positivity
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Hello Gail,
I know this can be an extremely difficult time, and this a great place to get support. It is always those judgment calls or decisions we need to make that puts pressure on the patient and caregivers. Know that you are doing everything in your power to help, and that is great you are willing for him to try cannabis oil for pain. Treatment can be rough on certain patients and allowing the body to take a break may be the best decision.These are opinions as I continue this journey also. I understand moving forward as I have in the past 6 months, continue to make decisions and hope for the best.
Keep us posted.
I completely support the comments above, as my journey started visiting oncologists ,it made me sick. Yes, discouraged with disbelief of chemo as the first and standard treatment option. Hopefully all the advocacy groups can take a stand on more funding toward alternative research and treatment methods for cancer. Of course it is already being done with certain cancers, but more awareness and action needs to be taken in bile duct cancers. That is why all of us are here. We need to voice are opinions to oncologists and ask them where they see research heading for bile duct cancer and how effective has their treatments been with their patients.
I would definitely seek the help of a naturopath also. It’s a support system meant to nourish the body and hopefully increase immunity.
Keep us posted, and thanks for sharing.
Yes those are questions for the oncologist. Based on my experience, they sometimes suggest both forms of treatment. Check for your case. What is the name of chemo he is receiving?
That’s incredible your transplant worked out Cathy. I wonder if they select by age also. We chose to eliminate this route as my mom is in her 70s and too risky, also a high chance of not being approved. Also, she had another medical condition which would increase her risk. It’s nice to hear a story of success!
I totally understand and have been in the nightmare. ERCPs do pose risks, especially if a GI doctor is not exceptionally skilled with this challenging procedure. My mom’s first ERCP caused pancreatitis which added an additional week at the hospital due to the pain, and redoing the ERCP. That was an awful two weeks! I remember City of Hope was quite a lengthy admittance procedure, and decided it was too far for us anyway. Make sure to get several opinions about his condition and take it from there as far as the best decision in his case. Sorry I can’t get into specifics.
Thanks for joining our forum, and it’s a great place for support. Keep us posted.
Hello Anthony,
The path you choose as far as treatments is personal based on your research, appointments with oncologists, and applying what you learn to the unique situation of your mother. It is tough, this I understand. If you want to try conventional with alternative therapy in the confidence that you think the treatment will work better, then by all means go for it. I have experienced many suggestions, and made difficult choices. It seems each case is unique and have the confidence you are making right decisions, and remember they can be changed also with time. Another words, if something doesn’t work or does, whether to continue or not.Hopefully this isn’t too vague as far as giving an exact or specific example, but just guidance.
Thanks for joining our community.
Thank you so much for sharing Tiah! You are incredible! Take your time to grieve, and always keep the great memories for she will always be with you. I know it is tough!
“One daughter of a mom with CC to another”
What chemo regimen is the oncologist suggesting?
I don’t understand why molecular testing is not okay if the patient is requesting it. Have you asked the oncologist, even if they have to send the sample somewhere else for testing?My experience in one instance was the oncologist suggested his chemo regimen before even looking into clinical trials or genetic testing. If the inquiry is pursued again, I am sure he will be okay with the testing.
Check again. I have not worked with Mayo yet.
Semih,
At this point I can only say thank you for joining the community and sharing. It is crucial we get as many people as possible to share their stories and treatment. This will allow everyone to benefit and understand how this condition works differently in everyone. I was reluctant to join for only a week, but wanted to share and make a difference. It was panic when I first heard the news and of course sorrow, but I had to turn it around.
Thanks again and keep us posted. I do see commonalities with some patients in the condition returning even after surgery, so don’t worry you are not alone. Can you get several opinions and look into several treatment options? Diet and exercise is still crucial regardless of treatment you choose or don’t choose.
Keep going and searching the best choice for you!(only my opinions above based on experience)
Julie,
That is incredible! You give inspiration to others, and the blood count is amazing! So you are saying that the CC tumor is completely gone, or that the cells are dead in the tumor?Hello Hopeseeker,
I was just curious about the hemoglobin since you were asking regarding a blood transfusion. My mom’s experience is being recommended one when it is below 8, but I am not sure about the low platelet count. Ask your oncologist if she needs a blood or platelet transfusion.
As for the vitamin C, that is general knowledge that it boosts immunity and therefore white cells to fight infection or viruses.
” I am not a medical professional, but one who is going through the same journey”Hopeseeker,
Does that mean her hemoglobin, and RBC are low also? If the hemoglocin is below 8, then yes she should get a transfusion. Keep immunity up with a lot of citrus or Vitamin C foods such as oranges, strawberries, or lemon water. Of course make sure she is not allergic. Check into supplementation also with Vitamin C, with the healthy diet. The vitamins are never a substitute for the healthy diet.Hi Julie,
Interesting you say one day at a time, I feel the same way even if I am not the patient. Loved ones experience the same emotions as the individual with CC. I take these steps as if it is me. I hope positive results for scans, and I also get nervous for that day, but try to takes things into perspective and understand any outcome will be faced and acted upon with the best decision. You have been amazing going through this journey.Yes, I am still on this journey of learning and understanding, but hopefully with the added research, treatments, and understanding from oncologists this will be a chronic condition to maintain and control. There has to be ways to prevent tumor from growing not just killing the cells. Which most are probably familiar with angiogenesis in which to stop the blood vessels supplying fuel for the tumor to grow. I don’t know the detail or extent of research on this form of treatment for CC, but more research will and should be on the horizon.
