• From: manilla, IA
  • Registered: Fri, 18 Jan 2013
  • Posts: 5

Topic: Newby

Hello All!
My name is Kami and I have been following this site for a few months without becoming a member and posting things. I was very unsure of what I would write, how I'd ask questions, but after following for awhile I see this is a VERY welcoming "community". I'll start with saying I'm 25 years old and found out Oct 18th that my 52 year old mother was diagnosed with CC. Her and my dad had been out in vegas and on their last night my mom was in so much pain she stayed in. The next day she called and made an appointment for when she got back. Of course all of us thought too much fun in vegas...must be gallbladder. She went to her primary physician where they did and ultrasound and saw "some spots" on her liver. THey were unsure or not if the spots were difused so they ordered her to have a CT Scan...well that scan lead to a specialts in Omaha where and MRI and bioposy of the lesions took place. After this, is of course when we received the news of the "c-word", devasted does not even begin to express the emotions that I felt. My mom is my best friend, person I go to, my # 1..they surely had to be wrong/had the test results mixed up because she looks/feels to good to be sick! From here we were unsure where life was going to take us all... Mom got her first opinion at Nebraska Cancer center in Omaha and second at Mayo in Rochester. What we found out in Rochester was the same news we heard in Omaha. Her main tumor primarily taking up the left lobe was very large (can't remember exact measurements right now) and she had some lesions that were 2-3 cm in her right lobe. There was no possilbe way for surgery and no way of a liver transplant. We had went to mayo with the HOPE that they would say they could remove her mass/have a liver transplant, but they said what Omaha was doing, and had planned to do they 100 % agreed with and informed us they have referred others for 2nd opinions from their hospital down to Omaha. With that reassurance we have been going to Omaha ever since. Mom has 3 cycles of chemo down (began the start of her 4th today). Her "cock tail" has been Gem/cys. She went in for scans this past Monday and came back today for her results/what regimine she is going to stay on. we were EXTATIC to find out her tumors were shrinking! Not in GREAT amounts but WERE shrinking. Hearing a little bit of good news after being in this crazy bad dream for the last few months was enough to bring tears of joy. I know that this is only the beginning and there will be many more osbtacles for us to overcome but as of right now we're enjoying how good she feels/looks and trying to stay positive. Anyways, this is my story thus far and I know I have A LOT of questions already, which by reading this site i Know you all will be more than happy to answer/help any way you can, but I thought i would introduce myself and story before the questions went flying!
Thanks for reading smile
Kami

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: Newby

Hi Kami,

It is so nice to meet you, but I am really sorry to hear about your Mom. Your story sounds so similar to ours, it is scary. But the flip flop version. My daughter, was diagnosed at 25 and I was 53. Crazy, huh? You seem to be doing a great job learning about this cancer and the treatments. I would be happy to help with anything you have questions about. Of course, I am just a mom doing everything to help my daughter. I am not a doctor. I can only go by experience and all I have read. Don't ever give up hope.

Love and big, big hugs,
-Pam

Hoping for a miracle for my daughter, Lauren.

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.

Pamela's Website

  • Registered: Mon, 27 Jun 2011
  • Posts: 435

Re: Newby

Hi Kami,

Welcome to the site and sorry you had to find us. It sounds like your mom has a good treatment plan is place. Glad to hear her tumors are shrinking. 
Keep us posted on how she does!

Take care!

Susie

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,738

Re: Newby

Hi,
Your next most important question  may be " Is the tumor shrunk enough to have the chance of surgery, the ONLY possible cure for this disease." Unless even after the tumor shrinkage,because of the location of the tumor or have mets to other parts of the body,then it is another story.
I am a patient of ICCA , 2 lesions in the right lobe and an 6x8 tumor in the left lobe, similar to what your mom ' s situation. And I had the left lobe taken out and RFA ablation to get rid of the  2 lesions on the right lobe. Your message provided little info for me to understand your mom ' case in detail,  ( i.e.: the size and the location of the tumor and lesions) .so I will just stop here.
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.
  • Registered: Fri, 12 May 2006
  • Posts: 8,173

Re: Newby

Kami...a warm welcome to our special group.  Now, wasn't it easy to join in?
Just wanted to congratulate your Mom on the shrinkage so far and wishing for continued success with the treatment. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: manilla, IA
  • Registered: Fri, 18 Jan 2013
  • Posts: 5

Re: Newby

Hello Again!
Sorry it has taken me so long to respond back to everyone. Thank you to everyone who has written on my wall and read my mom's story. As you all know things can change everyday...not anything huge but mom was unable to have chemo last week since her magnesium was low. We're told this is very common and cisplat just knocks your magnesium out. She had to take pills and go in to get IV fluids and so far her levels seem to be back up! The dr said there is nothing she can really do to help this...anyone else heard any different? I guess fluids and pills aren't huge but just adds more to what she already takes/has to do!

Pamela--I have been following your blog and have caught all the way up with it! It's absolutely crazy how our stories are so very similar but roles reversed! I'm absolutely thrilled to see all of lauren's progress and how well her body has been handling everything. It truly gives me a lot of hope knowing the "impossible" we were given at the beginning CAN happen!!

PCL1029--Thank you for your information..I will have to get my mom's reports out and look at exact measurements and where the tumors are  located. The doctors have told us they don't think that the chemo can shrink it enough to have surgery, but said they would reevalute with us as we go. They were most reluctant to do surgery because she had cancer in both lobes already and said even if they did surgery on the left half the right half already had growths. Again i Know this is not much information and from your story it seems it IS possible to have surgery if there are lesions in the right lobe...I will be getting back with you shortly after I go look at mom's reports.

  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,218

Re: Newby

Dear Kami, welcome to our remarkable family but sorry you had to find us. You know by now that you have come to the best place there is for support and help. You have done and are doing all the right things. This CC seems to have a mind of its own but we are thrilled when we hear shrinkage or stable! I just got off 10 days of Magnisium IV's for Colitis and learned that Magnesium plays a very important part in our systems. There are always so many glitches it seems and that is why we call this a roller coaster ride that no one wants a ticket for! I so understand the extras and it becomes a great feeling when you can knock them off one by one. Sending your Mom the very best and please keep us updated 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.
  • Registered: Fri, 12 May 2006
  • Posts: 8,173

Re: Newby

Kami...calcium and magnesium can be given per IV before chemo treatment.  Something you might want to discuss with your Mom's oncologist.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER