February 15, 2019 at 8:53 am #98163
Thank you, Gavin. I hadn’t thought about contacting Dr. Giles. That is a really good idea. As for mentors, my mom and I both have great ones through CC. Unfortunately, mom hasn’t been ready to connect with hers and I haven’t had time. But, hopefully, soon we will.
Thanks, again.February 4, 2019 at 8:53 am #98105gavinModerator
Feeling overwhelmed with all of this is so normal, we as carers have all been there where you are right now. I was my dads carer for 18 months as he fought CC and was my mums carer for 12 years. She had COPD and passed away in Nov last year so I so know what you feel about feeling overwhelmed. Something or rather someone who may be able to help you deal with this feeling is Dr Giles and submitting a question to him. He has helped a lot of the members here and their families deal with the psychological aspects of all things CC related, caring, dealing with emotions etc and he may be of use to you just now.
Something maybe for you to think about perhaps? If so, he can be contacted through the “Ask a Question” link that can be found on this link here –
Mary’s suggestion of a CC mentor for you is excellent one as well, and of course, you have all of us for support too so please keep on coming back here and we will help if we can.
My best to you and your mum,
GavinFebruary 3, 2019 at 11:55 am #98093
What an insightful and kind response, Mary. I am grateful for your support. It is true that all of this is just so overwhelming to my mom. I don’t blame her. I would feel overwhelmed, too. In fact, there are moments when I feel overwhelmed with it all, and I am not even the patient! I can’t even begin to imagine what it’s like for her. But a mentor could. I had requested one for her months ago, and CC found her a wonderful one, who reached out to her on a couple occasions. Mom just hasn’t been ready to respond yet. I was thinking if we found someone local, and someone who is also a widow, someone she could meet at a coffee shop… it might be easier for her to connect… but who knows? Again, it is her choice. There is such a finite set of things CC patients can control and it is important that they are the ones controlling them… : ) I’ve also connected her to a wonderful hospital social worker, who checks in on her regularly.
It’s funny. When you said the patient can fear disappointing the caregiver, that never occurred to me, because I am so worried about letting her down. It might be worth a conversation, eh?
Anyway, thanks again, Mary.
I hope you give yourself the same kindness and care you give others.February 2, 2019 at 10:59 pm #98084bglassModerator
Welcome to our community. I am sorry to hear of your mother’s diagnosis. Your story of the wonderful doctor who reached out to you and your mother is really heart-warming.
You mentioned your perception that your mother might enjoy connecting with another patient. I wanted to alert you to the Cholangiocarcinoma Foundation’s mentoring program, CholangioConnect. Through this program, your mother could be matched with a compatible mentor, such as another patient who has some experience dealing with the cancer. Here is the link:
Gem-cis is the workhorse chemo for this cancer. Hopefully it will stabilize the cancer without too many side effects.
Speaking as a patient, it is wonderful the way you articulated your concern that your mother take the lead in choosing how to pursue treatment. Sometimes as a patient, you worry that you might be disappointing caregivers with your treatment choices or you feel overwhelmed by all the information. There is a risk that some of the patient’s concerns might get a little lost in the shuffle of trying to arrange treatment. You described so well the importance of letting your mother “find her way.”
Take care and regards, MaryFebruary 2, 2019 at 3:01 pm #98082
I joined this board a little while back, but it seems like I have been going nonstop since. Hoping to find time to sit still more, engage and contribute to this wonderful community.
I am the primary caretaker for my 78 year old mom, who was diagnosed with inoperable intrahepatic cholangiocarcinoma in October 2018. We are fortunate to be working with Massachusetts General Hospital in Boston.
An abdominal scan done at a local community hospital on October 24 showed a 5.3 x 4.8 cm mass and multiple enlarged upper abdominal lymph nodes. This hospital was unsure about what it might be, but felt chances were good it was benign. They thought it wasn’t worth attempting a biopsy, because it was too dangerous, due to the depth and vascular involvement. Nevertheless, they supported my wish to go for a second opinion. I sent the scan to two Boston hospitals. We met with one doctor at one hospital who asked lots of questions, but had no answers. He ordered a biospy, which was successfully done. In the meantime, my mom was beginning to feel overwhelmed and asked that we just cancel our second opinion at Mass General and stick with the one that performed the biopsy. After I canceled our appointment with Mass General, I received a call from the director of their Liver Surgery Department, Dr. Ferrone. She said my mom had a bile duct cancer. (She knew it, just from looking at her scan!) She encouraged us to meet with her… and patiently, compassionately, honestly explained why. I felt devastated, but also amazed and profoundly touched that this world renown doctor took time out of her day to call and talk with me. I told my mom what Dr. F said and begged her to go to Mass Gen with me. (Meanwhile, we still hadn’t heard back from the first hospital.)
An October 30 MRI at Mass General showed the mass measuring 4.5 x 4.4 x 5.6 cm, with a portion wrapping around the middle hepatic vein, and a possible extension, completely inseparable from the right portal vein and with extensive/broad contact with IVC.
On November 8, a PET-MRI (done through a research study) showed a local advanced 6.2 cm mass, compromising the middle hepatic vein, IVC, right portal vein, with likely non regional lymphadenopathy. Surgery was ruled out, for the time being. Her CA 19-9 was 240 and her CEA was 1.4 (normal). Liver tests were all normal.
On November 14, Mom underwent a portal vein embolization and beginning December 4, she did 3 weeks, 5 days a week of oral Xeloda/photon radation. We hoped this would be enough to grow the good and shrink the bad, so we could proceed with resection. But, the CT scan on January 18 showed no change to the primary and satellite tumors, perhaps a little shrinkage in her lymph nodes… and a suspicious 7 mm groundglass nodule in her lung to watch. (The best news – she wasn’t filled with mets and there were no visible new lesions.)
On January 22, her CA 19-9 rose to 321. CEA and liver tests still within normal range.
On February 6, mom begins a Gem/Cis infusion, one day a week, for 2 months. I hope it goes ok and does what we need it to do. I am also hoping we can get some genomic testing done. I just read on another board here that MSKCC offers genomic testing for free to cholangiocarcinoma patients. (That is because they are so special!) What a great thing that would be.
We have not been told what stage she is. At what point do you think they will know?
On another note, my mom lost her husband years ago, and struggles with not having him by her side. I know she loves me and is grateful for all I do, but it’s just not the same for her. She really feels alone. She is almost ready to join a support group and I think that will help her greatly. Who knows? Perhaps, one day she will be ready to check out this board and the Facebook groups. My dream of dreams is to connect her with another single cholangiocarcinoma patient around her age, in the Massachusetts area. But for her to connect with anyone would be a blessing, too.
This journey is hers and I need to let her choose if, how and when she does things. Sometimes, that’s hard, because I just want the very best for her. But I think the very best I can do for her… is simply to accompany and support her as she finds her way, in her way.
Thanks for listening. I welcome all ideas.
Hoping for the very best possible outcome for all,
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