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Hello Richnkim,
Definitely get several opinions from oncologists and if one is not receptive to what you are requesting such as molecular testing, find one who is. Gem/cis is the immediate “go to” it seems for oncologists who should be treating differently on a case by case basis. I had the same experience of no clinical trials unless gem/cis is tried and I did not like that response. Doctors are not there to support or give input on nutrition and supplementation and I had to make the effort and do the research for what is best for my mom. I don’t even share the information with the doctors as some would downplay it. One suggested for her to eat anything as long as it’s in small quantities, which I disagree. She can’t just eat anything. You are doing the right thing in looking into vitamins or complementary care for your husband. Also, surgery does not provide guarantees and patients still had to undergo chemo.
Have you tried giving him fresh ginger to chew for nausea? It’s a good idea to test it whether it works or not. It should be chewed for the juice and spit out. Maybe that helps with stomach. Again, everyone is different and one person it may work another may be sensitive. That is my discovery on this journey.Dear Jacqueline,
My condolences goes out to you, and it is wonderful he had all your love and support.
Thank you for sharing on our forum, and we understand.Keep providing emotional support and ask questions if you are uncertain about anything. It’s important to work well with your medical team. The good news is that it’s stable, but ask how long do you have to use the gem/cis treatment before determining it is not effective. You already said it is not decreasing the tumor size. Keep us posted on other treatments.
Has she made changes to lifestyle? Examples being in nutrition, exercise, supplements, activities, etc…Thank you Mossc. More people like you should share on this forum, and for this being a rare cancer we may be surprised how many more people are being diagnosed. I heard there may be an increase. I don’t know if it’s that doctors now know what to look for or if it has been overlooked in the past. It’s still unusual and I try to understand it more by getting to the root or source. How did this begin? I asked that question for my mom looking at her last few years before diagnosis. I hope we can get people with CC to be treated as a chronic condition to be managed and not a cancer. One where we can use nutrition, stents if necessary, vitamins/supplements, and a less aggressive therapy then chemotherapy. It’s incredible the journey everyone on this site has gone through. I had my tough days and had to turn them to better days to help my mom.
Keep on fighting this condition and don’t forget to do things in life that make you happy.Caligirl,
That is great you are getting a few opinions. My mom cannot have surgery, confirmed by two surgeons. I decided if we get a third option from a surgeon , then they are pushing it and maybe too risky. Get ask much information as possible, and take into consideration everything about your father’s health apart from the CC. Would he still need chemo after surgery? There are patients that need both.Hello Julie,
Thanks for keeping us updated. I wondered what happened to you, and it is great to hear the news. Continue enjoying your life!Joe, Is it possible to give your mom a break of 1-2 months from chemo to help her body recover and build up her immune system? You can do this with top nutrition and immune building supplements and extracts. Maybe she can’t tolerate it anymore and needs to take it easy. This is a suggestion, but a personal choice. Definitely research and request clinical trial options. As you know chemo reduces immunity while trying to kill abnormal cells. Can you ask the oncologist what would happen if you waited to continue on this regimen?
Please Fay, Don’t settle with an oncologist who is unwilling to work with you. Don’t be afraid to get several opinions. I had to turn down a couple of doctors for personal reasons and it was the best decision. I definitely don’t like pushy doctors who only see one road or very narrow minded.
Alikemal,
It is tough and we had to decline gem/cis and Xeloda due to individual factors. There is no treatment that fits the model of “one treatment for all”. Eventually patients will be looked at on an individual basis including health history, other underlying health problems with CC, and choose a treatment plan. I have heard the chemo regimen is not guaranteed for all patients. It is unfortunate, but a fact. There may be more hope in immunotherapy. I highly believe in nutrition and a supplement plan that increases the persons immunity and lowers inflammation. Chemo is so toxic that whether you choose this route or not, one needs a support system of high immunity foods and vitamins/minerals, extracts. Don’t forget the high benefit of emotional support as well, and give hope to your mom. Choose activities she can enjoy. Bring some joy in this tough situation.
Another point: there should be clinical trials for older patients. It is unfair and inaccurate to only give people of a certain age or health status the benefit of trying a new treatment.Hello Lauriels,
Since this is a rare cancer and we need more clinical trials and research data is limited it’s understandable that some doctors say chemo does not work. One doctor told us the same and surgery is not an option. However, there were two other oncologists willing to try chemo, but we decided against it. It is a personal choice, and get a few opinions. There is a lot of information on Keytruda, so do a search on this site. It has been successful for some and hopefully we get more immunotherapy drugs for CC.
I also disagree that oncologists insist to start their chemo regimen first before being eligible for a clinical trial. I received the same response.Good for you Brianbarbaradoyle! I don’t believe when doctors suggest to eat anything, no matter what stage of the cancer. That does not make sense.
My understanding is that turmeric is not good for people with bile duct obstructions. I didn’t use it for my mom for this reason. I am not sure of the source, but somehow came across information. I know it is beneficial for inflammation, but again it may be for people not with bile duct issues.
Eliz,
I can only give advice based on experience. Sugar is good to reduce, also reduce or eliminate red meat. Again, you have to go according to your Dad and what he can tolerate and agree to. Small quantities of food throughout day, rather than a big meal. I don’t know if that is possible as most lose appetite anyway.
How about fresh green juices and/or carrot juice? Can he eat goo quality fish such as wild salmon? High sources of Vitamin C such as lemons squeezed in warm water or oranges, strawberries, or any type of berries. Ginger can be chewed and spit out for nausea. You still should seek advice from a nutritionist to get a better background on his condition and food allergies, foods he can and cannot tolerate. I had the same experience of a doctor suggesting to my mom to eat anything. I didn’t listen, but gave her suggestions based on her needs and what she would like and would work for her.All the best, and you are doing the right thing!
Thank you Christina! I am glad we were of help. No matter what your age, if you are close to a family member the experience can be the same. I have gone through the ups and downs in a short period. I would consider to be in the day to day stage. She is doing well today, but as I said, it’s a day to day journey.
All the best.Hello,
Thanks for joining the forum. You are in the right place for support and information. Did she have a biopsy to confirm the diagnosis or was it just the CT scan? I understand the shock as most people are when confronted with this diagnosis. Take a deep breath, and take it a day at a time. Get a few opinions and treatment options. Did you suggest molecular testing? Ask questions. I understand that PET scan is beneficial to determine the activity of malignant cells. What is the chemo regimen?Being supportive of your sister is a big help! Help with her lifestyle outside of treatment with good nutrition, how to cope with emotions, add things and places she loves. Give encouragement.
Keep us posted.
