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I sent you a private message as I’m having trouble posting again!
It’s kind of hit or miss Gavin, but I’ll keep trying! 🙂
Melinda Bachini may be able to help you connect with someone in the Netherlands, or at least with the family of one person I know who lived in the Netherlands. He attended the CCF meeting in Salt Lake City back in 2016 I believe, and had been receiving care at Memorial Sloan Kettering in NYC. He would fly back and forth to receive treatments. I’m probably remembering incorrectly, but I thought he had an HAI pump.
This support group on Facebook is super helpful too. https://www.facebook.com/groups/CHOLANGIOCARCINOMAsupportGroup/
You may very likely find members who are from Europe or other countries, and perhaps discover how they are navigating treatment or seeking acceptance into clinical trials within the US or elsewhere. It is a really wonderful group, and ties in well with the information provided here on the discussion board. 🙂
Here is some information for you from MSKCC (Memorial Sloan Kettering Cancer Center).
Clinical trials info/available trials at MSKCC
Drs. Ghassan Abou-Alfa and William Jarnagin are regular attendees of the CCF annual meeting in Salt Lake and are the PIs on these two clinical trials. You could always reach out to them directly and ask their nurses/clinical trial assistants for advice.
January 12, 2018 at 11:48 am in reply to: Locally advanced non-resectable cholangiocarcinoma, seeking multiple opinions? #96442
- This reply was modified 3 years ago by karend.
Hello Family38! Welcome to our discussion board! I am sorry that you have had to find us, but am glad that you are here.
Here is some information that you may find useful:
With a diagnosis of Cholangiocarcinoma, a team approach is absolutely necessary. Wherever care is received (and yes, seeking multiple opinions is warranted), there should be a care team; this may include a medical oncologist, surgical oncologist, radiation oncologist, gastroenterologists, interventional radiologists, social workers to help with insurance claims/etc., palliative care practitioners to manage distressing symptoms, nurse navigators to assist with the plan of care, etc.
Additionally, seeking care at a major center who sees cholangio patients routinely is extremely important. I believe I see that you tagged Sunnybrook for your post. This is in Canada, correct? Have you sought a visit with Princess Margaret?
I did read another one of your posts re: Paclitaxel + Gemzar/Cisplatin. This drug combination is considered “chemotherapy” as these drugs interfere with the functioning of the cancer cells (i.e. interrupting cellular mitosis). Here is an article you might find helpful:
The standard of care currently is a combination of the drugs Gemcitabine (Gemzar), and Cisplatin. This regimen may allow for the tumor to shrink enough to where it is deemed operable. However, genetic testing of the tumor is important as well as this will allow the physicians to potentially match current drugs or even clinical trial drugs to the tumor. There are many posts on this board (and current members) who are well versed in tumor sequencing and will be so helpful as you seek information to help your father.
I hope this information has helped you a bit!
Member, Nursing Advisory Board, The Cholangiocarcinoma Foundation
January 11, 2018 at 4:01 pm in reply to: Palliative Care in Oncology Symposium/Pain management #96426
- This reply was modified 3 years ago by karend.
You’re welcome, Aroha!!
I’m sorry that I took so long to respond!
Although I do not want to recommend physicians, here is a link to the advisory boards (medical/clinical/scientific) for the foundation. https://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/advisory-boards/
Look over the physicians and see where their home facilities are located. You could even do a search for them on this patient board as many of these physicians (certain ones I know for sure) have been mentioned here numerous times. There is one physician in particular from MD Anderson who is one of the top Cholangio physicians, and is on the clinical advisory board.
Are you coming to the annual meeting this year in Salt Lake City? If not, it should be live-streamed and you will be able to hear the latest info and research on cholangio, and see the physicians who are highly involved in caring for people with this cancer.
My handsome rooster, Nibbles. Chickens are interesting pets!
It gets better every year! One of these years I will need to get over to N.H. to join in the fun!
EGFR Inhibitors: Cutaneous Side Effects and Their Management
(Side effects noted in the skin).
I’m so sorry to hear, Angela.
Please keep in touch. We are all here whenever you need us!
I will be praying for you all, and I am so sorry.
Spend time together and visit when she is awake even if she is confused, which may happen. The hospice nurse may need to get orders to increase the dose of oral morphine, or how often it can be given. Sometimes it may seem like too much, and this can be scary, but it will be alright. It is never wrong to call the hospice nurses if you all or your MIL’s sister is worried or afraid. The nurses are there to help.
Please do not hesitate to email me if you want to talk, or we could even talk on the phone if this would help you.
- This reply was modified 3 years, 2 months ago by karend.
I’m so glad to hear that hospice is helping your MIL to feel better. How is her sister doing?
I must preface this post with the fact that I am not a radiologist, but here is a very good and detailed article that may help to answer your questions.
The article is a systematic review which uses the highest quality evidence to present findings. The authors discuss the use of PET/CT in gallbladder and cholangiocarcinoma and go into more specifics on the diagnosis of intrahepatic cholangiocarcinoma (IHCC) using PET/CT.
If you scroll down to section 3.2.2, the authors cite one of the studies in their review which found that PET/CT in the diagnosis of IHCC had a very high sensitivity and specificity to detection of the primary cancer.
Thank you for sharing that you MIL is doing so well! I am happy to hear your news.
Patient tools/mobile apps from the Oncology Nursing Society including ” Self-Care During Cancer Treatment”, and “My Care Plan” for Apple and Android.