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Yes, 12 weeks of unpaid leave as a family member taking care of someone with cancer. Possibly a job can provide flex time or reducing hours or working from home when necessary.
Also, can someone mention in the conference what clinical trials funding is there for alternatives to chemo. Are they spending more money for the chemo treatments than discovering other ways to control the disease?I agree to the above, and you must get a few opinions for treatment. Oncologists will have different ideas for a treatment plan, and you have to choose the best for you mom, by research, communicating with other people and judging her individual health. My mom was diagnosed two months ago, and is already weak and fatigued so chose not to do chemo because of her unique health situation. I am still learning, and you need to have her eat very small quantities throughout the day. She never eats a lot, but rather healthy food in small portions. She also has warm lemon/ginger water in the morning. Of course calories and not restricting any foods is important, but still try to lean toward a healthy diet. I know the challenges! What is the tumor size?
All the best toward helping your mom! You are doing the right thing by asking questions and being concerned about treatment and if that is the right choice.
Way to go! Don’t put up with disrespect from doctors or treating you like a number, not a person. If you are dissatisfied and it is compromising your health and your psychological well being, find another group. I had to turn down two doctors for unfavorable communication or non-desirable treatment. Some can be negative communication or discouraging, and I would not want treatment for my mom from that sort of a team.
Julie, do the best for you!! Please get a few treatment options, work on strong nutrition and mental well being as well.Thank you Gavin. We will meet with the GI doctor and make the best choice since she is also not operable (which is good since she’s too weak for an operation), and not receiving chemo as it’s too harsh for her body. I hope down the road somewhere we can find an alternative to chemo. I did ask about PDT to one oncologist, but declined it as a possibility due to some unanswered questions regarding her anemia. This whole condition baffles me and hopefully I get some answers each month, other than an awful tumor or will get worse. Since we are dealing with another serious condition it makes it more challenging.
Thanks for your time and research into bile duct conditions. You are helping many people.
Thank you ! I seriously would love to remove the stents permanently. Is that realistic? Of course not! We may consider the metal stents and should find out soon.
Thanks again, and hopefully you are making progress with your father. I read a couple of older posts to check your background. Just like everyone else mentions, take it a day at a time. The decisions are tough, what to agree on and what to disagree on. Again, we met with one oncologist and he wanted to start immediately on chemo and radiation, and wanted to know why we would want to delay. I walked away, no thank you. Was that a smart decision? At that time, maybe yes, we shall see. Again, I have mentioned this in previous posts, I am against chemo in her unique health situation. I am looking at it as a patient to patient case and even though we share the same condition, the same treatment may not be possible.I am glad everyone shares and participates in this forum.
Thank you! We did consult with COH, too far. We will also visit USC. I checked the integrative services and unfortunately not covered by insurance which is ridiculous. Why should cancer patients be covered for chemo and radiation which also kills normal cells, but nutrition for the body has to be out of pocket. I disliked that part of UCLA, again about profits. Money is not a factor for her, but I thought to mention this for other people. Again, we don’t want chemo right now, will that change? I don’t know. That’s it with this condition, a lot of unknowns.
Hello Joe,
I feel for you and understand the complications, questions, frustrations. My mom has intrahepatic cc diagnosed 2 months ago. She has chronic anemia before the CC, so already gets transfusions, low platelets and she is not even getting chemo. We decided not to do chemo for this reason. Is there a way for them to adjust chemo and make it less harsh? or choose a different kind? Is radiation an option in place of chemo or would that make a difference?
I also thought the diagnosis was wrong or some sort of mistake or knowing that it is rare and hardly any information for doctors and they are learning too, that this is confused with something else or not as severe as they put it. I was tired of hearing the word cancer, awful tumor, will get worse, or all the negativity all in one month!! I got to the point wondering if there will be hope, but here I am and taking it day to day.All the best for you!
Thank you! That is an option, but chemo is out for now. It has been almost 2 months and we are not doing any treatment right now, other than the relief from stents. It’s for sure an extremely difficult decision, and as said very individual and hoping smart decisions are made. We will make a decision from month to month as I feel this condition is going to be month to month, not knowing what will happen from moment to moment. I don’t suggest everyone to not seek chemo, but as of now for our individual case that is the best decision. My hope is to get this condition recognized and have a better understanding, also the most important more data on various treatment options, not just one. An increase in successful clinical trials which are not chemo. Too much to ask?
Yes, it is intrahepatic. Just curious how effective SIRT is and I suppose it varies from patient to patient. Especially, how it compares to stereotactic radiation and what is the best choice.
Thanks!
Hello,
My mom was diagnosed almost 2 months ago. She is definitely not operable. One surgeon recommended SIRT, but another oncologist said it won’t work for her localized tumor. He said it’s better to use stereotactic radiation and Xeloda. We decided not to go back to him. My mom is weak from anemia and can’t have such harsh treatment. I was considering SIRT. You had a great experience showing it works. Again, she only has one localized tumor. What else should I consider?Thanks!
This whole condition is a learning process. I am also learning there are oncologists we would want to work with and ones that are a “No”, so I always encourage everyone to get a few opinions. They can widely differ, and your comfort level with one doctor may be better than another. You have to trust and have some level of rapport with the doctor.
Thanks to everyone for sharing posts.Thanks! We are seeing a few oncologists to make the best decision on who to continue with. There is a follow up with one next week.
Thanks for your responses. We will see another hematologist. If I was an oncologist, I would be reluctant giving chemo to a patient who has anemia. This will make it worse as that is a side effect of chemo where blood level can go down and become anemic.
My mom had an elevated lipase which was due to pancreatitis from an ERCP procedure. I know this is not similar to your situation, but do those drugs cause pancreatitis?
Julie,
I understand what you are going through, and you have incredible strength.My mom was diagnosed with CC over a month ago and hers is the reverse of you. She has a serious case of anemia before the CC and we still need to determine source. We may need to see another hematologist. Read my other posts and you will see the status of CC treatment. Read the last post of 2 different oncologist opinions and it makes you wonder which one is more accurate or beneficial. At one point this year my mom had 3 transfusions in one month, and currently able to do well with a 8.4 hemoglobin which will always need to be monitored. I am tired of doctors comments of CC being an awful tumor or in a bad location. I totally understand the sensitivity and have gone through the strong emotions also. We are taking it a day at a time, and for sure if you have the will, strength and see the daily joys, enjoy the moments. We must from time to time take our minds away from this and focus on what makes you happy. Hopefully this will also be overcome for you.
