Topic: Hello I'm new here!

My mom was diagnosed in jan 2013 with cc since then we have exhausted all options. She is now on her second stent and her onc said if her levels are good this week we can start chemo. I am on the fence with doing chemo since the last surgeon we saw said not to do anything because she was so weak and at the time she had shingles . I am struggling taking care of her at home . I work full time and have a 7yr old and a 4yr old my mom has been aggressive lately , wants to go to her apartment . I'm thinking the aggressive behavior is caused by the severe back pain from the tumor and dimentia on top of it. My sisters promised they would help but they seem to have abandoned me . I'm trying to keep my calm with the situation but my moms mood swings have been scaring my little girl (7) she cries when grand mom is upset . I don't know what I'm doing right or wrong , this is so heartbreaking and trying at the same time . Anyone else have a similar experience?

Re: Hello I'm new here!

By the way my name is Terri

Re: Hello I'm new here!

TWolf, welcome to our remarkable family, what a sad ordeal, as if you don't have enough to contend with CC alone! I don't see how your Mom could be alone especially with Dementia. Could you find a private care home for her? My Mom was in a retirement home but then we found a private home with 2 other little ladies with Dementia. The care  she got was extroadinary! And less then 1/2 the price of a Retirement home. Your Mom may also need a MED for agitation. Has the ONC talked about calling in Hospice. You can start with them way out as Mom needs to be made comfortable, she is fighting too many things.
What was her diagnosis and prognosis? Where is her CC?  What age is she? Sorry for all the questions but we need to know a few things in order to better advise.  Is the tumor in the back from CC? Is she on pain Meds. Lastly where is she being treated. What is Chemo going to do for her?
For the children, I would explain that Gran Mom is sick and part of the sickness is that she cannot help getting angry but that she is not angry at them.
As for your Sisters it is time for a "sit down" and be strong. Let them know you cannot handle all this with a job and 2 kids. Ask them point blank what they are going to do to help. Become the BOSS! I am sure you will get more advice here, we love to give advise! Please let us know how things are going as you move along. You have come to the best place to be.

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: Hello I'm new here!

Hi lainy! My mom is 81 yrs young, she has extrahepatic bile duct cancer in late march dr. Yeo at Jefferson hospital , Philadelphia informed us that due to her dimentia,  weakness as well as the tumor being well on the outside of the duct he would not recommend surgery . chemo or radiation would do nothing for her except make her weaker. He advised us to take her home and enjoy the time we so have which he believes is less than a year. Since march she has been on the hospital with plural effusion and then bece jaundice about 3weeks ago . A new metal stent was put in and I was informed that the tumor had grown, that is when the constant back pain started for which she is taking hydrocodone 3x a day. She refused to let hospice in. However if she can't get chemo this week ( Gem) then her onc said she would need to have hospice. The thought of putting her somewhere other than home breaks my heart but I want her to get the best care which I'm afraid I can't provide due to my children and work schedule . I think you are def. right in advising other meds for anxiety something to take the edge off. Lainy you are a Godsend to me and I'm sure many others I've been following your posts ....you are a special person with a huge purpose !

Re: Hello I'm new here!

OKDOKEY lets get started,  Terri. If it was my Mom at 81 and with the problems she has on top of the CC, honestly I would not put her through anymore, but that's me.
Someone really has to call the shots for her now and she will need tough love, you have to reverse the Parent child role. I want to say if you get a private home thru a reptuable agency they are terriffic. Every morning the gal that ran this home dressed all the ladies up, my Mom was like her little doll, she lived to be 94! She loved Kathy, the owner. I would double check by always asking her if Kathy was still her girlfriend and she would look so lovingly at Kathy! THAT WAS MY WAY OF CHECKING IT ALL OUT.  When we had to put Mom from independent living to assisted at the Retirement place she was NOT taken care of. We were paying 4400.00 a month. The private home was 2,000 a month with 3 homemade meals a day and snacks. AND the Retirement home was rated the best in AZ. Just say'in from exprience. The private home will also order in Hospice when it is time. I just want to say that when Mom's time came, Kathy slept in her room for 3 NTS with her and fed her chipped ice. If extra expense is involved I hope your Sisters help.  If Mom does not have the Dementia and pain under control many private places will not take her.  So, I would make a decision either/or. Comfort is our bottom line and she definately needs to get comfortable. She is in no position to call the shots.  Eiither Hospice or a Home. I know this is really hard, my goodness how do we boss our parents? But in the long run you will be doing her a favor. I would also talk to her ONC and tell him that she needs something for agitation and something more for pain. When I had Hospice come for my Teddy I had ordered a Hospital bed and set him up in the airy and bright living room. That is also where the big TV was! He was so happy there as were visitors and etc. I also had ordered a walker and a wheelchair. Perfect! So, I would start with the MEDS. Best wishes and be more kind to yourself!

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: Hello I'm new here!

Terri -
I don't know how to help at all.  I just want you to know that I will pray for you.  My husband was recently diagnosed and it is so hard.  I know that your world has been turned up side down.  This is a great place to vent.  I am very new to this as my 38 yr old husband was just diagnosed about a month ago, but I know what it is like to be a care taker and then have to deal with kids.  It is an exhausting task and my husband is not having the emotional issues that your poor mom is having.  That breaks my heart for her and for you.  The others on this site have much better advice than I do, but I wanted you to know that I care. 
Carrie from Atlanta

Re: Hello I'm new here!

Hi Terri
   Very sorry what you and your family is going through.... at times I wanted to scream because I was at my wits end seeing my mom suffering so much.  She endured radiation, chemotherapy, one external stent, 2 internal stents, infections, IV antibiotics, sepsis, numerous ER visits, hospitalizations.  To be honest I don't know how she endured all of this for 1 and 1/2 years, because I certainly could not have.   My mom left us 12 days ago, although I know she is no longer suffering, we miss her terribly. 
    It is ok to feel frustrated, overwhelmed, angry. This cancer robs us of our loved ones. If you feel like talking, feel free to contact me.

Anna

Anna

Re: Hello I'm new here!

I am new to the site. July will be my fourth year of becoming diagnosed with intrahepatic cholagiocarcinoma.I had a liver resection 3 years ago and a y90 procedure last year. My oncologist, Dr. Howard Bruckner suggested I log on to let other people know about my treatment. I get chemo every two weeks and the existing tumors have been unchanged for the last 2 scans.Ialso get scans every three months at Mt.Sinai .My surgeon Dr. Myron Schwartz guided me to Dr. Bruckner and I will forever be grateful to him  for the recommendation. I remain upbeat and would gladly answer any questions.

Re: Hello I'm new here!

Dear Dylan, welcome to our extraordinary family but sorry you had to find us. My goodness you have really run the gamut and are a Super Hero. BTW both your Doctors have had great reviews on this site. Your attitude is wonderful and attitude is everything. Congratulations on being a 4 year survivor and I know down the road you will be asked lots of questions. A huge thank you to Dr. Bruckner for suggesting that you join our family. That is the biggest compliment we can get is when a Dr. suggests to a CC patient to long on to our site. WOW! I am smiling ear to ear. Please do not be a stranger now, keep us in your loop and wishing you continued success and the very best!

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: Hello I'm new here!

Dylan...a warm welcome from me to you also.  Congratulations on your success with this  cancer.  Dylan, would you be so kind and share with us Dr. Bruckner's treatment protocol?  Dr. Bruckner and I spoke at ASCO and I am thrilled to know that he asked you to join our site. Keep it up, dear Dylan, you are doing fantastic.
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

Re: Hello I'm new here!

Hi, Dylan,
I am also a patient of this disease for four years now.
May I ask how old you are, I am  64 .
And if I may what is the date you had been treated by y90. One lobe or all lobes of the liver? One treatment  or more than one?
And if I may, is it because of the ineffective y90 treatment that the cancer returned or the new tumor just pop up lately that you need to continue chemotherapy treatment? Dr. Buckner likes to use multiple (usually 4-5 different chemotherapy agent in small doses in the past.) he is unconventional oncologist and thinks outside the treatment when it comes to chemotherapy.
I appreciate you comment and thanks in advance.
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: Hello I'm new here!

Hi Dylan.....I'm also a patient of Dr Bruckner and I have had 2 liver resections with Dr Schwartz at Mt Sinai for intrahepatic CC...unfortunately I to have had a recurrence in my peritoneum and am currently receiving chemo with Dr. Bruckner and Dr. Hirschfeld in the Bronx. This is my second round of chemo with Dr. Bruckner I go for my first CT scan tomorrow and am extremely anxious about it!!! I also feel fortunate that I found Dr. Schwartz and that he directed me to Dr. Bruckner...I think everyone there is terrific! @Percy I'm currently receiving Gemzar,Irontecan,Leucovorin,5-FU and Cistplatin...originally I was receiving Oxaliplatin but unfortunately reacted to it twice so was switched to Cistplatin.....Dylan I hope we get a chance to meet! I will be going the 1st and 2nd of July...
Nancy

13 (edited by H Tze Wed, 26 Jun 2013 12:05:22)

Re: Hello I'm new here!

Hi Terri and Dylan, welcome to the group.. I'm new here as well.. sorry we have to meet here.. I don't have much information can share since I'm still learning as well... but I can share my personal feeling as a patient's husband.

Somehow I think that's our destiny that my wife got this type of cancer.. (that's totally change our point of view in life and life style) and we cannot do anything to change that.. so we decided to do whatever the doctor said; surgery, chemo, RT... try our best to cure, to lower the chance of recurrence, and to make her life last as long as she could.... 

And on the other hand, we live everyday as the last day. tell her jokes.. make her meals (I never walk into the kitchen be4 she got this cancer)... take her for walks.. comfort her in anyway...

I still think that we are luckier than those who got in accident and never get the chance to did say or do what they want to their love ones be4 they gone... we do have the time and chance! Although it might be tough on this journey...

BTW whats Y90??

Re: Hello I'm new here!

AW, H TZE, you remind me so much of my Teddy! When he got his CC we decided at that point that what ever time we had (turned out to be 5 1/2 years) we would find out what was wrong and try to fix it. He would say, now that we know the problem, let's get it fixed. But the best thing he ever came up with, and you have my permission (ha ha)to use it, that time frame "He called our Honeymoon!" Every time we had  a new Nurse with Home Hospice he would say, "We are on our Honeymoon". You sound like such a caring loving husband as well so your wife is very lucky. We dealt with everything with so much humor even the day I had to take him from Home Hospice to a Hospice Facility we laughed and that was the hardest and worst day of my life. Let the love and humor shine through....you will always be glad that you did. I keep saying CC is only for the strong be it a patient or a Caregiver.

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: Hello I'm new here!

Hi Hugh,

Y-90, some links for you -

http://www.cholangiocarcinoma.org/punbb … hp?id=3259

http://www.sciencedaily.com/releases/20 … 092409.htm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2702899/

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hello I'm new here!

Hi,
Nancy,
Sorry, I missed your comment a few messages earlier on Dr. Bruckner, he thinks outside the box that is why he is good at what he does well.
Unfortunately , as you and I know well enough that even surgical resection still is not the cure as what the literature said but only is a  POSSIBLE cure. For ICCA .I think chemotherapy may not be only the solution for us in the long run. It is very harsh on the entire body and ultimately will affect the functions of other organs.
May I ask how long was the treatment between the last resection and the recurrence of the mets to the peritoneum ,? How many cycles or do you have to continue the treatment protocol until disease progress or intolerable side effects occur.? Did Dr. Buckner add any VGFR inhibitors such as Avastin to the regimen for the mets to the peritoneum?
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.