Daughter not ready to lose her mother
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Lisa,
I am so sorry that you too are going through this. It is a posotive sign they were able to operate at all. My mom was not able to have that due to size and location of her tumor. Spend lots of time with her and pray and I will pray for her as well. If you need anything just ask!Christine
Before the day gets crazy at my work, and I won’t have time to comment, I wanted to say WOW to Cathy, what an amazing story, thank you so much for sharing and providing HOPE. I believe that my mother is in good hands with her doctor, Robin D. Kim. I would be interested to know if anyone has heard of him. What is the next step when do they start chemo? What can I do to help my mother and my dad through this long journey? Why does she have to be in the hospital for two weeks?
Hi,
Shortness of breath may be due to the tumor is too big and press again the diaphragm and if she feels some dull pain, just ask her to lie down and rest instead of sitting up;
You should also know that if a patient is on chemo and wants to do radioembolization;a waiting period of 2-4 weeks is normally required to let the previous chemotherapy be out of the patient’s system first and therefore will not make the liver more radiosensitized to the radioembo treatment later.
Good luck and pray for guidance.
God bless.Dear All,
Thank you very much for the warm welcome. I feel blessed to be part of this truly amazing family.
@PCL – My Mom’s medical (and surgical) oncologist did mention Yttrium-90. It’s just that he wanted no more delays, thus, systemic chemotherapy first while waiting for the “result” of the R submandibular lump. He says it’s ok to have the Y-90 in between if the result is favorable. I am hoping that she’ll be able to receive this treatment.
God Bless!
Dear Lorraine — I live in the Northwest (Redmond). You are in good hands with SCCA. One of the best comprehensive cancer centers around. I’m sorry you are having to go through this ordeal.
DianeHi, Lorraine,
Most likely, the submandibular gland problem may be just an infection or inflammation ,even the SUVmax is 4 or even higher like 6 or 7,highly unlikely it will be cancer that metastased from the CCA.
The most common place for CCA to spread to is the lung,the bone and the omentum .
Radioembolization and chemoembolization are Other choices besides the systemic chemotherapy and in your situation they may be of value. Please read about messages that in our discussion forum under Radiation etc.
Portal vein involvement is not a contraindication for radioembolization .Those two radiation treatments are not for cure but for palliative purpose . However ,it will be less side effects on the patient and can provide(depends on the tumor burden and the vascularity of the tumor and patient’s current health status) 1-2years disease progress free time for the patient . The successful rate of radioembolization is about 46%.
2nd opinion by an interventional radiologist is recommend. And if you said you have been quietly reading our messages on this web site for a month,you will know that I am only a patient like your mother ant I am not a doctor. Another consultation with a hepatologist for treatment recommendation is also a good idea.
God bless.Lisa/Lorraine- “Welcome and sorry you had to find us”, you will find that is
a very popular post on this site. I am a CC survivor, I will be cancer free 3 years on May 24,2012.! There are CC survivors, there is HOPE, I am sure you will be heaing from more.
I am alive because of God, 2 strangers, and Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I having an amazing story to share and you can read it at thetelegraph.com under christmas miracle, it will give you HOPE.
My CC was inoperable and involved my portal vein.
The best advice I can give you is after prayers and more prayers, is to make sure you are in the care of doctors who are knowledgable (they are limited)about CC and know all the options, clinical trials… and they believe transplant is an option before ruling it out. You will hear from our family about some GREAT doctors.
Just keep psoting because the one thing this site is great for besides so much knowledge is amazing COMFORT!
There is HOPE and lots of prayers-CathyDear Lorraine, Welcome to our amazing family but sorry you had to find us. I am truly sorry to read about your Mom but it is a good thing that she is able to start her Chemo, soon. Please try not to be too anxious about chemo effects as patients are closely monitored and some never get the ‘dreaded’ effects. Actually the gem/cis seems to be the popular ‘cocktail’ of choice around here. Your crying and nervousness is totally normal around our parts here. Everything will calm down though and fright will turn to fight. I am glad you have been reading up on CC and our Board as knowledge is our most powerful tool in fighting CC. Wishing your Mom all the luck in the world on her Chemo and please let us know how she does, we all truly care, and for you please try to be strong, attitude means everything. Most importantly all kinds of prayers are coming your way.
Hi all. I have been quietly reading on this Discussion Board/forum for about a month now and I’ve found it to be very insightful. My name is Lorraine and my dear Mom, Linda (67 y/o) was diagnosed, in January, with intra-hepatic cholangiocarcinoma. Her oncologist said that it is the size of a “baseball” and unfortunately, inoperable, because of portal vein involvement. On top of this, she has a big lump at the right side of her submandibular. PET scan revealed an SUV = 4.4 (maybe, cancer? accdg. to the doctors. If it is, it is highly unlikely to be metastasis from CC). Thank goodness, biopsy revealed non-cancer but don’t know what it is. We are now referred to a Head and Neck doctor, who we’re hoping to see next week. She will be starting her chemotherapy with Cisplatin and Gemcitabine on March 12 (Day 1, 7 and 21 protocol) at Seattle Care Cancer Alliance. My Mom feels fine with occasional shortness of breath with some exertion. I have also noticed that her abdomen has gotten a little rounder. I am hoping that with her pre-chemo CT scan, it will show no growth and it is just my imagination. I have been very anxious about her upcoming chemo. I have heard and read horror stories about this and I continue to pray that my Mom will not experience any side effects.
I try to be strong for my Mom and my family. The truth of the matter is, I have been crying every night because I am very scared and it is only in prayers that I can find comfort for now.
Thank you for listening.Thank you so much for your prayers, I too will include your mother in my prayers.
My mother did not have the whipple procedure. However, I wonder if this occured around the time she had her gallbladder removed which was over a year ago. She is in the ICU at University of Utah Hospital. The nurses said that she is doing so well that she may be moved out of ICU tomorrow, they said that in order for the breathing tube to be removed she has to breath a 900 and she reached 1900 this morning, she also passed exceptionally well on other tests, the nurses said they have never seen anyone reach that high, they are now calling her Lance Armstrong. My dad made a comment on facebook that if anyone thought my mother was fragile and delicate, they have no idea the strength she is capable of. She is expected to be at the hospital for two weeks. Thank you for your comments and support.
Hi, Lisa,
Your mom is very lucky that can have surgery to remove the tumor and the lymph nodes ; this is the best news that your mom can have if she was diagnosed with this disease.
Even with positive margin like you had indicated in your message, with the chemotherapy and/or radiation treatment; and with a positive attitude to fight this cancer; your mom will do fine in this long and winding journey of treatment.
I am a CCA patient for 34 months now,I regard my CCA as a CHRONIC DISEASE rather than as cancer; In this way,you,as a caregiver and the patient will have a more positive attitude and a better and informed mind set to prepare what this long journey will bring.
I find prayer is very helpful especially when choices are need to be made;especially when you feel there is no place or no body to turn to; and most importantly,prayer helps a person to quiet the inner-self and provide calmness and reduce the stress to the bodyand in that way it will help you and your mother. Keep praying.
God bless.Dearest Lisa, welcome to our extraordinary family but sorry you had to find us. I am so very sorry to hear about your Mother but you have arrived at the right place, you are NOT alone. It sounds as if you are doing all the right things and your Mother certainly has a wonderful support group around her. The best thing you can do now is to show strength as you don’t want your Mother worrying about all of you especially when she is showing such a remarkable attitude. Please do not listen to statistics as we were not born with expiration dates stamped on our feet. We always try to stay realistically optimistic. The Anti Cancer Book is one of the best, unfortunately we really just don’t know what causes CC. About the only thing we know for sure is we know not much and that is what we are working on.
When I felt over whelmed or sad or strressed, I would get in the car, put on my Mama Mia CD and sing out until I thought the next city would hear me. Then I would go back home and was fine. Did your Mother have a Whipple? You mentioned Nurses loving her, was that in the hospital or do you now have Nurses at home. I jsut know you are going to get more replies , so hang in, be strong and we are all here for you. By the way, you don’t have to be religious to pray! God hears us all. You never know how strong you are until “strong” is the only choice you have!Hi Lisa,
Just saw your post right now, I feel like you are sharing my story. I will be praying for your mom. I’m pretty new to this so I can’t help you here much but I’ve been reading a lot of posts and people seem to be very caring and informed.
Wishing you and your mom the very best.
Hello fellow members, my name is Lisa Jennings and my mother Connie has been affected by this horrible monster. I am not religious, however, I have been praying since January when we found out that my mother may have cholangiocarcinoma. Two weeks ago, the results confirmed that it was true and she had her surgery yesterday. It has been an emotional roller coaster for our family, my mother is only 64 and she is a saint, always worrying and doing for others. We have never had anything tragic happen in our family. Our father adores our mother and treats her like a queen. I have never seen him so upset, and of course, she is putting on a good face for all of us. Obviously, this has turned our world upside down as you all know so very well. It progressed farther than what we were told in the beginning, the main cancer was in the bile duct, however, the cancer branched out in her liver. The surgeon resected (?) her bile duct, liver (over 50%), and two lymph nodes. He couldn’t get all of the cancer, therefore she will need chemo. The surgeon said they will know in a week what stage the cancer is at. My siblings (6 of us) and I had a meeting on how we can be supportive to our parents as well as to each other. I handed out info about the cancer and about this foundation. So worried for my mother and I am now reading a book about anticancer and freaking out about the foods we eat and the environment around us. I am not a cryer and in the past I have been really good with hiding emotion when it’s negative. Since the news, I have probably cried more with this upsetting event more than I have with anything else. I visited my mother today and she is talking and being her sweet self, she appears to being doing well. The nurses just love her and I am grateful for their care. I just want this to end so we can all go back to normalcy. Not sure where I am going with this but thought I would start with introducing myself. Lisa in Salt Lake City, Utah
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