positivity
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I am so sorry for the loss, but be comforted with the memories and support you offered her. On this forum we share the experiences and understand the magnitude of this condition. May you have some peaceful moments and take the time to grieve which is okay.
That is wonderful news as it is not a guarantee for everyone, so it’s nice to now this is actually effective. How big was your tumor? Has it completely disappeared and how are you feeling?
In my mom’s case, chemotherapy was not even an option, even if some oncologists tried to push it. I had to use common sense.
Hello Kate,
I understand your nightmare, as stent exchanges are risky also, in addition to this condition. My mom does not get chemo and bilirubin can shoot up high without it because of the nature of CC. It can be more blockage of the ducts causing a rapid rise of bilirubin in a short period of time. Migration of stents can also cause the bilirubin to go up quickly.
That is great she will be getting quality care. I know this is tough and one day will be facing the same with my mom.
Hello,
I understand your pain during this difficult time. This diagnosis is painful to begin with and very complicated, also knowing there is a time when one will face hospice. The most important is your presence and offering her emotional support and comfort where she expresses the need. Also having a strong medical team is important. Thanks for sharing as all of us can relate.
Thanks for sharing and it is okay to vent. That’s incredible Gavin that you offered your parents support in all ways through their medical conditions. That takes a lot physically and emotionally as I know also. You have to remember in this whole journey, which can be tough at times, to take a break, whatever that may be for each person. The stress can take an impact, so remember quiet time away from the situation is okay also.
Thanks so much for sharing as it takes courage. It’s okay to vent as many of us have done the same. Whether it’s certain doctors, lack of treatment options, and the changes we see in our family member over time. It is tough and it’s okay to express your emotions. I would like more options other than chemotherapy and I know it’s a slow process and being worked on, but in the meantime what are we left with? It can take a toll on loved ones, so take your quiet peaceful space away from this to give yourself a sense of calm. It’s not easy, and acceptance is hard, but remember the most important is you are present and a big support…that is what counts.
You have an incredible story Pat, and I wish one day most people with CC can manage and live with their condition for a long time. I also understand the uncertainty of life and no one knows how a body will react and will not be similar to someone else. I would also like to see chemotherapy not as a choice, but have alternatives which are better for the body. It’s harder to accept when you know the person did not cause the illness by drinking, smoking, doing drugs or being careless about their body.
Thanks for continuing to share and support the community.I am glad that you have a whole new perspective. When we experience this journey with a loved one, our perspective changes at each stage no matter how tough the situation. Enjoying your time together is what matters most. Thank you for joining this community.
Oh my! Ditto to all of the above. After experiencing this surprise it has been a learning experience every step of the way, difficult decisions, and know what to accept and not from the medical community. This is definitely no easy task, but when you care for a family member you do everything that is possible, but be realistic at the same time. Yes, give the necessary breaks you need or this will overwhelm and stress you. It’s easy to get overinvolved and discouraged so you need to bounce back. I have dealt with situations I never thought possible I can face, but have been present all the time. That to me is the most important. As I continue with the challenges, I have to maintain my life as well.
Amazing job to everyone and joining for support.Hello Hopeseeker,
It is the rapid weight loss as the case with most individuals who get CC. Overall since diagnosis she has lost 35 pounds and one doctor mentioned she cannot afford to lose anymore weight and for her to eat what she wants. Obviously doctors are not skilled or trained in nutrition and I feel if they have a view that a patient has a poor prognosis why bother with nutrition when the goal is to keep them alive. As awful as this may sound.
I am always grateful that she has an appetite. She has lost a lot of muscle. The last weight loss was 10 pounds in two months! More rapid weight loss the weaker the body to fight infections. As you may know this is another issue with CC, especially if the person has stents. I feel the stents are just as dangerous as the CC, so it seems no matter what there is something. Possibly have her eat what she wants in addition to some nutritious foods. Try smoothies or boxed nutritious drinks, although doctors always say Ensure, I get a plant based chocolate or vanilla drink. How is your MILs appetite?
This is also a result of no chemo or radiation treatment. People assume it’s the treatment causing the appetite and weight changes which is a side effect, but can happen even without treatment.Wow! That’s great news April. Most have trouble gaining weight or even their appetite. How were you able to gain a normal appetite? This is the case with or without chemo treatment. Of course it can be due to age also, since you are so young so maybe it’s easier to back to your regular eating. What did you do for stomach pain?
Thanks, we will see the GI doctor. Also, I don’t know how risky Epogen injections are for patients with CC. I don’t know if it was a coincidence or the cause, but during injections her alkaline phosphatase went very high, and bilirubin increased. This is something to be looked into further.
Thanks for sharing this incredible story. All of us can relate to you and understand your compassion and willingness to help as much as you could. We learn so much about the other side of life when we or a loved one gets a severe illness. We always hold dear to our hearts the ones we protected and helped which will be there forever. She was lucky to have an amazing sister!!
This diagnosis and understanding it more made me realize that it has probably been growing in the body for years before the official down on paper diagnosis. It’s tough as all patients differ. In our case treatment was not an option, as my mom is getting the same side effects as if she were receiving the standard treatment. So in our case that would have made her worse. Very tricky illness and at times hard to figure out. It’s as if you feel stuck at times.
