middlesister1
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Rick-
Thank you for posting. However, i was surprised to see such a high numbers for number of cases in the US; is it really 20,000 or should that be globally?
Thanks again,
Catherine
Dear Peter,
Welcome to our group. I’m sorry to hear about your girlfriend being diagnosed and having such a rough time with the chemo. On the home page there is a link the current CC trials.
http://cholangiocarcinoma.org/professionals/research/clinical-trials/
Also, further down on the discussion board there is section on clinical trials. Is your girlfriend being treated at a major cancer center? As Lainy said, second opinions are always a good thing.
Please stay in touch and let us know how she is doing.
Take care,
CatherineJulie,
We are all so happy to hear the great news- looking forward to many, many more positive results. Also, so wonderful that you were able to meet Matt!
Take care,
CatherineDear Darius,
Welcome to our group. I wish the best for you, your Mom and your family. Please know we are here to listen and hopefully others who have been in similar positions can help in some way along the road. My mother has been fighting CC since Oct 2013, and although life has changed, we have learned to appreciate all the good times and stick together during the difficult ones.
Take care,
Catherine
Dear Jessica,
Welcome to our group. I’m sorry you had to find out what CC is, and especially at such a young age. I’m not sure about the statistics, but it seems like we are seeing more and more diagnosed who are not in the over 70 age group.
Although it’s been many years, I remember the challenge of recouping from a C-section with just the one newborn; I can’t envision a transplant and the two little ones. I hope you have a tremendous support group so you can recover (while enjoying your babies).
We all wish you the best. Please let us know how you are doing.
Speedy Recovery!
CatherineMoose-
So close- so good to hear from you and best wishes coming your way for the last 3 to go by quickly.
Take care,
CatherineDear Shaika,
I am very sorry to hear of your husband’s death. It is extremely sad when one so young gets this disease. I hope there is some comfort in that he is no longer suffering.
My condolences are with you and your family,
Catherine
Dear Ahottie,
I am sorry to hear of your Dad’s passing. For myself and any of those I love, I agree that we hope when it is the end, that it is quick and comfortable.
My thoughts and prayers are not only for your pain to lessen, but to have a healthy birth for you and the baby. Please come back from time to time and let us know how you are.
Take care,
CatherineDear Papawadsicle,
Welcome to our group. I wish you luck in getting to the place that they can do surgery. You now have many people rooting for you.
Take care,
CatherineSusan,
Welcome and congratulations for such promising results already, I hope we get to hear may positive updates in the future as well.
Take care,
CatherineDuke,
Sorry to read this. 83k vs 100k is only 20%. I understand on there being limits, but wonder if clinically there is much of a difference in the two levels.
Fingers are crossed for getting into the trial.
Take care,
CatherineDear Diane,
Welcome to our family. My mother was in her early 70s, and no experience with MEK162, but hoping that your post may get others to chime in if they have been treated with the inhibitor.
All of us are in your corner with best wishes for low side effects and great results.
Take care,
CatherineDear Anne-
YEAH!!!!! I wish the “yeah” could have been easier for you and Mike to get to, but I am so excited for the promising road ahead.
Best wishes coming your way- Thank you for the update!
Catherine
Matt,
Great to hear from you. Thanks for checking in and letting us know how you’re doing. It is a long time to be away from home, but as you alluded to, it’s probably very nice up there now and extremely hot and humid in Richmond (have to find something good in what you’re going through besides potential cure)
Best of luck,
Catherine
Hi,
Gavin can probably answer for what is normal in the UK, but I think it is very standard here to have the blood checked, specially during treatments. Before each chemo cycle and radiation, they looked at readings which told how her liver function was doing (and many other tests). I have heard of patients having to delay receiving treatments if the blood work showed problems, but fortunately we did not run into that.
They still take the blood before each scan. One other thing they test for is the CA19 which for some people serves as a tumor marker and can rise and fall greatly based on how the cancer is going. With Mom, we have not seen the very high readings, but instead it has ranged from 42-59 since diagnosis (some do see readings in the 1000s).
Take care,
Catherine
