YOU HAD TO FIND US. You sound like you have done all the right things. The most important is to make sure that whomever you see has had quite a bit of experience with CC. I have heard good things about Daniel Catenacci. We are big believers in 2nd and 3rd opinions. If you go to the Search engine at the top and type in Daniel Catenacci some posts should appear about him. I am so glad her Bili is going in the right direction as that is a good sign. I would tell the main INC that you would like him to explain some things to you and ask away. Make notes before hand and use them so you don't forget anything. Hurrah for Mother to go to Las Vegas. I give her a lot of credit. You are in the right direction and please keep us posted as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Desperately seeking support

Thank you Lainy and I too have heard great things about Dr.Catanacci and I am desperately hoping to meet with him. In the meantime we will schedule her with an Oncologist in her network and maybe get a little more light shed on her situation.

4 (edited by PCL1029 Mon, 30 Dec 2013 13:11:57)

Re: Desperately seeking support

Hi,
My guess is your mom has stage III CCA,extra hepatic.
Since lymph node is involved and there are  multiple focal involvement as well as other tumor burden in the hilar areas and the left and right lobe. The best treatment will be systemic chemotherapy like GEMOX or combined with targeted agent. Microwave ablation or RFA will not be the choice due to multiple tumor location.
If your mom do not want chemotherapy or targeted agents that can be taken by mouth for easy of use . Chemoembo or radioembolization  will be the next choice if you mother passed the pre prodcedure test.
Liver resection may be out of the question at this point since lymph node and  both lobes are involved.
If I were you ,I will have 2nd opinions by medical oncologist like Dr. Cantinachi, and IR  2nd opinion at Northwestern univ. IR department. To see they can perform radioembo on your mother.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Desperately seeking support

Hi Michelle,

Can't add much to what you have already gotten from Percy and Lainy, but would also like to welcome you to the "club" none of us wanted or expected to belong to, but I assure you that you will be glad you are here.  We all understand and care and the support you will get here is phenomenal. 

I am glad to hear that at this point your mom is feeling good and is doing what she has always wanted to do.  We never know where life will lead us and we need to enjoy the time we have. 

Take care and keep us up to date on how things are going for your mom.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Desperately seeking support

Dear Michelle,

I can't give medical explanations but Percy did a good job. Even chemo is not a guarantee but is the main tx to slow growth if possible. The feelings of constantly searching for info, answers, support and hope I can really relate to! Sometimes I have to make myself take time away from it literally and mentally. Still, when someone you love gets diagnosed with such a scary and rare cancer, it is ALWAYS on your mind to find a way to help them. Sending best to you and your mom. Have a lovely New Years!
Willow

Willow

Re: Desperately seeking support

Darla- Thank you. I'm already feeling better just because I now have an awesome support system.

PCL1029- First of all thank you so much for taking time out to respond back, I really do appreciate it. However I am a bit confused because I was lead to believe that extrahepatic was if the tumor was on the outside of the liver and her tumor is centrally located within the liver. Also, radioembolization is the treatment they have recommended, but also mentioned that somewhere down the line chemo will come into play. As far as second opinions, I am working on that also. Thank you again :-)

Re: Desperately seeking support

Willow

Thank you you for your supportive words. Yes, I have to forcefully break myself away on a daily basis. Happy New Years to you as well :-)

9 (edited by PCL1029 Mon, 30 Dec 2013 13:26:05)

Re: Desperately seeking support

Hi,
You mentioned it may be hilar CCA,thus the tumor originated  at the Y site; they are the bile ducts just EXIT the liver and the left and right bile ducts join  to form the common bile duct. And hence called extra hepatic CCA.
IF I were you, I will seek Northwestern IR  consult first, then Univ. Of Chicago consult of systemic chemotherapy to follow.
Chemotherapy to follow or not is not absolute ; may increase the quantity of life  but will decrease the quality of life. I personally will not consider this until I absolutely have to.
As most of us know by now, all this chemotherapy,targeted therapy, interventional and oncology radiation treatments are " palliative " in nature; even liver resections, the medical community does not call resection a cure, but "possible cure.
I myself regard the CCA as a chronic disease with emotional  roller coaster rides.


God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Desperately seeking support

PCL1029- I get it now. I guess I need to do some more research.(smiling)

Re: Desperately seeking support

Hi Michelle,
   So very sorry.  I must say that your post almost mirrors my mom's journey. At first, I too spent every chance I got on the internet looking for more information about this cancer.  But, this site is such a good resource. Wonderful people here with great advice and support. 
   Unfortunately, my mother passed away over 7  months ago.  It was a very difficult journey.
My mother's tumor was centrally located, did not qualify for surgery either. Tumor was about the same size as your mother's.  She went thru chemo and radiation, which was hell.  When she was diagnosed, she was completely asymptomatic.  They actually found the cancer by accident.  But probably about one month into the radiation and chemo, she became ill, in pain.  Everyone is different. Some tolerate treatment well. But in my mother's case, she did not, but she completed chemo for about 8 months. Then a month after her treatments ended, she became jaundice and required stents. One thing about plastic stents that my mom experienced was that fat that the clot off easily.  Watch your mom for fever, chills, nausea, vomitting, abd pain. If symptoms occur, please call MD immediately. My mom actually became septic and required a week in the ICU because of the infection.
It's a tough road, but with you by her side, she will be stronger knowing that you are there for her, by her side, every step.
I often felt so helpless, seeing my mom suffer as she did. This is a terrible disease and I hope they can find more effective treatment.
I hope your mom has fun in Vegas, hopefully bring back from $$$.

Anna

Re: Desperately seeking support

Hi Michelle,

I wanted to welcome you to the site as well. You seem to be doing the same thing I did when my daughter, Lauren, was diagnosed with this cancer. I was obsessed with this site and read everything I could get my hands on!! Lauren went through over a year and a half of different chemos and radioembolization with Theraspheres. She took a chance on a radical surgery and sadly ended up passing away June 9th at the young age of 27. I think you are doing everything right. Let your Mom live life to the fullest. You are trying to become well informed, which is great. It makes you feel like you can ask so many more questions of the doctors with confidence. Ask about different treatments. Come here and ask questions, vent, cry, whatever you need to do to feel better. As a caregiver, it is so stressful and difficult. I hope your Mom continues to feel well. We are all here for you.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Desperately seeking support

Hi Michelle, I know, all this can be overwhelming. I also have extrahepatic and have metted to the lymph nodes. I was briefly given hope for surgery, but once it metted that option was taken.
There are many of us who are living with this disease, so there is hope. And so many of us have tried different treatments, so hopefully you can get answers to any and all questions.
Percy has answered better than any of us, I believe. I just wanted to say hi and offer my welcome as well.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Desperately seeking support

pak001 - First of all, thank you Anna for taking time to response and I am so sorry to hear that you lost your mother to this awful disease. My heart goes out to you. I am currently in the process of transferring my employment to Chicago so that I can be closer to my mom. This has been such a surreal experience, especially when she is doing well. I certainly agree that this site is full of extraordinary people that I'm honored to be amongst. One piece of advice I've come across the most is preparing for the "waiting game" with this disease and the rollercoaster of emotions that I will succumb too. Anna if you do not mind me asking what sequence did your mom receive her treatment. Did she receive the radiation first and then chemo. I ask because I’ve read that in most cases its best that you receive chemo after radiation. Thanks again and Happy New Years to you. :-)

Re: Desperately seeking support

Hi Pam, thank you for your warm welcome and it breaks my heart to hear you lost your baby. I have a 21 year old daughter and I can only imagine how difficult this must be for you. I commend you for your strength and allegiance to this board. The fact that you continuously give yourself and knowledge to those in need is amazing. I gather that you are a woman whose heart is filled with so much love and has found a since of peace. I will think of you in my time of weakness and despair. God Bless you and Happy New Years....:-)

Re: Desperately seeking support

Good morning Kris, I am so happy to hear that you are going strong and manage an active role on this board. Women like you and many others on this board make me so proud to be a woman. (-: (no offense guys). Thank you Kris welcoming me into this special club and I will keep you in my thoughts and prayers. God Bless and Happy New Years !!!!

Re: Desperately seeking support

Hi Michelle,
I am sorry, I took so long to respond to you.  First of all, I hope your mom is doing well and she enjoyed her trip!
My mom received radiation and chemotherapy at the same time.  She received total of 28 sessions of radiation and chemotherapy once a week for 3 weeks, with one week off for approx 7 months. She was supposed to go 8 months, but she decided she had enough. She tolerated both treatments fairly well for about 2 or 3 months, but then complications one right after another. My poor mom was hospitalized approx 10 times in 18 months, most of the time because of the side effects of the chemotherapy. She went thru hell. She then finally decided she had enough and requested to stop chemotherapy.  She got about one month off, then repeat PET scan and CT scan. The oncologist was actually surprised that the liver had improved significantly and that the tumor appeared to have shrunk and was not seen on the scans. He wanted to see her again in 3 months for repeat scans.  Then about one month later, I noticed she was jaundiced, called oncologist, they scheduled another CT scan and they found that her bile ducts were occluded.  She then was scheduled for ERCP, resulting in 2 plastic stents.  They could not insert metal stents because the ducts were too narrow.  We could not believe in just one month, how she can go from a clear scan to occluded bile ducts requiring stents.  From then on, she became sicker and more hospitalizations due to infections from the stents.
Michelle, the stents, especially plastic (because they are smaller in diameter) are prone to infections. My mom became septic, ICU for almost a week, then it was down hill from then on. I think she was just so sick of being sick and spending majority of the time in the hospital.
As I stated, before she was diagnosed, she was her normal self, active, no pain. She was completely symptom free. But, in her case, it was after she received the treatments that she became so ill.
So, in hind sight, I think, if we could go back in time, I think my mom would have chosen not to receive treatment, given the difficulty she experienced from the radiation and chemotherapy.  But, when you are told that you have cancer, you initially want every treatment that is available. 

Everyone is different Michelle.  My mom just did not do well with the treatments given to her. Especially after the stents were placed. But every person has different experiences. What we learned from our experience is that quality of life is so much more important than quantity.  We, especially myself was so not ready to give up and did not want to lose my mom and encouraged her to go through the treatments.  But, I saw my mom suffer so much that I wish I can go back in time and knowing what I know now, realize early on that quality of life is more important.  Sometimes I feel so guilty, but I know that will not bring my mom back.  I miss her everyday, but I know that she is with God and is not suffering anymore.

I hope your mother stays well.  Don't be afraid to ask questions. You are your mom's best advocate. But, if you feel like crying, cry. It is a tough journey.
Stay well.

Anna

Anna

Re: Desperately seeking support

Dear Anna, please, please stop going back and blaming yourself. When we first hear the words CC what do any of us know. We do the best we can with a very rare and strange monster. I know that your Mom was grateful to have a Daughter like you at her side on this Journey and as she watches over you now, she would not want you to keep thinking you should have done things differently rather that what you chose with her as it came from a tremendous amount of love. Perhaps stars are not stars at all but rather openings in the sky where our loved ones shine down on us to let us know they are HAPPY!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Desperately seeking support

Thank you Laney for your kind words.

Anna