marions
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summer…looks like your mom has reached maximum benefit with gem/cis. Has a second line of treatment been recommended?
Hugs
MarionBilly…I would not worry to much about the lung nodule, it may just sit there and cause no problem. Wait and see is the general approach, as there is a chance it may disappear. I don’t know much about PSC, but wonder whether that is infuencing Kathy’s markers. Try to not worry too much (I know is tough to do) but she is in good hands with the physicians. Remember, we compare this cancer to that of a roller coaster ride and depending on the situation we learn to adjust along the way.
Hugs to you and Kathy,
Marion
Arapro….fantastic, you appear to handle your treatments in the most incredible way. Keep it going.
Hugs
MarionJdow….this study is listed on our website in patient friendly version.
http://cholangiocarcinoma.org/a-phase-2-open-label-study-in-patients-with-cholangiocarcinoma/Good luck and please keep us posted. Ultimately I wish for all participants to discuss their exprience on our site. One of the most difficult part about this cancer is that patients feel isolated and alone with this cancer.
Hugs
MarionJJGunni….granted, Immunotherapy is still under investigation but the thousands of postings on this site contain absolutely no hint of contraindication. MD Anderson is treating your sister agressively (bili 7 rather than the required 2) but as suggested – molecular testing can be performed via a liquid biopsy. (Blood test). This type of testing is most accurate for stage III and IV, as at this point a higher volume of tumor circulating cells can be detected.
You are mentioning the worsening of dysphagia and I am wondering whether it’s related to weekness and/or lack of fluid. Perhaps you could investigate hydration therapy through an IV line, the patient receives the necessary fluids faster than by drinking them.
Additionally, oral hygene is of most importance. Biotene has great products https://www.biotene.com/dry-mouth-products/gentle-oral-rinse/
Wishing for the absolute best
Hugs
MarionAdditional important information regarding the use of Keytruda (Pembrolizumab)
Quote:
The approval provides another option for some patients who would not otherwise be candidates for treatment with pembrolizumab, such as those with pancreatic cancer, Dr. Gulley continued. But for some cancer types, he cautioned, only a small number of patients typically have these genetic features.These genetic features can spontaneously occur in tumors and have been found in patients with several cancer types—most commonly colorectal, endometrial, and gastrointestinal cancers.
Compared with other tumors, dMMR and MSI-H tumors have a higher frequency of DNA mutations and, as a result, higher levels of abnormal antigens.
Things are looking up for our cancer. Yeah…
Hugs
MarionAnelko……sorry you had to find us, but we happy you are here. Sorry to also hear of the colon cancer your Mom is fighting,
I suppose your Dad will have a biopsy, whether the cancer has spread to his liver, which not always is the case with this cancer. In the meantime he should have a much better level of comfort due to the inserted stentYou English is perfect and we are looking to engaging in many more discussions with you
Hugs
MarionDearest Red….Please accept my most sincere condolence on the passing of your husband and hero, Tom.
No words can help ease the pain, but know that Tom will never be forgotten in our hearts and on this site.May your heart begin to heal…..one day at a time and may your memories become the treasue deeply embedded in your heart.
Hugs and love,
MarionSorry, I forgot to add the link to the webinar provided on our website:
http://cholangiocarcinoma.org/videos/Hugs
MarionKgroft…..Perfect. Obtaining a second opinion from a center treating a high volume of cholangiocarcinoma patients assures you that the treatment protocol is on target. Thanks also for sharing any type of VA news with us. We have much to learn from you.
Good luck with your appointment at MD Anderson.Hugs
MarionSo thrilling to hear of another successful surgery and happy to know that the liver is regenerating at a rapid speed. This is the kind of news we thrive on. May your dear wife continue to do well and enjoy a life without this cancer.
Hugs
MarionKgroft……I feel for you. it’s such a difficult answer to receive, but liver transplanations cannot be performed for patients with recurrent disease as it has become systemic. Transplantations happen rarely for our cancer, but those with Stage I, localized nodules no larger than 3 cm may be eligible. Take a look at this webinar: What Patients Need to Know About Hilar Cholangiocarcinoma and Liver Transplant.
You would not want your husband to undergo the rigious regiment prior to a transplant only to find the cancer is invading the new liver as well.Hugs
MarionLaura….already you have received excellent adive from Debbie and positivity. You are doing everything a good advocate will do in that you are searching for answers to this rare cancer.
Here is some additional advice:
Most importatnly Obtain a second professional opinion from a center treating a high volume of
cholangiocarcinoma patients. These centers provide a tumor board consisting of a surgeon, oncologist, radiologist and pathologist.
Peruse the discussion board and take a look at the Newly Diagnosed thread
Take a look at the main website http://cholangiocarcinoma.org
Make sure DNA and molecular testing is requested and sent to a lab such as Foundation One or Caris or another qualified lab.We are here to help and are with you, all the way.
Hugs
MarionKathy…..welcome, happy you found us.
Historically, liver cancer (HCC) and intrahepatic CCA were grouped together. Extrahepatic CCA was grouped with gall bladder canceer. The foundation is working hard on trying to separate CCA from liver not only for statistically purposes, but also for the reason that both diseases are completely different from each other. As of today we have not been able to move this mountain, but some day we will achieve what we set out to do.
Unless we hear otherwise I must assume that the VA grouped liver and intaheptic together.
Would love to know more about LeJeune group and hope for someone familiar with this group come forward and help us out.
Again, glad you joing our special family
Hugs,
MarionThe American diet is dictated by the food industry, which at no means has shown to be a healthy diet. Only recently I wanted to purchase sour cream not the modified version, the real thing. I found only one company offering it: cream and cultures. All others added ingredients I was unfamiliar with. The question is: why have American’s been so infuenced by color, shape, texture, and a whole lot of what I call garbage?
I have to agree with Catherine in that cancer patients have enough to deal one would not want to take away the little pleasure they have. Adding protein is an excellent idea, making sure they don’t loose too much weight is of most importance, but I would not worry about much else.
The below link fits this conversation.
https://www.cancer.gov/about-cancer/tre … k/_255_tocHugs
Marion
