Forum Replies Created
February 13, 2020 at 9:11 pm in reply to: My mom ICC update (chemo, supplements, FoundationOne cdx genetics, proton?) #99675
It is great to hear from you again and especially that your mom has done so well with treatment.
The experiences reported by our patients are usually that they stick with a treatment as long as it is working, but have some Plan B’s in mind for when the day comes that a treatment stops working or the patient cannot tolerate it any more. My impression is that doctors would be reluctant to stop a treatment that is working if the patient is doing well and feeling well.
It is a good idea with cholangiocarcinoma to have genomic profiling because there are now drugs available through clinical trials that have effectiveness for patients with specific genomic defects or mutations. When you receive the results of your mom’s profiling, then you can look into what drugs for any discovered mutations are being tested locally.
Proton treatment for cholangiocarcinoma is somewhat new, and radiation is a less common treatment for us generally, so we have not heard from many patients who have had proton treatment. There have been some research studies that can be found through an internet search.
I would recommend before pursuing proton or other specialized radiation treatment at a distant location, that you seek expert opinions that it can do some good. Some of the major cancer centers in the U.S. offer remote second opinions – you just need to send records electronically. The medical centers you are considering in Germany and Japan may offer the same service. Radiation treatment is very specific to the tumor’s location relative to other organs in the gastrointestinal tract. It might be the case that any of several radiation options would be feasible in your mom’s case making it easier to find treatment close to home, or it may be that the tumor location makes any form of radiation risky. Radiation treatment can be difficult to tolerate for some patients, so it is good to know in advance what side effects might be possible.
I hope your mother continues to do well. She is very lucky to have such a devoted son looking after her.
P.S. Here is an article that Gavin previously posted which discusses the range of treatments that can be considered when cholangiocarcinoma is only present in the liver:
February 13, 2020 at 8:32 pm in reply to: CA19-9 is rising after 4-week break from Gem/Cis chemo #99674
- This reply was modified 2 days, 16 hours ago by bglass. Reason: Added a citation
Welcome to our community. It is positive news that your husband has done well with treatment and is feeling well during his break from chemo therapy.
It can be tough to decide when the doctor gives patients several different treatment choices. CA 19-9 is an indicator that can help track what is going on with our cancer, but it is not a perfect one so doctors usually look at other factors as well. Quality of life factors are important to patients, so how your husband is feeling may be a consideration as well. If you feel very unsure about which option to pursue, it may be beneficial to have a second conversation with the doctor or even to seek a second opinion from another doctor with experience with cholangiocarcinoma.
Gemzar alone for many patients is an easier chemo to tolerate. There are usually fewer side effects than with the Gem-Cis combo. If you are choosing between Gem alone or more Gem-Cis, the doctor should be able to tell you for your husband’s case if there are any trade-offs or differences between the two that should be considered in making that decision.
I hope the next rounds of treatment are also successful in keeping your husband’s cancer under control. Please stay in touch.
Welcome to our community and thank you for posting your story. It is good to hear that you are tolerating treatment and that the cancer seems stable. Fingers crossed your next round of scans brings reassuring news.
Scans are anxiety-inducing events for cancer patients. In my own case, the Dr. Google tips about how to avoid scan anxiety absolutely do not work when I try them, so I have no good ideas to offer. I just try to keep myself distracted and thinking about other things.
I hope your future rounds of treatment are uneventful and do their job for you. Please stay in touch. Regards, Mary
Thank you for your note. Please accept my condolences for the loss of your beloved father. Our community is indeed special. The circumstances that bring us together are not easy ones, but the path is smoother when we can share our journey with others.
When I was diagnosed, I was terrified and there was no good information about what to expect with this cancer. I am thankful for every posting on this board — helping all of us learn from each other and cope with a tough diagnosis. Your prayers are much appreciated and I hope you will stay in touch.
Happy to hear more good news about your experience with this trial – thank you for sharing.
Regards, MaryJanuary 22, 2020 at 9:06 pm in reply to: Until we meet again my love first six months of being #99605
Please accept my condolences for the loss of your dear husband. You did all you could and more to make his last difficult days joyful despite the burden of his illness. He was so blessed to have you by his side. Thank you for sharing your memories with us.
Sending sympathies and prayers your way, regards, MaryJanuary 21, 2020 at 7:01 am in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #99592
I am so sorry to learn this sad news about your beloved husband. Please accept my condolences and prayers.
His desire to join a clinical trial to help others is inspiring. Your dedication to posting his story has also helped others following similar journeys with this cancer.
I hope your family and friends bring support and comfort for you and your child over the next days and weeks. I hope you will stay in touch.
Take care, regards, Mary
Thank you for your update. Folfox is a common second-line treatment for cholangiocarcinoma. If you search it on the discussion board, you will find patient stories about this treatment.
Ascites at its early stages can be relieved for some patients with a low-salt diet and some doctors prescribe diuretics. Our patients report having paracentesis (draining) if it becomes too uncomfortable. From the accounts I have seen, paracentesis is a procedure performed with local anesthesia – it is bearable and definitely not something to be feared.
I hope the current treatment plan brings the cancer back under control without too many side effects. Please be proactive in getting doctors to address any side effects that come up. If there is a palliative care practice at the medical center where your husband is being treated, they may be able to offer help with any pain or discomforts from treatment.
Take care, regards, Mary
Welcome to our community. I am sorry to hear about your husband’s diagnosis and hope he receives good news from the next set of scans.
There have been a few board postings about mistletoe. If you use the site search engine you can find them. As with any treatment, it is important to be sure you are receiving qualified medical advice, and if you are having other treatments such as chemo at the same time, be sure your doctors know about any complementary treatments you are trying.
Please keep us posted. Take care, regards, MaryJanuary 11, 2020 at 9:31 pm in reply to: From Locally Advanced Unressectable to Cancer Free Post Surgery #99556
Thank you for sharing good news about your father, who is doing so well after his surgery and chemotherapy. I saw from your past postings he is at the two-year mark now. I hope his future scans continue to bring positive news.
Your family fought hard to be sure your father was considered for surgery and that he got the best treatment possible. His story is an example of why second opinions are important, particularly expert surgical opinions at the time of diagnosis for patients whose cancer is confined to the liver and bile ducts.
Take care, regards, Mary
Thank you for introducing yourself. What a story! I appreciate your words of encouragement and fully agree that a cancer diagnosis becomes a path to follow. Your path, while having some bumps, twists and turns, has been a good one so far. I hope your doctors can find a long-lasting solution to the bile drainage concerns you mention.
Best wishes and please stay in touch. Regards, MaryJanuary 9, 2020 at 1:52 pm in reply to: How to manage extreme sensitivity to smell during treatment #99542
Of these ideas, the one I personally was helped by was chocolate protein drinks. When nothing else was appetizing, the chocolate protein shakes in a bottle were appreciated. By contrast, a kind family member experimented with different fruit or vegetable smoothie recipes and none really tasted good to me at that time.
Plain or vanilla Greek yogurt was also something I could tolerate.
My guess is taste buds react differently for each person, so there may be some trial and error before you find a set of foods that are tolerable for you.
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.
It is good to hear from you and thank you for the update on your husband. He has had a lot of demanding treatments over the past nine months. I hope over the next days he continues recovering and that his blood counts bounce back.
CA 19-9 can be an early warning signal for cholangiocarcinoma, but it can start rising months before anything is evident on scans. Doctors cannot treat what they cannot see, so it can be worrying during the period between when the CA 19-9 starts moving and you and the doctors know what is happening. You can take comfort that your husband’s doctors are on the case to address a recurrence if it materializes.
I am not a doctor so this is just a suggestion about a question you might consider raising with your husband’s doctors, but one thing to ask may be whether the radiation could have caused some inflammation that is underlying the symptoms he is experiencing. Radiation side effects can materialize months after treatment, and the inflammation from radiation treatments can affect the CA 19-9 marker in some patients. (I was looking at a 2012 posting by Lisa Craine where she reports her CA 19-9 rose from 140 to 1350 after radiation.)
Waiting for answers is tough, but from what you describe, your husband’s doctors are actively engaged in finding good treatment plans. Please stay in touch, and I hope the next round of scans bring hopeful news.
Regards, MaryJanuary 6, 2020 at 6:22 pm in reply to: How to manage extreme sensitivity to smell during treatment #99523
Having your sense of taste altered during treatment is a potential side effect of some chemo therapies. It is important to maintain good nutrition during treatment, so I hope you will be able to keep eating good foods as best you can. Here are some tips I am aware of to help with this:
Try high nutrition beverages (such as protein drinks) and drink them from a closed container using a straw.
Rinse your mouth before eating. American Cancer Society’s website suggests a rinse containing one teaspoon salt, one teaspoon baking soda and four cups of water, and you should shake the mixture well before rinsing.
Eat foods that are cold rather than hot.
Use different seasoning than you are accustomed to, e.g., try different spices than is your custom, or add lemon juice or sweeteners to your food, or sauces such as catsup, or eat salty foods.
Avoid metal utensils.
Between meals, suck on sugar-free hard candies or chew gum.
I hope some of these tips work for you. Take care, regards, Mary