devoncat
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D, Welcome to the board. I am so sorry you lost your mother and you are right about being too young.
We are a great resource of support and we have several members here who found us after the death of a loved one. If you hang around long enough, you will see that we are not your average board, more of a family who does its best to help and support each other. So please stay around.
Kris
Welcome Kevin. I had my wonderful husband update here also when I was away for a bit. I am glad Kristin has a generous husband like you who takes the time to keep us informed.
As the Queen of Complications and a resident expert on all things terrible about drains, I have complete sympathies for Kristin. Please give Kristin a big hug and tell her a corny joke for me. She is missed here on the board so also tell her she needs to hop to getting better.
Kris
Rick,
I know there are people here with lung mets, but I am completely drawing a blank as to who they are now.I know that I wheeze and have heavy breathing still from when I had fluid on my lungs. I think some of that is just regaining strength and endurance. Like other parts of your body, the lungs need excercise. If you have been less active or laying down too much, perhaps your lungs have just lost their oomph and need a little excercise.
Kris
Erika,
You sound like a very caring woman. The next weeks will be hard and I am praying for your family. Who knows what is around the corner, but you will find the strength to get through it the best you can.Kris
I read about him recently. His interview showed him as a man of great dignity. Thoughts and prayers for his family.
Kris
My potassium plummets with dehydration. It makes me sick, weak, and slightly confused. I dont really know about high potassium.
Questions for onc…
What dose and for how long?Will chemo be given at the same time?
What side effects and when do these require medical attention?
When will be the follow up scan?
Will blood tests be taken regularly to check on liver function and general health?
I need to go back and look in my notebook to see what other questions I asked my doctor.
Kris
You are right to feel overwhelmed. That is the nature of cc. BUT, the good news is you found us and we are a great resource. I swear from reading other peoples posts I know more about cc now than my doctor…and knowledge is one of the sharpest tools in the toolbox.
Please go get a second opinion. There are many treatment options out there besides chemo and radiation and one of those might be better for your step daughters mom.
Kris
Welcome to our site and wonderful support and information group. I really want you to sit and think that NOBODY knows how long someone has to live. It is a guess. I have been a year and a half since my reoccurance and basically feel healthy despite having 2 quite large tumors.
I am concerned that your mother is being kept from the knowledge about her health. How can she make decisions if she doesnt know the facts? And these are her decisions and are very personal. Some people choose no treatment and some fight aggressively depending on how they feel and what they want. Perhaps in your family’s desire to protect her, you are actually putting her at a disadvantage.
This is a hard cancer and one that requires both mental and physical strength from everyone involved. We are a great resource to help.
Kris
Marion, the abstract mentions high intensity ultrasound treatment. Have you heard of this before?
Kris
Damamma,
You might want to suggest to your sister to get more fluids. I notice my neuropathy increases greatly when I am dehydrated. Dont know why, but for me it is true. I hate it when I cant feel how soft my kitty is.Kris
I share your frustration! There is information out there that just hasnt been written about yet. I am starting radiation and zeloda in a couple of weeks based on a protocol studied in here in Sweden. I found the clinical trial annoucment (keyword CORGI) but nothing has been published on it. I am going to benefit from the research because Sweden is small and heptobilary cancers have designated contact oncologists, but others will not. That is frustrating. How much information is out there but not written up?
From another study, I am also not getting oxilaplatin with the mix since it showed there was no benefit when added to radiation and xeloda. There is something special about adding radiation to the mix that cancells out the benefit of oxilaplatin. If these things would just be published, just think of the information AND cost savings AND quality of life. Xeloda and oxilaplatin go hand in hand like gemzar and cisplatin. But oxilaplatin can have sever side effects in relation to cold sensitivity. I am so happy that I am NOT getting oxilaplatin and that I can continue swimming, drinking ice tea, and sitting outside in the cool spring air. These things are important for quality of life. But how many patients get oxilaplatin with the xeloda during radiation? As a patient, we all like to have everything thrown at us in the hope that it might help, but if it doesnt, why suffer? These things should be published!
Kris
Dianne,
There is no cyberknife machine in Sweden. When I was researching, a came across an article that talked about medical tourism to Turkey for cyberknife. It was much cheaper than in the us and since the machine is practically always in use, the doctors there have a lot of experience with the procedure. You might want to check that out. You could get a really nice vacation out of it too!Kris
THANK YOU Marion!!! I had a discussion with my onc about this recently. It was put on the back burner, but I will be sure to print this out and give her a copy to move it up a bit.
Kris
