Tagged: 77 year old mom - follow up
March 15, 2020 at 11:07 am #99918MikesfightvbaParticipant
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!
MikeMarch 13, 2020 at 9:18 pm #99908
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, MaryMarch 13, 2020 at 7:50 pm #99907MikesfightvbaParticipant
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!!January 8, 2020 at 5:47 pm #99535
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, MaryJanuary 8, 2020 at 1:35 am #99531RicardostorParticipant
Hi all. Nice to be a part if this community!July 24, 2019 at 5:28 am #98894
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.
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, MaryJuly 23, 2019 at 4:57 pm #98892Eve-ChenParticipant
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?July 9, 2019 at 11:04 am #98837
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, MaryJuly 8, 2019 at 12:42 pm #98835Michelelynn0305Participant
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.May 22, 2019 at 4:12 pm #98653VsinnemaParticipant
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.December 20, 2018 at 8:11 pm #97924
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, MaryDecember 20, 2018 at 2:34 pm #97922XtcinlaParticipant
My name is Matthew and my 90-year-old father, Jim, was just diagnosed with stage 3 Cholangiocarcinoma on Monday. The doctors say he is not a candidate for surgery, chemo or radiation. He is seeing an interventional radiologist next week. I am trying to find out any info on this cancer and any types of treatment that might be available to him. I know he is old but I’m not ready to lose him yet. Any help would be greatly appreciated.December 20, 2018 at 10:41 am #97921DanaGParticipant
Thanks so much for the information. We’re still waiting for a decision from the insurance company on MD Anderson, but the Specialist Map was very helpful in identifying other options in case MDA doesn’t work out.
Thanks to you and the foundation for being a source of support.
DanaDecember 18, 2018 at 5:12 pm #97909
Welcome to our community. I am sorry to hear about your mother’s diagnosis.
You are right to point out the need to find a doctor experienced with cholangiocarcinoma. The Cholangiocarcinoma Foundation website just posted a great new tool that can help you identify medical providers with cholangiocarcinoma experience. Here is the link:
As you can see, there are some specialists in the Fort Lauderdale area. I recall a few patients in Florida who have posted on the board have been treated at Moffitt in Tampa.
Generally once diagnosed, it is important to get a surgical opinion if the cancer is just in the liver and bile ducts, to see if it can be removed surgically. If the cancer has spread or if its location in the liver makes surgery impossible, then other treatments – usually chemo but sometimes radiation – are brought to bear.
I hope you have been able to take a look at the many resources on the Foundation website for newly diagnosed patients and their caregivers. Please keep us posted on how your mother is doing and send any questions our way.
Regards, MaryDecember 18, 2018 at 11:12 am #97908DanaGParticipant
I hope I’m posting in the right place, but if not, please feel free to redirect me.
My mother, age 70, was recently diagnosed with cholangiocarcinoma. We are heartbroken and looking for the best place for her to receive care.
My parents live in Fort Lauderdale, Florida, but we are trying to get her to MD Anderson in Houston, however the insurance company is still reviewing the out-of-network financial agreement, which apparently is much higher than they typically pay.
It took 5+ weeks from when we first saw her oncologist in Florida to get the CC diagnosis. In the mean time, he thought she had metastatic colon cancer to the liver and has been treating her with the associated chemo regimen. He said she is “responding well”, but that it’s the second- versus first-line treatment for CC. He wants to look at one more round of labs before deciding whether to switch her to first line. I’m thinking that first-line is the way to go since I haven’t read great things about second-line. This is one of the many reasons that we’re eager to get her to a cancer center with a multidisciplinary team and CC specialists.
In case we’re not able to go to MDA, I’m wondering if anyone could provide some alternatives within Florida. Do you know which is the best place in Florida to receive care for cholangiocarcinoma? Since it’s such a rare cancer, we want to make sure we go somewhere with the best possible specialists.
Thanks so much,
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