bglass
Forum Replies Created
-
Posts
-
Hi Dolan11661,
Thank you for posting — but I am very sorry to hear about your sister’s diagnosis which brought you to us.
Generally the initial treatment for advanced cholangiocarcinoma is chemotherapy (typically gemcitabine and cisplatin). If a second-line treatment becomes necessary, it may involve a different chemotherapy or a targeted treatment if an appropriate one is available. So it would be worthwhile to ask about genomic profiling with your sister’s doctor.
In terms of medical approaches to ask about, you may wish to see if the cancer center where she is being treated has palliative care resources to offer. Palliative care is directed toward relieving pain and any side effects from treatment.
Be sure and ask your sister what she wants to do, how she views different care options available. Encourage her to speak up about any pain or discomfort she is feeling. Your sister must feel much comfort in knowing you are looking out for her.
I hope the appointment on Thursday goes well and brings some answers. Please send any questions you or your sister have our way. Our community’s wishes and prayers are with you and your family.
Regards, Mary
Hola Samieles,
Bienvenido a nuestra comunidad. Espero que otras colegas con más dominio de español también puedan contestar.
Lo siento mucho que su padre ha recibido un diagnosis de cholangiocarcinoma. En EEUU lo más frecuente es primero averiguar si seria posible remover el cancer con cirugía, y si no, pensar en tratamiento con quimioterapia. Como cholangiocarcinoma es un tipo de cancer no muy común, es importante buscar médicos especialistas con experiencia. Una segunda opinión valdría la pena si tienen dudas en cuanto a lo que dice el oncólogo.
Ojalá que Ud. y su padre puedan encontrar médicos especialistas y más información sobre opciones de tratamiento. Voy a ver que información tenemos en español para ayudarles.
Atentamente, Mary
Repeating in English what I wrote above in my not very fluent Spanish. Samieles writes that his father has been diagnosed with cholangiocarcinoma, but has not been offered any treatment because the doctor said nothing could be done medically. He is wondering about seeking a second opinion. So far, his father is feeling well.
Hi Samieles,
Welcome to our community. I hope that other colleagues with more command of Spanish can also respond.
I am very sorry that your father has been diagnosed with cholangiocarcinoma. In the United States, most frequently it is first considered whether surgery is possible to remove the cancer, and if not, chemotherapy may be considered. Since cholangiocarcinoma is not a common type of cancer, it is important to look for experienced medical specialists. A second opinion may be worthwhile if you have doubts about what the oncologist is saying.
I hope you and your father can find more information on medical specialists and treatment options. I will see if we have information in Spanish to help you.
Regards, Mary
Hi Vibras22,
Welcome to our community. I am sorry that your mother received this diagnosis.
Certainly your mother should feel comfortable with her doctors, and if she is not comfortable then it is reasonable to consider changing. There is a tool on the Cholangiocarcinoma Foundation website that can help you identify doctors who have experience with our rare cancer. I will add the link to the bottom of this message. Hopefully there are other doctors from the same hospital with cholangiocarcinoma experience. It seems unlikely to me that there would be any problem with her care if your mom changed doctors – everyone in the hospital is a professional and such changes do happen at times.
I would add that there are a few doctors who are experts in their field, but not the best in terms of bedside manner. There may be moments when a patient wishes the doctor had better manners, but tolerates this failing because the standard of care is very high.
If your mom decides to make a change, be sure the new doctor has a lot of experience with this cancer.
I am happy that the chemo has reduced your mom’s pain. For the chemo side effects, you may wish to see if the hospital has palliative care resources to help with them. Palliative care is a separate medical specialty that helps patients manage side effects or pain from a serious illness. I found in my own case that the oncology center nurses had a lot of good tips on how to cope with side effects.
Please stay in touch and let us know how your mother is doing. She is very fortunate that she can count on your help and support as she pursues treatment.
Take care and regards, Mary
Hi Neale,
Thank you for sharing this wonderful news. Walking on air describes it perfectly. Your description of your wife as your “pillar of strength and love” really captures how our caregivers support us and get us through difficult times.
Does your doctor plan more treatment? Do you have a plan for continued scans and surveillance?
I hope you will stay in touch and let us know how you are doing.
Take care, regards, Mary
Hi BillM,
This is tremendous news. Thank you for sharing it – made my day. Only a small percentage of our patients have the MSI-high mutation found in their genomic profiling, but some who have this have done very well with Keytruda. I hope you continue to feel better.
Take care, regards, Mary
Hi Hesw,
The U.S. website for clinical trials is https://clinicaltrials.gov/. This registry includes trials in other countries so you can use it to search for trials in Spain and any other country. For our cancer, try searching cholangiocarcinoma, liver cancer, bile duct cancer and solid tumor to find trials for which you may qualify.
Often medical authorities outside the United States post a registry of clinical trials. I looked for Spain using my deficient Spanish skills and found the following: https://reec.aemps.es/reec/public/web.html – please check this carefully to be sure it belongs to an official government agency, but this site does seem to have information on some clinical trials for cholangiocarcinoma.
I hope you find some promising studies to look into. Each clinical trial on a registry should give a point of contact you can call or write to.
Take care, regards, Mary
Hi Hesw,
Thank you for sending a question. I think everyone feels apprehensive about starting a new treatment. I know I feel that way. One benefit of being treated through a clinical trial is your health status will be closely monitored. You will have a lot of opportunity to ask questions, and the doctors will be on the lookout for anything that seems amiss.
Please stay in touch and let us know about your experience with the trial.
Take care, regards, Mary
Hi NorthBird,
Welcome to our community. I am sorry to hear of your husband’s diagnosis, however, and very much hope his June scans bring reassuring news.
Please take a look at the many resources for patients and caregivers on the Cholangiocarcinoma Foundation’s website.
My impression is there are very good doctors and medical facilities in Canada, but as with care in the U.S., it is important to be sure your medical providers have expertise in our rare cancer. The results of your husband’s molecular profiling may open the door to additional treatment options if the gem-cis starts losing effectiveness at a future point. Please be sure to push your husband’s doctors to find good remedies for any chemo side effects he is feeling. I remember when I was on chemo, the first nausea medication did not work, but the second one prescribes was better. There is a lot of advice posted on the board about how to address appetite and digestive issues.
Please stay in touch, and let us know how your husband is doing.
Take care, regards, Mary
Hi Hesw,
It is good to hear from you. Our community is always a safe place to express your concerns, ask questions and connect with others who are walking the same path.
Like Hannah who answered earlier, I am wondering if you had genomic profiling done to see if your cancer has mutations for which there are available treatments, including in clinical trials. For some mutations found in cholangiocarcinoma, there are treatments that are promising. In other cases, our patients are found to have mutations that are more commonly found in other cancers, and treatments used for those cancers may have benefit. If you have not been tested for mutations, this is something to ask your doctors about.
Because our cancer is rare, it is the case that many treatment options are going to come through clinical trials. I agree that this is something for you to consider. Trial participation offers potential benefits for our patients, as Hannah notes. But I am hoping that first you see results from your current treatment.
Cancer is tough, and it can be discouraging to deal with the many treatment ups and downs. You had some positive outcomes from the second chemo tried, and hopefully the new treatment can stabilize your cancer further. If the cancer or chemo are causing pain or adverse side effects, be sure to push your doctors to address them so you feel as well as possible while you are receiving treatment.
Take care, please stay in touch,
Regards, Mary
Hi Hesw,
Thank you for posting a question. If you are wondering about this, other readers are probably wondering as well.
Your question comes up from time to time on the board. My understanding is some of our patients have found relief from chemo side effects with medical marijuana products. I am attaching an article from the National Cancer Institute that reviews evidence on medical marijuana for cancer patients – if you scroll down to the bottom of section 7, the authors reference your question re impact on chemotherapy effectiveness. Here is the link: https://www.cancer.gov/about-cancer/treatment/cam/patient/cannabis-pdq
I hope this is helpful. Most cancer research organizations and some of the major cancer hospitals have information on their websites about medical marijuana products. Just be sure you are looking at sources that come from expert cancer organizations as there is a lot of misinformation on the web. If you want to try any supplemental treatments, be sure to first consult with your doctors in case they could have some sort of adverse interaction with your treatment or medical status.
Hoping other folks on this board can chime in with their experiences,
Regards, Mary
Hi BillM,
It is good to hear from you and thank you for letting us know how you are doing. It sounds like there is good news in your report — that your treatment has the cancer in retreat. What are your doctors proposing to address your “dead liver?”
I am also thankful to hear that you are no longer in pain. Fingers crossed your good news continues.
Regards, Mary
Hi Anna,
I want to join Board colleagues in warmly welcoming you to our community. There is a lot of good information and advice that can be tapped here.
I wanted to second Hannah’s point that “overall stable” is a good result. I hope your mom enjoys a good long run of stable results. If the cancer begins to progress, typically doctors will then switch treatments to stabilize the cancer again. So it is good that in your mom’s case, some targetable mutations have been identified, which may become the Plan B should a new plan be needed in the future. Usually doctors will keep going on one treatment if it is controlling the cancer, but will switch as soon as they see signs it is losing effectiveness.
I hope your mom continues to feel well. Please stay in touch and send any questions or concerns our way.
Regards, Mary
Hi Genevieve,
It is good to hear from you again, and especially the good news that your husband is doing so well. Thank you for helping with doctor suggestions. The Cholangiocarcinoma Foundation posts a medical providers tool but our data source is U.S. based so it regretfully does not offer information on cholangiocarcinoma specialists outside the U.S.
Take care, regards, Mary
Hi Gli50,
Welcome to our community. I am sorry to hear about your wife’s diagnosis, and hope she has been able to identify medical providers who have experience with our rare cancer.
Chiming into the good advice you have heard from other board members, our patients are encouraged to look into genomic profiling of their cancer. We have had a few patients who have reported doing well with pembrolizumab, but they tended to have a specific mutation that responds to this treatment. If your wife knows the genomic profile of her cancer, this information can help in making treatment decisions.
Gemcitabine plus cisplatin is the most typical first line chemo prescribed for unresectable patients. It has a decent track record for stabilizing the cancer for many patients. A lot of patients and their caregivers who have posted on this board have been treated with gem-cis, so if you search the board for the chemo ñames (or any other treatment name) you can find stories of patient experiences with that treatment.
Our colleague Gavin posts medical articles about cholangiocarcinoma treatment advances, which patients can then ask their doctors about. One treatment that has been added to gem-cis with promising early results is abraxane. This is an example of a treatment option your wife may wish to ask her medical providers about, to see if it something potentially beneficial. Here is an article Gavin posted on this combo treatment. https://www.curetoday.com/view/addition-of-abraxane-to-standard-of-care-may-prolong-survival-for-advanced-biliary-cancers
The Cholangiocarcinoma Foundation website has many resources for newly diagnosed patients and their families.
Please stay in touch and send any questions our way. Because our cancer is rare, it can be hard to find information. The patient and caregiver groups on social media are additional ways to find information and support.
Take care, regards, Mary
