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Hi FRUSTRATED
I ve been on thi site a while but I’m ver frustrated by my situation.
I have had advanced CC for 1 yr 2 months. Gem/ cis and trad therapies made no dent in my tumor. I think I ought to really post this in another forum and I looked in the trials results but it clarified little for me.
BUT Im kind of anxious as to why no one seems to be on PEMGATINIB in the USA as a continual oral chemotherapy. I’m being given it as a “ maintenance therapy” so to speak in Spain. After the first course, it shrunk my tumor by 40% and at the last MRI there was no change. So it has helped so far and I obviously want to keep taking it .
The worst side effects for me are on my stomach. Permanent awareness of wind/ raw feeling. It’s very uncomfortable. ALL foods seem to bother me. I will bring it up with my oncologist. Please please let me know if you are taking it and how it’s going. I am the only person with CC at my hospital.
Well thanks for all. I hope you are all able to manage your symptoms ok so that you can get some peace.
Take care.
Hi Sunnyday,
Welcome to our community. I am sorry to hear your mother’s cancer has returned.
The Cholangiocarcinoma Foundation has an app you can use to help locate a doctor experienced with cholangiocarcinoma. Since our cancer is rare, many oncologists have only encountered a few cases so it is important to see someone who specializes in cholangiocarcinoma. I will attach the link at the bottom of this message. Your mother may not need to travel for a second opinion – some cancer centers offer remote second opinions. This is something to ask about when contacting prospective medical providers.
Has your mother had molecular (genomic) profiling of her cancer? You may be aware that newer cancer treatments focus on specific mutations that may be present in the cancer. Cholangiocarcinoma has several treatable mutations, using new treatments developed for our cancer (sometimes they are available through clinical trials) or treatments that were developed for other cancers. Molecular profiling can determine whether a patient has any treatable mutations.
I hope your mother’s current chemo treatment stabilizes her recurrence without too many side effects. Your support and help to her will provide much comfort in her new phase in this journey.
Take care, regards, Mary
Specialist map link:
http://www.cholangiocarcinoma.org/specialist-map/
Hello! My mother has been diagnosed with a recurrence of her cholangiocarcinoma. Physicians have said that surgery is not an option at this point. She has begun chemo infusions. We have been trying to receive second opinions seeing if the treatment she is receiving is the best possible. I would love to hear any suggestions on the best physician that specializes in this cancer. We are willing to travel. We are wanting someone that will look comprehensively through her case and provide some insight. Thanks in advanced to any suggestions!
Hello everybody,
Thank you very much for approving my application to become a part of this community.
My name is Michaela, 25years old, from Slovakia, living currently in Spain and unfortunately the story with cholangiocarcinoma began for us (my mum) this year in February/March. My mum is 53 years old, full of live and the best person in this world for me. In february she got only one of the symptoms – jaundice. We were afraid she got hepatitis, that time however we did not know how happy we would be if it was true.. all the examinations, placing the stent, months in hospitals, neverending story until the final diagnosis came around 2 months ago – Klatskin tumor IV not resecable, max one year of life..moreover she almost died from sepsis caused by huge inflammation + abscesses of the liver which is btw still present.. hence she was not able to get any of the treatments.. now she is still on antibiotics, the inflammation is much better however still not gone.. please, has anybody had the same/similar experience when the inflammation even after some months of antibiotics, months in a hospital is still present? They gave her first chemoterapy this monday but warned us it can have fatal consequences.. but she got a choice – either waits but then maybe no cure at all or she takes a risk, starts chemo and if her body takes it well maybe it will open the door for some possible other treatments, trials, or maybe but really only MAYBE surgery … i cant describe how proud of her I am that she was so brave and wants to fight.. so this is my story very briefly.. the reason I applied to be part of this community is that I feel really desperate I think I dont have to explain it to all of you, cause I am sure I am not the only one.. I love her so much she means a world to me. And I would do anything to help her and that she is here for many more years. I would like to know if any of you have/had similar experience and maybe can give us more hope that there is still a chance to not only prolong her life but a chance of having our life back again amd overcome this horrible disease? To be honest I spent around 3 evenings reading the stories here and I have to say it gave me so much hope and energy that I simply wanted to be part of this discussion and gain even more of it. Thank you.
Hello Mary,
Thank you so much for the great info, very much appreciated, and also for your concerns and support!! My research into VBA practices reveal a “kick the can down the road process then blame poor training or some other excuse for a wrongful denial of a claim. I’ve read that appx. 33% of VA disability claims are denied, and that 60% of those claims are unjustifiably denied.!?
I am currently out of VA for care only because I have a long, heavy traffic drive to Portland,Or. VA. My care there was very good, I couldn’t ask for better! The administrative side is another story! Thank you again!
Mike
Hi Mikesfightvba,
Welcome to our site. I am sorry you are facing the double whammy of a cancer diagnosis and an unresponsive bureaucracy that is supposed to be helping you. It is hard for me to understand why the judgment would be that intrahepatic cholangiocarcinoma is not liver cancer, when the word “ intrahepatic” means “within the liver.” Social Security Administration, also a government agency, in approving illnesses for compassionate allowances (expedited approval of disability benefits) lumps intrahepatic cholangiocarcinoma into a liver cancer category. Here is a link with this information. https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022225
There is some information posted on the Foundation website about Vietnam veterans’ issues related to cholangiocarcinoma. I don’t know if this is relevant to your Camp Lejeune case but I will post it just in case. Here is a link:
I hope as you are fighting this legal battle, you are at the same time able to receive good treatment. Please stay in touch, and a giant thank you for your service to our country.
Take care, regards, Mary
Hi everyone,
Thanks for the invite here! I guess I’ll lay out some of my info and hope to see some responses.
Camp Lejeune contaminated water vet, there in 1980. Diagnosed with intrahepatic cholangiocarcinoma, June 2019. I filed the first Va claim in August which was denied because they didn’t have the actual radiolgy, diagnostic, etc. paperwork. OK…filed a supplemental and was denied because my cancer does not fall into the “liver cancer ” requirements!! I’m stage 4, terminal, so it looks like I’m a good candidate to just kick the can down the road..?? This is a basic statement of my condition as gallbladder is also affected. We, my VSO advocate are skipping right to a singular Judge, which can take up to a year!! Being terminal and having help from my Congresswoman will expedite but still being denied as not a liver cancer is outright wrong!!
Hi Ricardostor,
Welcome to our community. Please let us know how we can be helpful. I hope you have found your way to the multitude of resources for patients and caregivers on the Cholangiocarcinoma Foundation website.
Regards, Mary
Hi Eve,
Welcome to our community. I am glad you have found us, and hope you have been able to explore the many patient and caregiver resources on the Cholangiocarcinoma Foundation website.
HIPEC is the acronym for hyperthermic intraperitoneal chemotherapy. HIPEC is a treatment involving surgery, where heated chemotherapy is introduced directly into the abdomen to bathe and hopefully eradicate cancer cells found in the peritoneum.
HIPEC has been used for a few cholangiocarcinoma patients. Here is a link to a study on HIPEC for cholangiocarcinoma that Gavin had posted some time ago.
https://www.ncbi.nlm.nih.gov/pubmed/30131104
As the description suggests, HIPEC is a very demanding treatment mainly deployed in specialized cancer centers. To explore whether your husband is a good candidate, it would be important to seek opinions at top medical facilities with strong capabilities in cholangiocarcinoma and other gastrointestinal cancers. The provider map available on the Cholangiocarcinoma Foundation website may be helpful if you are located in the U.S. The author list on the attached article above may also give clues about facilities that use HIPEC for our patients. (Click on “author information” to see where the authors are affiliated.)
If you search the discussion board for HIPEC, you can find some additional information as patients and caregivers before you have looked into this treatment.
I hope this is helpful. Please stay in touch. Take care, regards, Mary
My name is Eve, my husband diagnosed with Cholangiocarcinoma in April, 2018. He had a surgery removed part of his liver in September 2018. Prior to his surgery we were told his cancer is local and it can be removed, he then had chemotherapy after his surgery from November, 2018 to April, 2019. At beginning of June 2019, his oncologist inform us his cancer is back and spread to his abdomen, he developed Ascites because of Peritoneal Metastases had many times Paracentesis since June.
We had discussion with his Oncologist for HIPEC but she does not think it is a procedure can help him. Isn’t HIPEC is a effective procedure to treat patients with Perineural Invasion?
Hi Michelelynn0305,
Welcome to our community. I am sorry to hear about your mother’s diagnosis and that she is feeling poorly.
We are patients and caregivers here, so we are not in a position to offer medical advice. Here is some general information, and there are additional patient and caregiver resources on the Cholangiocarcinoma Foundation website you may find helpful.
Gemcitabine (Gemzar) alone is a chemotherapy sometimes offered to patients who are very elderly or in poor health, as it has fewer side effects and is easier to tolerate than other chemo options. Gemcitabine alone has effectiveness in treating cholangiocarcinoma, but it is somewhat less effective than the more common chemo regimen that adds cisplatin to the gemcitabine.
It can be difficult sometimes to know if adverse symptoms are side effects of treatment or due to the cancer itself. These are questions best handled by doctors. Cancer treatments usually include medications that address side effects and cancer symptoms, such as anti-nausea drugs or pain medications. Sometimes the initial drug the doctor prescribes does not work very well, in which case patients should ask for a different option. No patient should attempt to soldier through pain or nausea when there are many medication options that can help – it is just a matter of working with doctors in finding the best ones for each patient. If the medical facility where your mother is being treated offers palliative care resources (which address discomforts and side effects of illness and medical treatment), they might be able to help her feel more comfortable.
Concerns with diminishing appetite are often reported by caregivers. The initial guidance for patients not feeling hungry includes steps such as trying frequent small meals, avoiding hard-to-digest foods, choosing nutritious foods that are high protein/high calorie, offering foods the patient enjoys (rather than going overboard on unfamiliar or unappetizing foods believed to be more healthy) and using liquid nutrition products like protein shakes. If these types of remedies are not working, this should be reported to your mother’s medical providers as there may be a medication solution such as a better anti-nausea drug, or it may be important information relative to the progression of your mother’s cancer that might inspire a change in treatment. There are medications available that can stimulate appetite. We have not seem them much used with our cancer patients, but certainly this is something you can ask about.
The question of how to know if a patient is reaching end-of-life is a highly sensitive topic. Some of the major cancer organizations have posted good information on this question. If you internet-search “end of life signs” and “liver cancer” (or something similar) you will find information in reputable sites such as the American Cancer Society and the National Cancer Institute, that may help you assess how your mother is faring. If there are changes to your mother’s health that are concerning to you, the oncology staff where she is being treated should be able to offer advice on what to do.
Please stay connected to our community as you navigate your mother’s care. We are here for you, and there is a great deal of experience documented on the boards. I hope your mother feels better and that her doctors are responsive to your concerns.
Regards, Mary
Hello,
My 81 year old mother was diagnosed with aggressive Klatskin Cholangiocarcinoma in March 2019. Prior to diagnosis, she was a very active with no other health issues. She did need to have stents placed for a bilirubin of 32 which is now down to 0.5. Not a surgical candidate; only offered systemic chemotherapy with Gemzar.
She is now weak, sleeping 12-16 hours per day, no appetite with constant nausea and spontaneous vomiting despite medications.
Can anyone offer advise on foods that may help increase her appetite.
Also, is this normal with such a low dose of chemotherapy or is it disease progression? Thank you.
Hi everyone, I was trying to reply to my original post but couldn’t figure it out. I am very frustrated with the doctors. Nobody can tell me anything as it relates to progression of this disease. We know it’s already spread to her liver and in 3 weeks she has gone from being tired, but in good spirits to sleeping almost all of the time, her left arm is so swollen, and today she isn’t eating and has nausea.
Her oncologist visit with Dr. Gold is on June 3rd, but she’s so tired I am not sure I can get her there.
I have asked the rehab facility is the increase in pain meds in making he super sleepy or is the cancer progressing that quickly.
I can’t get any answers.
Hi Matthew,
Welcome to our community. There is abundant information on the Cholangiocarcinoma Foundation website for newly-diagnosed patients and their caregivers.
There are medical research studies on whether strong cancer treatments such as surgery, chemo and radiation can be safely pursued if the patient is at an advanced age. My recollection of the findings is that, in general, treatment decisions would depend on how robust the health status is of the patient; in other words, that age alone should not be the deciding factor for whether or not to treat a cancer. I would add, as a patient, that the patient’s view on treatment should be carefully considered. It is important to be sure your father is being seen by doctors with experience with this rare cancer. Sometimes doctors who have not seen other cholangiocarcinoma patients may be unfamiliar with the various treatment options, which have evolved in recent years.
For patients not able to have surgery, the most typical first-line treatment is a combination chemo of gemcitabine with cisplatin. For some patients not able to tolerate the side effects, gemcitabine alone might be tried. There have been a few older patients on this board reporting being treated with capecitabine, another chemo. Capecitabine comes in pill form. If the cancer is confined to the liver, there are some possible localized treatment options, e.g., radiation. It is a good next step that your father will be seen by an interventional radiologist.
If a patient has blockages in his or her bile ducts, then steps are taken to address that, e.g., with stents or drains.
This is hard news to receive just before the holiday season. I hope your father is comfortable and has any symptoms under control.
Regards, Mary
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