April 29, 2017 at 1:57 am #89951chinesechickParticipant
My sincere condolences to you and your family on the passing of your dear mom. I can understand the pain you and your family is going thru. I lost my mom to this terrible disease on Nov. 16 and our lives has not been the same since.
Please do take care of yourself and your family.
Aloha, NancyApril 29, 2017 at 1:31 am #89950middlesister1Moderator
My heart goes out to you. Although not enough, I’m glad your Dad was by her side. We lost my father (lung cancer) in Feb, and I know you will be there to support your father, but also take care of yourself. If you ever need someone to talk to, please email me.
Love and hugs,
CatherineApril 29, 2017 at 12:26 am #89949
I am so sorry to learn that your mum has passed away. It does sound like she passed peacefully and with your dad at her side. I hope you can find some comfort knowing that. For her the suffering is over. In time your pain will slowly lessen. We never forget, but it does get better with time and you will begin to heal and be able to take comfort in all the fond memories you have of your dear mum. Thinking of you and your dad at this sad & trying time.
DarlaApril 28, 2017 at 11:35 pm #89948lainyParticipant
Dearest Tiah, I am so very sorry about your Mum but please know that she will always be around you just in a different way. You are a wonderful daughter and I am sure she is very, very proud of you and the way your love also helped you to walk this journey with her.
I’M STILL HERE
I’m at your side each night and day,
In your heart is where I’ll stay.
You can feel, see or hear, I am not gone, I’m always near.
I’m the colorful leaves when fall comes round,
The pure white snow that blankets the ground.
I’m the first bright blossom you’ll see in Spring.
The first warm raindrop that April will bring.
I’m the first ray of light when the sun starts to shine,
And you’ll see that the face in the moon is mine.
I’ll whisper your name through the leaves on the trees,
And you’ll feel my presence in the soft summer breeze.
I’m the salty tears that flow when you weep,
And the beautiful dreams that come while you sleep.
I’m the smile you see on a baby’s face.
Just look for me, I’m every place!April 28, 2017 at 11:32 pm #89947marionsModerator
Dearest Tiah …..nothing I can say will make your heart feel better, but know that your Mom touched our lives in many ways. She will not be forgotten on this site and in our hearts.
Someone once said: “Grief is the price we pay for love.” So true.
Hugs and love
MarionApril 28, 2017 at 11:22 pm #89946
Thank you everyone for your well wishes. Mum passed away at home on 27th on April. She had spent one last night at home with dad sleeping by her side. She was relatively pain free however became extremely weak. It was heartbreaking to watch. She will leave the biggest hole in our lives. We really thought we had more time, but her liver just shut down. She was never ready to go.
Her wish for her funeral is to have people donate to the cholangiocarcinoma foundation and we will honour this.April 28, 2017 at 10:17 am #89945middlesister1Moderator
My thoughts are with you and your family. And, although it is hard, try not to second guess what you could have or should have done better. You were a wonderful advocate for her- this is a lousy disease and even with perfect treatment plan, too many times the CC wins.
CatherineApril 27, 2017 at 5:40 pm #89944gavinModerator
Real sorry to hear this news about your mum Tiah and having been through this with my dad I so know what you are going through right now. Thinking of you and your mum right now.
GavinApril 27, 2017 at 8:04 am #89943lainyParticipant
Dear Tiah, I am so very sorry to read about your Mum. She is resting comfortably and remember that even though she is sleeping she will feel your touch and soft whisper’s of I love you. I personally found that by releasing our loved ones to go to their peace it also helps us to better accept that journey.April 25, 2017 at 10:29 pm #89942marionsModerator
Tiah….I too am sorry to hear the latest news. Agree with Darla, your dear Mom is not suffering nor in pain. Although she is sleeping more, you still have her, dear Tiah. You have been given the most precious of times to cherish and hold onto forever.
My heart is with you,
Hugs and love,
MarionApril 24, 2017 at 11:19 pm #89941
So sorry to hear this. On the positive side, I’m glad that she is comfortable, not in a lot of pain and is able to eat without getting nauseous. Hope things go well with the gastroenterologist tomorrow. My thoughts will be with you and your mum.
DarlaApril 24, 2017 at 1:35 pm #89940
It appears we are reaching the end. After one round of FOLFOX mum was doing well. She had an ascites drain about a week later and we went camping away for Easter. While there mum was very nauseous and was vomiting. She started getting confused and became delirious. We left and rushed her to hospital. She had hepatic encephalopathy, she was hyponatraemic and had elevated bilirubin (80). They suspected all was triggered by spontaneous bacterial peritonitis (SBP). Unfortunately they’ve treated the infection and although her confusion and delirium disappeared with lactulose, she has entered into liver failure and they are suspecting hepatorenal syndrome. It’s all happened so quickly. We had the Caris testing ready to go but it’s too late. Although we are seeing a gastroenterologist tomorrow at the hospital (she’s still admitted) we just want to get her home. Palliative care are involved however she is quite comfortable and has little pain or nausea and she is still eating, but she is sleeping more each day.
Thank you so much for your well wishes and support through our journey. We never thought mum would decline this quickly – 2 weeks ago she was fine. It’s heartbreaking. And I’m angered because I feel more could have been done earlier for her, but a gutless surgeon decided not to operate.March 24, 2017 at 4:37 pm #89939positivityParticipant
Have you considered a break from chemo to have the body recover? Give your mom nutritious foods and fresh green juice daily, perhaps a shot of wheatgrass. Also, citrus fruits to boost her immunity. These are my recommendations, but you have to share with medical staff. Do you give any vitamin/mineral supplements? Her immunity is probably very low and needs to be built up. I don’t want to give too many specific recommendations, but general as each individuals taste and response is different. Research ways to boost immunity naturally. I understand this is tough, but take charge outside of what is possible with medical treatment.March 24, 2017 at 3:19 pm #89938
So sorry the news wasn’t better. Please keep us updated as how things are progressing and what you find out. Hoping for something positive. Thinking of you and hoping for the best.
DarlaMarch 24, 2017 at 6:50 am #89937
Sadly no good news. Tumor has grown and is pushing on the portal vein causing the portal hypertension which is causing the ascites. So gem/cis has failed. I asked about any other chemo – we can go on FOLFOX if we like. Mum did have response to FOLFIRINOX when first diagnosed.
I asked about MRR, MSI which is signs for response to immunotherapy (i.e. Keytruda) and they are negative. He said we can try Keytruda if we want, we would have to pay though. Chances of response are incredibly low but we know that MSI isn’t the definitive test to know if you will respond to immunotherapy and some patients have responded without this. Besides this he said he has nothing else for us. He said there are no clinical trials in Australia she is suitable for right now. He also offered a referral to palliative care however we don’t feel we will need this right now. She has been prescribed Furosemide and Spironolactone for the fluid and we will see how she responds. We noted after the 2 drains her Albumin dropped slightly.
We have decided we will go for Caris testing. I asked about many genes, he said there aren’t drugs for them (e.g. IDH1, FGFR) but after much research I have seen a bit around, the one drug for IDH1 in the US has showed promising results.
We have sent the scan to the surgeon in Sydney, however we aren’t holding our breath for a miracle from him. I wish we got his opinion far far earlier.
Our oncologist said he called colleagues all across Australia and couldn’t find anything for her. Heartbreaking to hear. We will try the FOLFOX, await Caris testing and see how we go.
What if she has a mutation and there’s a trial drug in the US? Can we even purchase it?
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