positivity

This is only my opinion.
I would think that chemo at this point would be too harsh and toxic for a body who is trying to fight and keep nutrients in the body and building immunity. Replenish her body with these nutrients through IVs, even if she needs blood transfusions or platelets, maybe this can be offered. Chemo compromises and lowers the immunity too much and can’t see how that will help. Definitely seek palliative care. Again, this is only my view. I know many choose to continue aggressive treatment.

That is a tough situation when the only standard treatment to this cancer is gem/cis. From day one I was extremely dissatisfied and disappointed that this was it, and of course the Xeloda/radiation. My mom could not undergo any of these treatments, so it was very tough to know that there is nothing offered. I think it’s very important to get the genetic testing which may offer hope of other treatments that studies have shown successful.

Hello Everyone,
Again it goes to personal decision and judging by each individual and what is going on in their body. I wonder if most if not all CC individuals have high inflammation in the body. My mom has very high inflammation which was determined by a blood test. This is when diet does play a factor, and we had to increase anti-inflammatory foods. That is not to say she will not crave certain foods she had pre-diagnosis and should not be deprived of it in order to maintain weight. It’s more of including these foods in the diet where it may have been lacking before. If one is sensitive and allergic to a food, one shouldn’t continue having it knowing it will aggravate the condition. This same with CC, there may be foods that may impact or aggravate it.

Doctor’s don’t want to discuss or have the training or time to talk about nutrition or any other factors that can offer healing. They diagnose and treat with conventional medicine. This is something you have to research on your own, or perhaps get advice from a nutritionist or holistic health practitioner. I can also understand when individuals are at a point where there is progression and you are just trying to stimulate their appetite with anything they enjoy to eat. You can’t force certain foods if they don’t like it, and they must eat. If it is possible and the person is not reluctant, by all means include healthy foods.

Does anyone have high inflammation with the CC?

Taylor,
Great! It is so important to make dietary modifications. My mom’s diet had to be reevaluated and changes made. There are times that it’s a challenge, especially looking for high calorie nutritious foods so she doesn’t lose too much weight. I recommended skinless chicken also, if she must eat it. I emphasized reduction of meat intake and more fish. Can she take fish oil? Sugar intake has been an issue and have been working on it as well.
How is the cannabis oil working out?

That’s great you are keep fighting. I know gem/cis can have some tough side effects such as:
anemia, low platelets, neutropenia, and increase in alkaline phosphatase. It is important that the patient gets breaks as needed or where they feel appropriate by stating it to their oncologist. Perhaps things will work out well where surgery is not necessary. Have you received molecular testing?

Linda,
That is a good decision obviously if the chemo at some point doesn’t work you don’t continue, especially if quality of life is a huge issue. Everyone should get tissue tested as Marion has stated to determine molecular alterations, with hopes of a target therapy that has success for that particular change. We have to keep trying and most important work through the symptoms or seek palliative care. Did you read our latest posts on Keytruda? Again, something worth to be familiar and varies from patient to patient.

Thank you for sharing your story and joining our forum Tilly. It takes determination and courage. I remember when I found this forum, and was happy to know there was a population going through the same. I took the plunge and joined at a time when all this information was new to me. I didn’t even know we had bile ducts, as you can see knowledge from step one. I went through the same emotions as everyone, panic, sadness, worry, hopeless, and kept coming across poor statistics and interacting with some doctors was not favorable. I had to swim through the muddy waters of the unknown.

What I have learned so far, which is based on my mom’s individual case and having to go with my beliefs.
I believe the cause of CC is a high inflammatory state.
The standard chemo of gem/cis does not work for everyone and with the major side effects can make certain patients like my mom who has chronic anemia worse. (we had to turn down chemo)
Need more immunotherapy treatments, and patients should be requested a molecular test from the beginning not when the condition gets worse.
Unfortunately oncologists are extremely limited with what they can suggest and this needs to change.

This is just a brief overview of my experience, and I understand how difficult this condition is as I continue this journey. It was rough at the beginning of diagnosis, and I had to get it together and help, even if it’s just to control symptoms.

Working together in this group ,we can and will see changes.

Michelle,
Wow! What a journey and warrior, and you don’t give up and you make the decision based on your needs and not always to the advice of a doctor. You seem to have a positive outlook which helps. That’s the unfortunate side effects of chemo the lower RBC and WBC and platelets which makes it tough for the body, and should be stopped as this can do more harm than good. You seemed to get the breaks as needed. I can’t wait for the day when gem/cis is not the standard treatment and there are other options where the patient doesn’t have to wait and can make the choice from the first appointment.