kris00j
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I’m printing this out and bringing it to my onc appt in 3 weeks. I hope EVERYONE makes some noise about this. If it’s as good/promising as it sounds, we need trials soon!! No 10 year waiting period… We don’t have time for that.
Hi, Caroline.
I know that CABOZANTINIB has been mentioned. If you do a search you will find a little (very little) about it. But according to Regina’s post, it doesn’t have to be a trial setting for some insurance cos. so that may help.
Best of luck for your visit. I hope you will find a treatment option you are comfortable with.Ugh! I hope this part of your ride starts the upward climb soon! Hopefully the tests will help to figure out the next step.
I know for me surgery is not an option, but Radiation was. I wasn’t given high odds for success, but was honestly told they were trying to slow or stop the progression. And it worked for a while.
I don’t know your whole story, but I would ask if anyone on your team has any ideas, possibly a little out of the box. There are many radiation therapies now, as well as trials that are proving to stop, if not reverse, progression.
Good luck with the biopsy.Hi. First off, welcome to the family. Maybe. Hopefully you won’t be joining us on this journey. Maybe there is something else going on that is hopefully much easier to “fix”. (My humor is sometimes a little off)
I wish I could be more help. As long as you are in the care of cc specialists, you are going in the right direction. I, too, would not like a 2nd biopsy, but in your case, I would much rather know what I am dealing with and pray for good results.
Please let us know how things go. While we are mostly not members of the medical field, I feel many have a degree through experience. We are all here to try to help and support each other to the best of our abilities.Carlos, there are protein powders and such you can add to smoothies or shakes, too. Just remember the body can’t process more than 20-30g at a time. Ensure or similar are good because they have lots of calories and nutrients.
As far as blood transfusions go, ask the doctor what he suggests for everything. And tell him if you start using ensure or boost or whatever. Any time you add something new you should inform the medical team.
I make smoothies with spinach leaves and strawberry, blueberry, banana. Looks bad but they are smooth like a shake and the spinach has lots of nutrients. Blueberries are big cancer fighters, and strawberries and bananas are good for you and improve the taste. If she suffers from nausea, add a little tiny bit of fresh ginger root. And if she doesn’t mind the taste, add a little kale for more nutrients.Wow!! Yes, cc often acts similar to pancreatic and lung, so MAYBE??? Let’s hope so!
Thanks for this!Michelle. I missed asking a lot of questions because I didn’t know to ask them. The oncs assistant will go over most of the info. They can discuss side effects and if they don’t know, make sure to ask the onc about possible kidney issues. Different chemos have different issues that they watch. I know some do have possible effects on the kidneys, but I’m not sure that all do.
Bring a notebook and write things down. Ask for clarification if you don’t understand something.Thanks, Percy. I will have to keep my eye on this. Dr. Fong mentioned possible ablation or IRE when I first started this journey. I will def be interested in IRE if this trial runs it’s effective course.
Hi Melissa. I, too, would like to welcome you here. There are many members to offer support, knowledge and experience.
First off, congratulations to your husband on getting a transplant! That is great news!! Unfortunately I can’t help you about the surgery, but I do know that taking the immunosuppressants can make dealing with cc difficult.
Please let us know how things go. Hopefully the 3 month wait won’t make too much of a difference. And as Lainy said, I’m sure someone will chime in here that has a bit more knowledge about your situation.I’m sorry you had to find this site, but welcome to our family! It sounds like you are very proactive, and that is important in this fight.
Prayers for surgery and keep those thoughts positive. I am unfamiliar with Energy Medicine: is that like Reiki?
Keep us informed on what decisions are made. I hope someone at UCH is well versed in cc?
